Evidence and buildreport is

Independent Support Review of Evidence and Build phase July 2014 Vanessa Greene, Puja Joshi, Amanda Mainey and Emma Wallace, National Children’s Bureau Martin Bull, Council for Disabled Children

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Contents Executive summary

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Acknowledgments 4 Introduction 5 Key findings

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2.1.1 Proposals for workforce development

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2.1.2 Accessing services and support Children and young people’s perspective

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2.1.3 Accessing services and support – Parent’s perspective

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2.1.4 Effective protocols and practice for local delivery

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2.1.5: Training recommendations & development of a local Independent Support training offer

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Appendix A: Overview of participating organisations

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Appendix B: Evidence of consultations from each Voluntary, Community Sector and Private organisation

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Appendix C: Workforce development case studies

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Appendix D: Young people’s perspectives – case studies

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Appendix E: Parents/Carers perspectives – case studies

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Appendix F: Good local protocols and practices directory

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Appendix G: List of acronyms

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Executive summary Background This report presents the findings of the initial Evidence and Build phase of the Independent Support programme funded by government 2014–2016 to support families with children with Special Educational Needs and Disabilities (SEND) during the transition to a new system of assessment and support from September 2014.

The Evidence and Build phase sought to identify potential models and relevant effective multiagency practice and protocols in order to inform the development and implementation of an effective Independent Supporter workforce. The investigation took place between 7 April and 13 June 2014. Thirteen Voluntary, Community Sector and Private (VCS&P) organisations and twelve Parent Partnership Services (PPSs) contributed reports, the findings of which have been collated by the National Children’s Bureau (NCB) Research Centre and Council for Disabled Children (CDC) team.

Development of viable workforce models The report sets out some common ideas and likely challenges that will be faced by sector providers who in the future may be delivering a local or regional Independent Support offer. Examples of singular, multi-agency and consortium approaches have been suggested with a variety of staffing options involving paid and/or voluntary staff, but usually involving at least one paid professional staff member able to provide the significant expertise required to respond to the more complex needs of parents/carers and young people.

Organisations refer to an Independent Support workforce that is local, skilled and readily accessible to parents and young people. Feedback from the 25 contributing organisations demonstrated that the model most appropriate and able to meet such a requirement will depend on local area context and needs. For example, whilst a single agency model might work better in smaller areas, one model that is potentially well suited for meeting diverse needs across larger areas, is a multi-agency approach that involves a workforce based at more than one agency, which exists as part of a wider co-ordinated consortium network.

A key perceived advantage is the ability to draw on a broader range of specialist resources than is possible from just one organisation, and deploy them more flexibly to meet diverse needs. In addition, management, recruitment, training and continued professional development costs and risks can potentially be shared across agencies, with the potential to also draw flexibly and cost-effectively upon pre-existing training and recruitment capacity of consortia members and support quality and consistency across the workforce.

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Whatever the model, though, local level decision making in the day to day delivery of support has much to recommend it. For example, this could be achieved via a locally based Independent Supporter and/or volunteer support officers recruited from within the local community, who should be well placed to understand local complexities and respond to the local needs, particularly among socially diverse communities.

The reports suggest that parents/carers want the delivery of Independent Support to be designed around key points when parents/carers feel it is most needed, particularly during the early years leading up to diagnosis and at key educational transition points, but also at times of crisis. Another key ‘stress point’ was considered to be the transition from youth to adult services.

This perhaps mirrors the viewpoint of older young people who also want the service to be available to them during important transition points in their life. Organisations may need to manage peaks in the Independent Support offer, for example, the end of the school year, where young people and families may require an increased level of support, alongside the more continuous flow of new referrals throughout the year.

A strong emphasis is placed on the importance of the role of ‘volunteers’ with the suggestion that much can be learned from Parent Partnership Services and other key organisations with a history of deploying volunteers successfully in similar roles.

The report mentions parents as a group who could undertake the role of an Independent Supporter if provided with the knowledge and skills in both a paid and voluntary capacity.

This would come with benefits, particularly given the strong value that parents place on the benefits of peer to peer support of parents, by parents. Therefore, it may be worth exploring further the reasons why volunteers come into the service and how volunteers might support the programme initiative once Government funding ceases in March 2016.

However, broader consideration of sustainability issues is also important, given that funding for Independent Supporters does not cover the full three years of the transition to the new SEND assessment and support system. Management of large volunteer workforces at local level is by no means a cost-neutral option. Planning ahead for viable future funding options, such as on a charitable or grant basis, or via the building in of funding capacity within local multi-agency commissioning arrangements as they are restructured in the implementation of the SEND reforms generally is therefore recommended. It will also be helpful to ensure that effective mechanisms are established to generate local evidence regarding the benefits and impact of Independent Supporters, for example, dovetailing with national evaluation plans.

Whilst organisations were able to put forward overarching ideas for potential workforce models, few organisations set out accurate, detailed, costed models for Independent Support.

Therefore it may be that organisations could benefit from advice and support regarding the development of viable costings.

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Ideas regarding effective local protocols and practices The report presents some of the outcomes presented by organisations in light of local consultations with parents/carers, young people and other key stakeholders. A range of views were sought to understand what works well in local practice and protocols and what does not work so well. Given that the evidence and build was over a thirteen week period, it is fair to say that an impressive number of individuals were consulted.

On what works well, parents placed good multi-agency working highly on the list of what makes a good support service, and they appreciated this when it was happening. However, they were more aware when it was not happening as poor partnership working had often left parents feeling frustrated, annoyed or confused. Another finding was that although a wide range of methods of communication with families and young people were considered as having merit, a person centred approach, supported with social interaction and face to face sessions, is identified as the best way to build up a trusting relationship. The reports suggest that parents/carers want to feel confident that the support that they would be receiving from Independent Supporters would indeed be independent; so that they could trust the advice they were being given. Some parents/carers reported feeling that some of the existing support services with which they are involved were not transparent, with many suspecting that budgetary considerations restrained some services from recommending what may be best for their child and family, for example. In order for parents to feel confident about the Independent Support offer, organisations must provide clarity about how the role is independent and, if embedded into existing services (an approach which has clear benefits for ensuring that effective skills and practices for supporting personalised user-led support are embedded for the long term), how the role will maintain its independent status.

When consulting on what does not work so well, the themes that materialised for both children and parents were around a lack of personalisation. It was noted that support for parents/ carers and young people cannot be delivered effectively via a one-size-fits-all approach. It is important that staff have the expertise, time and resources required to deliver tailored, personalised support. Consideration of this must be taken into account by Independent Supporters whilst undertaking this role.

Independent Support services should also focus particular attention on ensuring that the voice of children and young people and a focus on supporting them to build on their strengths achieves sufficient prominence, especially if parents are risk adverse. A failure to listen to young people and recognise their capacity to contribute and progress to greater independence (if appropriately supported) was a strong feature in some young people’s feedback.

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Conclusions The remainder of this document provides a fuller overview of the range of workforce delivery models, local protocols and practices put forward by organisations in the Evidence and Build phase, as potentially helpful for organisations developing and delivering an Independent Support offer from September 2014. However, the breadth and depth of ideas and evidence submitted was substantial. Readers will benefit from referring to the original report sources for fuller information and learning regarding specific models and practice examples, of most interest and relevance to them. Where organisations have given CDC permission to publish, the original source material will become available on the Council for Disabled Children Website.

Christine Lenehan Director Council for Disabled Children 23 June 2014

Acknowledgements We would like to thank Kate Steward and Andrea McCarthy (National Children’s Bureau Research Centre), Alice Turner and Linda Toocaram (Council for Disabled Children) for their help in collating and formatting key aspects of the report. Most importantly we would like to thank the thirteen Voluntary, Community Sector and Private (VCS&P) organisations and the twelve Parent Partnership Services (PPSs) who led on carrying out the field work, research and findings collated in this document, over thirteen weeks, as well as the large number of children, young people, families and service providers that participated at a local level. We would also like to thank Patrick Agius at the Department for Education for his support and guidance on the Independent Support programme.

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1 Introduction This report presents the findings from the Evidence and Build phase of the Independent Support offer, being led by the Council for Disabled Children (CDC1) on behalf of the Department for Education (DfE). Findings have been collated by the National Children’s Bureau (NCB) Research Centre, from individual research and case study reports submitted by thirteen Voluntary, Community Sector and Private (VCS&P) organisations and twelve Parents Partnership Services (PPSs).

1.1 Background 1.1.1 Special Educational Needs and Disabilities reforms The Children and Families Bill received Royal Assent on 13th March 20142 and the new Act will introduce a number of changes to the way disabled children and young people and those with Special Educational Needs (SEN) and disabilities receive support in the future.

The key changes include:

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Giving parents and young people control over decisions about the support they are given

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Introducing Education, Health and Care (EHC) plans to replace Statements

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Providing personal budgets for parents and young people to carry out their EHC plans

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A requirement on local authorities to provide a local offer which will include the education, health and care services.

The capacity of the families of children and young people with special educational needs to navigate this new system will be key. The reforms include enhanced rights regarding involvement of children, young people and families in planning support, the right to be involved in drawing up EHC plans, the introduction of personal budgets and a duty to consult on a new Local Offer. The framework is also more ambitious in its coverage, giving a clearer legal underpinning to the contributions of health and social care and building joined up holistic support from birth to 25.

1 For more information about the Council for Disabled Children please see http://www.councilfordisabledchildren.org.uk 2 http://www.councilfordisabledchildren.org.uk/news/january-june-2014/children-and-families-bill-receives-royal-assent

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1.1.2 Independent Support The transition to the new system is expected to take place over three years from April 2014 March 2017, and to support this, £30 million funding has been provided by Government over the first two years to deliver an Independent Support offer.

The majority of funding is expected to be used to cover the costs of Independent Supporters’ time spent working directly with parents, children and young people. This would include the costs to recruit, manage and train Independent Supporters via the private, voluntary and community sector. Funding has also been made available across the two years to support organisations to implement the Independent Support offer, the development and roll out of national training and for an independent evaluation of the programme.

By the end of the two year funding period, it is expected that experienced Independent Supporters will be in place. Longer term sustainability is one of the key success criteria for the Independent Support offer, and ways to achieve this will be explored.

1.1.3 The role of an Independent Supporter Independent Supporters will be individuals recruited and managed by the PPS or VCS&P organisation to provide advice and support for families which have children and young people with SEN and disability needs, through the statutory assessment and EHC processes.

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Support will be provided to:

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New entrants to the system

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Children with a statement of SEN converting to an EHC plan

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Young people with a Learning Disability Assessment (LDA) converting to an EHC plan.

It is intended that Independent Supporters will offer a range of time-limited support, such as liaison across different agencies and provide advice on personal budgets. The level and nature of that support will be tailored to the particular needs of individual families.

In doing so, local authorities will remain responsible for conducting SEN assessments and putting in place EHC plans, and therefore will be required to work in partnership with those organisations that are under contract from July 2014 to provide a local Independent Support offer, where the co-ordination and production of EHC plans for sign-off by the local authority.

The funded Independent Support programme is intended to be time-limited and only to cover the transition to the new system, and build resilience and capacity among children and families themselves to negotiate services. The nature and duration of the Independent Support offer will be based on individual need but is likely to include:

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Helping the parent or young person to transfer a Statement into an EHC plan

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Helping the parent or young person understand the Local Offer

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Acting as a named contact person for the parent or young person throughout the assessment and planning process

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Liaising across a range of agencies with the parent or young person to help gather the information required for an EHC plan

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Providing information to parents and young people on personal budgets

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Supporting the parent or young person in contributing to an EHC plan that is then ready to be signed off by a designated professional that has been agreed as part of a local referral protocol process

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Signposting parents and young people to PPSs or local information advice and support (IAS) services, when the issue is outside the remit of an Independent Supporter.

1.2 The Evidence and Build phase In order to help ensure the delivery of a high quality independent support service from September 2014, CDC procured services with thirteen Voluntary, Community Sector and Private (VCS&P) organisations and twelve Parent Partnership Services (PPSs) to help gather evidence and report on effective practice models to achieve positive outcomes that would deliver an independent support offer within local authority areas. A full list of the organisations contributing to this phase of work is provided in Appendix A.

1.3 Methodology Each of the twenty five organisations carried out field research and development work, during a period of thirteen weeks, from 1 April – 13 June 2014 in order to report against the following pre-defined tasks:

Voluntary, community sector and private (VCS&P) organisations

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To investigate, gather evidence and report on effective practice models to achieve positive outcomes and deliver an Independent Support offer within local authority areas

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To produce evidence on what works well from a parent/carer perspective to make choices in accessing services and support

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To produce evidence on what works well from young people’s perspective to make choices in accessing services and support

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Fully engage in the pilot training programme being developed by CDC during this phase of work

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Parent Partnership Services (PPS):

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In the context of a PPS, to explore, consult and provide a range of options to implement an Independent Support offer and ensure the PPS service is extended to disabled young people and those with SEN up to age 25

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In the context of a PPS, fully engage in the pilot training programme being developed

by CDC during phase 1 of the Independent Support Service programme.

Summary of methods utilised by VCS&P organisations to consult stakeholders Organisations utilised a variety of methods to consult with children and young people and parents/carers as well as, in some cases, professionals including local authority staff and other stakeholders. Notably, when consulting with children and young people, organisations used an impressive array of creative methods, and a number enlisted the support of participation specialists to do so.

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A complete breakdown of methods across consultations can be found in Appendix B. In summary, methods varied to include:

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Paper, online and picture based questionnaires

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Telephone interviews

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Small focus groups and a two-day residential weekend

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Video diaries created by children and young people

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Online consultations via social media, including Twitter and Facebook.

When contacting parents/carers and children and young people, the majority of organisations drew upon existing contact and membership lists as well as those of partnership organisations.

To a large extent, the make-up of consultation groups was dependent on that of existing networks and contacts.

A large number of parents/carers were contacted from April to early June 2014, with varying response rates, ranging from a few in some cases to a large number of respondents where the original sample was broader.

Consultations were carried out with children and young people aged 11-25 years old, with a particular emphasis on older young people aged 16-25. Organisations varied in their approaches and samples; while a number of national organisations included young people with a range of needs and disabilities (for example, Action for Children), others, due to the more specialised nature of the organisation, included young people with a narrower range of needs (for example, the National Deaf Children’s Society).

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The extent to which organisations consulted with children and young people with complex needs was not clear and indicated a possible gap in this respect. In a number of instances, organisations undertook a case study approach and relied on the input of parents and professionals to present a narrative of young people with complex needs experiences.

The National Children’s Bureau (NCB) Research Centre reviewed the documentation provided by the twenty five organisations to collate and report on the key findings from the development work carried out. This report is the product of this work. It aims to summarise key points regarding delivery models and practices identified by the twenty five organisations, thus providing a central evidence resource for informing the main stage development and delivery of the Independent Support programme from September 2014. It aims to reflect the analysis and perspectives of the twenty five participating organisations, which were informed by the perspectives of local children, young people, parents and service providers.

All documents provided by the organisations were considered during this process. However, all review and reporting work took part during the five day period 16 – 20 June 2014, and by necessity comprised a relatively rapid review of documentation. Every effort has been made to report on findings consistently and accurately, but the authors would welcome any comments and points of clarification from readers.

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2 Findings 2.1.1 Proposals for workforce development This section is structured thematically around the following aspects for which design decisions would need to be made: A. Organisational delivery model (both) B. Geographical structure (VCS&P organisations only) C. Workforce (both, with more detail provided by PPSs) D. Modes of service delivery.

The options that were put forward for each design issue are presented below, along with any discussion of benefits, disadvantages, challenges or success factors identified by organisations.

At the end of the section there is a further discussion of some of the wider general delivery issues considered by the organisations. A selection of featured case studies can be found in Appendix C.

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Overview Organisation model • Voluntary, Community Sector and Private (VCS&P) organisations and Parent

Partnership Services (PPSs) considered a range of organisational delivery models, each with different advantages and disadvantages, and with no single model standing out as preferable. Many discussed choosing between delivery by a single VCS&P organisation or PPS at local level, and multi-agency approaches which seem to provide potential benefits in terms of increasing the resource base and diversity of specialist skills, and flexibility to respond to needs, as well as sharing risk, but create additional challenges in terms of management, co-ordination and ensuring consistency of delivery. Regional or even national structures were also seen to offer these same advantages and challenges.

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Another key choice is between offering a stand-alone service, or one that is embedded within existing services, such as the PPS, local authority, schools, or even the local multi-agency systems as a whole (for example, with all key local agencies contributing to Independent Support within their core service). There are significant question marks regarding the feasibility of embedded approaches to offer a service that will be able to operate, and be seen to operate as truly independent for families, but embedded approaches are likely to offer advantages for future sustainability over approaches that require a completely separate service delivery structure and workforce.

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The most appropriate model will depend on local context, for example, the size of the area, level of demand, and availability of a local VCS&P organisation with relevant skills and resources. It was highlighted that delivery by a single agency from a single point of delivery may work well for small boroughs, but use of multiple agencies and delivery sites may be helpful in larger or more diverse local authorities, for example, allowing tailoring to specific local Black and Minority Ethnic (BME) communities, or outreach locations in rural areas.

Likewise, delivery organised around schools would work better in areas where children tend to live in the same local authority area in which they attend school, but possibly less so in areas such as some London boroughs where out of borough school placements are more common.

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Workforce • Another key area of potential differentiation was the extent to which

organisations anticipated utilising paid professional staff, and/or volunteers, with various models proposed: all paid; mixed (for example, paid lead professionals, and volunteer case workers); and all voluntary (with the PPS service most likely to propose all voluntary, reflecting strong histories of utilising a volunteer workforce in a similar role in many areas).

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Professionals were seen to offer the greatest expertise to respond to complex needs. However, volunteers, especially parent/carer peer volunteers, were considered to offer alternative benefits based on their experience and empathy, whilst community volunteers in areas with high prevalence of BME families and families with English as an Additional Language (EAL) were thought to be especially well placed to respond to the cultural and language needs of local parents/carers.

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For PPSs, cost considerations were key: they felt they could support more families using volunteer workers within the same cost, compared with professional workforces. One organisation proposed a model of paid staff that would be particularly targeted on the most-needy families. In this context, there is a balance to be struck between offering more specialist professional support to those with the most complex/multiple needs and disadvantaged circumstances versus a more generic offer to more parents/carers.

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However, whilst undoubtedly a lower cost option, it was recognised by many that a volunteer workforce is not necessarily a low cost option, and is also associated with greater risk in terms of quality, and a need for a higher level of managerial resource for training, monitoring, supervision and also recruitment of volunteers. This not only reflects the lower specialist skill-base compared to professional staff, but the much greater number of individuals needed given that it is not usually realistic for individual volunteers to offer more than a few hours of time per week.

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Many PPSs had been able to give consideration to the size and structure of the workforce. Reflecting that VCS&P organisations are more likely to be starting from scratch in developing their offer, they were less likely to have considered this level of detail, and it may be that additional support and guidance around this would be helpful, and that the PPS will have useful learning to offer.

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Some organisations from both the VCS&P and PPS sectors had developed ideas about approaches for recruitment and training. Some organisations discussed the potential to draw on existing volunteer or staffing resource bases, especially in the case of larger multi-agency partnerships, where the scale and potential flexibility of existing resources may have more adaptability. In considering approaches to training and recruiting new staff or volunteers, many organisations discussed working in partnership, for example, with or between local authorities, or in a VCS&P consortia context, allocating responsibility to an organisation with the best training or recruitment infrastructure. Joint

approaches to recruitment and training would enable flexible utilisation of existing recruitment and training infrastructures across organisations, sharing of costs, and also the potential for joint training, helping workers from different background understand each other’s roles, and what is required to work together effectively. One PPS area suggested targeting recruitment at students training in relevant subject disciplines.

Modes of delivery • Organisations tended to propose offering some kind of telephone helpline

and web-based information provision as well as face-to-face support meetings for families by appointment. However, in addition, a small number of areas identified innovative options such as flexible face-to-face drop-in services and support groups, and interactive web-based support approaches, which may be useful options for other areas to consider.

General issues for the development of the Independent Support offer • A number of general issues and challenges emerged that were of concern to

organisations, or were apparent from gaps in submissions by organisations, where additional guidance or support may be helpful. Some called for greater clarity regarding expectations of the Independent Support role versus other existing services. Some areas found estimating likely levels of demand and capacity requirements to be challenging, and many were unable to develop detailed costed models. In this context, clarity regarding expectations for delivery funding possibilities for Year 3 may also be welcome.

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A. Organisation delivery model

Proposals for the type of delivery models: i. Single organisation approach ii. Multi-agency approach a. Multi-agency, with one organisation as the overall lead b. Two organisations working in equal partnership iii. Embedded in an existing service iv. PPS - more detailed variations a. PPS led –Independent Support fully integrated into the PPS b. Separate Independent Support offer run by a VCS&P organisation

i. Single organisation approach Several VCS&P organisations, including Core Assets,3 Bromley Mencap,4 Action for Children,5 National Deaf Children’s Society (NDCS)6 and Contact a Family,7 all proposed an Independent Support Offer delivered and managed by one VCS&P organisation. These were all outlined as a stand-alone service.

It was also perceived that a single lead organisation approach benefits (i) the organisation, as the approach is simpler to manage than, for example, a multi-agency approach, and (ii) families as it would be easier to ensure the service is delivered (and seen to be delivered) independently, which is more challenging for other options involving the service being embedded in existing services (discussed further below).

Core Assets felt that this approach would work best in a small area where staff would possess in-depth knowledge of local policies, practice and context. Contact a Family highlighted that a key limitation with a single agency approach is that its services are restrained by the specific range of expertise in the organisation. If their service was to meet the needs of all types of children and families with different needs, there is a risk that it may only be possible to 3 4 5 6 7

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Core Assets workforce development options – option 1, pg 12 Bromley Mencap workforce development options – option 1, p13 Action for Children workforce development options – model 2 National Deaf Children’s Society, case study 1 – Independent Support Officer (individual), Appendices, pg 41 Contact a Family, workforce development options – model 1, Stand alone Independent Support Officer Service, pg 8

provide a fairly generic, non-specialist service. One suggestion to overcome this was extensive training in different aspects of support.

It was also highlighted as important to ensure sufficient capacity within a single organisation to effectively manage, support and supervise the Independent Support workforce across families, otherwise families may suffer from a below standard service. One suggested approach to this was to employ a designated Independent Support co-ordinator responsible for recruitment, training, support, retention and development within the organisation.

It was also felt that organisations acting alone would find it more difficult to achieve strong joint working from local partners, and it was highlighted that doing so would need to be a priority for organisations working with this model.

ii. Multi-agency approach A number of organisations proposed a multi-agency approach, where two or more services (e.g. multiple VCS&P organisations, or one VCS&P organisation with a PPS or local authority) would work to deliver the service. For example, Bromley Mencap8 proposed a consortium model where Independent Supporters would be based in the various agencies but be part of the network (consortium) to ensure that training was consistent.

The key advantage was seen to be a greater level and diversity of resources, skills and expertise, along with more tailored and flexible support offered to meet the needs of different children and families in different contexts. For example, KIDS9 felt that the workforce capacity achieved within a consortium model would allow staff to focus more on supporting hard to reach young people including those from BME backgrounds; Gypsy, Roma and Traveller (GRT) communities; and young offenders. It could also offer more flexible approaches to reach rural areas and, for example, greater flexibility to offer separate Independent Support to both children and parents/carers to support equal voices in situations where there may be a conflict of views or interests.

Furthermore, some PPSs expressed the view that the involvement of multiple agencies would help to facilitate a more consistent joined-up vision and approach to supporting families in the area generally, especially for families who are accessing other services from these organisations.

Other strengths included the possibility of capacity building through shared resources, and increased co-operation and communication between agencies, which again would result in a more consistent service for families. Agencies would also be able to share risks and costs, for example, of recruitment and training.

However, some challenges were identified as associated with utilising multi-agency delivery approaches, including a potential lack of engagement by suitable partner agencies.

Staffordshire PPS suggested that for such multi-agency arrangements to be effective, robust 8 Bromley Mencap workforce development options – option 2, Voluntary Sector Consortium model, pg 13 9 KIDS workforce development options – 1C, Multi-agency consortium to support young people’s choices, pg, 22

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partnership, management and governance arrangements must be agreed early on to avoid clashes or confusion later.

Some PPSs also highlighted how the need to co-ordinate multiple organisations would have additional time and resource requirements and bring additional risk. In this context the importance of clear roles and responsibilities and lines of communication was felt to be important. Effective processes for case allocation were also desirable, for example, to avoid any one service being overstretched or taking on cases they were not best suited for and to thus ensure that the family received the best support option.

Some VCS&P organisations raised the issue that a common challenge for any type of multiagency led approach, which involved agencies with different purposes, is the potential for confusion, or lack of consistency or continuity for families, for example, if they were referred to an Independent Supporter in one agency at one stage, and then later to another one when a different need arose. Strong communication and joint working was regarded as key in this context. There was also concern amongst some VCS&P organisations that different families may receive different messages depending on which professional/agency they engage with.

Therefore, regular and high quality training – perhaps joint training – for the workforce, and cross-agency communication on an ongoing basis was considered key in order to ensure that services were delivered consistently between all agencies.

a. Multi-agency approach, led by a single organisation The multi-agency models outlined by all VCS&P organisations were based on one organisation taking the overall lead. Many PPS organisations also outlined multi-agency approaches in which the overall responsibility would lie with the PPS but support would be delivered in partnership with other agencies (i.e. two or more different organisations would provide one or more Information, Advice and Support services). Many PPSs suggested they would be ideally placed for this kind of leadership role, based on their extensive experience in delivering relevant support.

The main perceived advantage of retaining leadership within one organisation was in making lines of management and accountability simple and clear and effective.

Another variation on this approach was for the Independent Supporter managed by the central PPS service to be seconded to work in the offices of partner organisations. This would increase local reach, and provide mutual benefit and sharing of ideas and skills arising from interaction between the Independent Supporter secondees and the partners’ staff. For example, Norfolk PPS suggested a split model with half of their part-time Independent Supporter working centrally, and half operating from a partner’s base.

b. Two organisations working in equal partnership A small number of PPSs proposed a partnership arrangement where the PPS would share overall responsibility with another partner organisation equally.

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It was anticipated that staff in both sets of organisations would bring an equal level of expertise and input to provide a strong and consistent offer. Co-ownership could also reduce pressure on one single service and spread risk.

Despite some advantages, there are also a number of challenges identified with this model.

The approach relies on all organisations offering Independent Support to work collaboratively but with no organisation operating as the ‘lead’–, managing the standard of delivery may become difficult, and there would be no clear accountability structure. It may also be difficult to ensure standards and consistency of advice were maintained throughout as the services would be managed by different teams. Ensuring that all staff received comprehensive training and regular updates would be vital to overcome this, and the implementation of a robust quality assurance system would be essential.

iii. Embedded into an existing service Rather than develop a new stand-alone Independent Support Offer, many VCS&P organisations suggested embedding the service into an existing service. This type of approach would allow organisations to build on existing awareness of support services amongst families.

For example, Inspira10 proposed using existing professional staff who would integrate the Independent Supporter role into their existing role in order to increase trust from families, encouraging them to use the service within a setting that they were familiar with. Other strengths of embedding service delivery are that streamlining services, rather than introducing new ones, may reduce the risk of duplication, dual referrals, and reduce the number of professionals involved with one family.

In terms of which existing services would be suitable to embed the Independent Support Offer into, two organisations, SCOPE 11 and Action for Children, suggested the PPS, local Parent Carer Forum, disability-specific group, Children’s Centres and/or local voluntary organisations would be suitable settings. The Carers Resource suggested utilising schools as they are a universal service reaching families who might not otherwise know that support is available to them.

However, a key risk identified as associated with embedded approaches was that families may not view the service as truly independent from the other support they receive from that service, and that conflicts of interest may potentially arise. A clear understanding of parental views about the impartiality of existing services, and clarity about how to escalate concerns about the Independent Support Offer if they arise, are required from the outset. Providing clarity about how the role works in relation to the other functions of PPS services, and demonstrating how independence would be achieved, would also be vital.

Organisations also highlighted that another potential risk with this model was families not receiving the full benefits of the Independent Support Offer if they were ‘mixed in’ with other existing services (e.g. the service may get ‘watered down’). One suggestion to mitigate this risk was to require all organisations offering Independent Support to produce a delivery plan that adheres to a clear and detailed ‘curriculum’ of an Independent Support Offer.

10 Inspira – workforce development options – professionally qualified model, pg 34 11 SCOPE - workforce development options – option 2.1.2 and 2.1.3 , pg37

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iv. PPS - more detailed variations a. PPS led – Independent Support fully integrated into the PPS A large number of the PPSs proposed, and listed as their preferred model, fully integrating the Independent Support Offer into their existing service. For example, Tower Hamlets PPS12 proposed this model, which builds on their existing volunteer bank to embed the service into their current provision, increasing the numbers of fully trained Independent Parental Supporters (IPSs) available to parents/carers currently. Gateshead PPS13 and Supportive Parents PPS14 also proposed a similar model, fully embedding the Independent Support service into their current support services, with Supportive Parents PPS stating that this was their preferred option of delivery.

Providing Independent Support within the existing structure was regarded as being an efficient and streamlined way to provide joined up support for families who may need on-going support with other issues in addition to the transition to, or assessment for, Education, Health and Care plans. Another perceived advantage was that some service users will already be familiar with the PPS and have trust in the service if it is provided in a familiar setting. Some areas also highlighted benefits for longer term future sustainability as the existing workforce would be up-skilled, meaning that they could deliver enhanced functions for the future.

However, an area of concern among PPSs was the potential for families and other stakeholders to perceive the offer as not truly independent from the local authority’s function. Providing clarity about how the role works in relation to the other functions of a PPS service and demonstrating how independence will be achieved would be vital in this context. Others also raised the potential for confusion if a family was seeing an Independent Parental Supporter (IPS) in relation to their plan, but had to see a different staff member or volunteer within the PPS for other issues. On the one hand, ideally all support for one individual or family would be delivered by one person. For example, the PPS could allocate work depending on the level of support needed and who has the skills suitable for that specific family’s needs. However, it is not clear how this would fit with the exemplifications of the minimal standards that apply to all PPSs.15

b. PPS extending their services by sub-contracting out to a separate organisation.

A small number of PPSs outlined the option of a stand-alone Independent Support offer, run by a VCS&P organisation.

Supportive Parents PPS proposed such an offer, where the lead VCS&P organisations would offer direct casework with families. The benefits of such a model include increased perceptions of true independence from families, and staff would be delivering a focused Independent Support offer, rather than managing other aspects of the case as well.

12 Tower Hamlets, workforce delivery options – option 1 – no page number available 13 Gateshead, workforce development options – option 1, Independent Support fully integrated into PPS, pg11 14 Supportive Parents PPS, workforce development options – option 1.5. Independent Support as part of a wider SENDIAS service – no page number available 15 http://www.parentpartnership.org.uk/documents/parent-partnership-services/minimum-standards-for-pps/

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A potential disadvantage could be the need for families to discuss child/family needs with both an Independent Supporter and a PPS case worker, for example, if they had wider support needs. Organisations could mitigate this by ensuring strong communication between agencies to ensure services were as joined up as they could be, as well as communicating clearly about how the different roles and processes work to the family at the outset of their journey with the Independent Support service.

Staffordshire PPS16 and Wolverhampton PPS17 highlighted a potential alternative option of a stand-alone service being delivered by the local authority. However, this had limited appeal, because of concerns that families may doubt the true independence of the support on offer.

Careful explanation and communication of this to parents/carers would be required if this model was opted for.

16 Staffordshire, workforce development option – option 3 , PPS led service, pg 5 17 Wolverhampton PPS, workforce development option – model 6- no page number available

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B. Geographical reach and organisation

Proposals for the geographical reach: I. Local (including local authority based) II. Regional and national

i. Local (including local authority based) Several organisations considered the geographical reach of the Independent Support offer as an important consideration to the development of the workforce, and most of these proposed local models.

For example, the Seashell Trust18 proposed a local model where a local VCS&P organisation would manage the workforce of Independent Supporters. Referrals to the service would be made to the VCS&P organisation lead and allocated to the Independent Supporter in conjunction with the local PPS. Amaze also proposed19 a local model, which evolved from the acknowledgement that each local authority has its own culture, language and working practices and procedures. Taking this into account when developing the Independent Support workforce was considered vital. Again, it was recommended that the local service would be managed by a local VCS&P organisation, which is trusted and is aware of what is happening on the ground in the surrounding area.

A key strength of a local service was seen to lie with its workforce, ideally staffed by members of the local community, who are likely to possess in-depth knowledge of local policies, practice and context, enabling them to understanding families’ support needs in a tailored way, and build a meaningful relationship with them.

It was suggested that families may also be more aware of local services which may increase engagement, and may also feel that a local service has the flexibility to provide a tailored offer more easily than a national service which may be bound by protocols.

A challenge for the local model is that an area may not have obvious/good quality VCS&P organisations to take the lead. Advertising for leads in a slightly wider local area may be required if no suitable candidate is identified.

Some organisations also identified that local staff may have limited knowledge compared with staffing across a wider range of areas. However, one suggestion to overcome this 18 The Seashell Trust workforce development options – option 2, Local Model, pg 10 19 Amaze workforce development options – option b, Different IS delivery models, pg9

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was to establish cross–border/regional protocols with others for sharing good practice, communication and information with other Independent Supporters as well as perhaps partnering others to deliver regional or national information sharing and training activities for staff.

ii. Regional and national A small number of VCS&P organisations considered regional or national models of organisational delivery. For example, Amaze proposed20 a regional model and the Seashell Trust21 outlined both national and regional models, as well as a local model option.

Potential strengths of having an overarching regional or even national leadership structure were perceived to include potential cost efficiencies arising from centralised management, administration and resourcing, enhanced service capability around recruitment, training, professional development, quality assurance, risk management and staff retention, and greater commissioning efficiencies and accountability via a single provider across multiple local authorities.

In terms of direct management and organisation of IPSs and family cases, no organisation suggested this should be done at national level, but regional oversight and decision making about the allocation of IPSs to individual families was anticipated within national and regional models. This was perceived to allow for the flexible deployment of resources, for example, the potential to reach families in remote areas, hosting regular locally based drop-in services at peak times for high need areas and providing services via schools, Children’s Centres and health centres.

In addition, whilst such centralised approaches could offer efficiency, there would be considerable challenges managing, quality assuring and ensuring consistency across the service. As agencies will be geographically distant from one another, good communication would be vital to ensure the service is provided to a high standard across all areas. Robust management and monitoring processes were also considered key to overcome this.

Another perceived risk identified by one organisation was that the workforce might ‘spread’ themselves too thinly by having to cover a wide geographical area, which could lead to deficiencies in the service provided to families. Regional models require careful caseload management to ensure parity of service provision and reasonable workloads for individual Independent Supporters.

20 Amaze workforce development options – option b, Different IS delivery models, pg9 21 Seashell Trust independent support workforce options – option 1, option 2, option 3, pg9

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C. Workforce proposals Consideration of the type of workforce to employ was a crucial factor within the proposals.

VCS&P organisations and PSSs all considered the relative merits of using voluntary and/–or salaried professional staff in different ways. Some PPSs also discussed likely levels of staffing, patterns of working and allocation of roles in a little more detail, reflecting their previous experience of delivery. VCS&P organisations were less likely to discuss these aspects and may be able to learn from the experiences of PPSs.

Proposals include: i. Voluntary staff ii. Permanent salaried professional staff iii. Paid associates and sessional staff iv. Level of staff v. Patterns of working vi. Allocation of roles

i. Voluntary staff Many VCS&P organisations currently employ voluntary staff within their workforce, therefore extending that workforce to include volunteers as Independent Supports is a natural step as most organisations were familiar with the processes, approaches and support required. For example, Inspira22 and Cheshire West and Chester Parent Partnership Service (CWaC PPS)23 proposed recruiting and training volunteers to become Independent Supporters, who would then be managed by a professional, qualified and salaried co-ordinator.

Likewise, most PPSs also outlined models based on developing their current workforce of volunteers to manage and deliver the Independent Support offer, or recruiting new volunteers to manage the service led by a paid co-ordinator. For example, Southwark put forward the option of working in partnership with the PPS in a local neighbouring borough to recruit and train a shared team of 30 volunteers, to each deliver three hours of support per week to a total of 100 families, coordinated by a salaried staff member. The cost of this option was estimated to be approximately £32,000 for each borough. Very few PPS proposed a full qualified workforce which may reflect a pre-existing emphasis on a volunteer workforce in many areas.

22 Inspira –strategic risk assessment of workforce development models– volunteer model, pg.32 23 Cheshire West and Chester Parent Partnership Service, workforce development models, Model 1 – no page number available

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Organisations could also clearly demonstrate the value that the volunteer workforce bought to their existing services. Most PPSs felt that expanding the volunteer workforce was the most appropriate option due to the significant additional costs associated with models involving more paid staff.

For one PSS (Tower Hamlets), in addition to cost, a benefit of having a volunteer workforce was seen to be the ability to draw on the knowledge, skills and engagement potential of members of the local community. The PPS is based within an area which has a significant number of individuals who do not speak English as a first language. As a result, the PPS has developed a volunteer workforce with capacity for delivery in 20 different languages to accommodate local needs. Almost all the volunteers are also residents of the borough, potentially increasing their credibility with the service user.

Tower Hamlets PPS also outlined a model recruiting new salaried Independent Supporters, who would rotate on a part time basis. The cost of this was higher than the previously outlined volunteer-based model. Although training was built into the model, concerns were that new staff would not possess the breadth of knowledge required to fully support families. Several interpreters may also be required if staff do not possess additional language skills, and the interpreters would also need training on SEN processes.

A number of VCS&P organisations, including Adviza, Scope and Amaze, discussed the role and benefits of parents/carers working as volunteers. This was not explicitly discussed by PPSs but it is likely that this was already assumed as reflected in their pre-existing practice. The benefit of using parent/carer volunteers as ‘experts of their own experience’ was seen to lie in empowering service users to become actively involved in supporting others, whilst learning new skills and becoming more able to support themselves going forward. It was discussed that parents/carers often look to other parents/carers in similar situations to themselves for advice and this model allows those supportive parents/carers to be recognised and championed for their efforts. By employing parents/carers to the Independent Support workforce organisations can also ensure that their offer is complemented by personal insight into the stresses/demands of having a child with SEN and disabilities and thus (hopefully) be more responsive to their needs for information and support.

Amaze and The Carers Resource both suggested developing IPS volunteers. The most obvious pool of very skilled, and potentially available people, already supporting families with the assessment and planning process in many areas, are the IPS volunteers used by many PPSs. Some VCS&P organisations also highlighted the benefits of drawing on volunteers with particular skills or experience from other existing organisations. For example, Action for Children suggested that volunteers be recruited and based within existing parental support structures including Parent Carer Forums, disability-specific groups, Children’s Centres and local voluntary organisations.

Although volunteers can be a very useful resource, there are a number of challenges associated with their involvement that were identified by both VCS&P organisations and PPSs. Many stressed that although the use of volunteers could reduce associated staffing costs, other associated costs such as training, supervision and volunteer turnaround should also be borne in mind, and could be potentially higher with a volunteer workforce, compared with a 27

professional workforce. Additional training, safeguards or supervision is often required, for example to ensure adherence to safeguarding and confidentiality requirements, effective approaches to working with young people and families, especially SEN and disabilities, and managing complex caseloads. The greater training and management resource required not only reflects the lower specialist skill-base compared to professional staff and also the much greater number of staff needed given that it is not usually realistic for individual volunteers to offer more than a few hours of their time per week. In this context, Amaze also highlighted that volunteers may not always be able to commit to specific time-critical appointments at convenient times and locations for families, thereby creating additional management complexities.

If not suitably trained or managed, volunteers could provide inaccurate information and advice to families, leading to the delivery of a poor quality service and a loss of trust from the service users. However, as mentioned earlier, these organisations are experienced in training volunteers and the importance of training was prominent through the proposals.

Bromley Mencap suggested appointing ‘Parent Champions’ to support and represent other parent/carer volunteers within the organisation. However, it was noted that Parent Champions attached to the service may be unable to commit for long periods, may lose enthusiasm and need emotional support. Again, adequate support and training would be a crucial part of the workforce model to ensure that volunteers, as well as service users, were well supported in order to reduce the number of volunteers who leave the service as a high turnaround of staff would have cost implications.

Other challenges associated with the use of volunteers included a perceived lack of professional status by other professionals and also, particularly in the case of parents/carers, concerns regarding the feasibility of maintaining confidentiality of information, particularly when parents/carers may know each other locally.

Although the use of volunteer group may be cost effective, Amaze stated that it is important that volunteers are not be used as a ‘cheap’ alternative. Inspira suggested introducing a ‘minimum hours worked in order to be paid’ contract to allow the host organisation to ensure that the investment in training secured a return, and would allow parents/carers who were happy to provide some time on a voluntary basis to participate and benefit from the training.

ii. Permanent salaried professional staff Some VCS& P organisations and PPSs proposed using professionally qualified staff. The obvious benefit was that professionals were perceived to possess a detailed understanding of the current SEND system, and specialist expertise of supporting children and young people with complex needs, and their families.

The main perceived disadvantage of paid staff was, of course, cost. For example, Tower Hamlets PPS outlined a model recruiting new salaried Independent Support workers, who would rotate on a part time basis. Whilst the basis of comparison was not clear, the costs identified for this model were higher than their volunteer-based model. (£57,000 compared

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with £38,000). Telford PPS outlined three models which reflected the three workforce options (volunteer, professional, or mixed), with the most costly of the three being the fully professionally qualified and salaried workforce.

For this reason, most organisations who contemplated utilising professional staff envisaged them in mixed models, combining volunteers and paid staff24 25, rather than paid staff only, as this was deemed to be a more cost effective way to reach a larger number of families. A clear demarcation between the roles of paid and volunteer staff tended to be outlined in each option, with salaried workers taking on the more senior co-ordination role, reflecting their greater expertise, and more permanent working basis.

KIDS26 outlined the importance of pinning down a clearly defined and realistic role for the Independent Supporter. For example, they suggested that more complex cases, and those requiring longer term support, should be allocated to existing key workers, allowing the Independent Supporter to provide a targeted service to those transitioning from the SEN statements and Learning Disability Assessments to the Education, Health and Care (EHC) plan.

Just a small number of organisations identified models involving paid staff only. For example Action for Children identified a salaried professional-only approach; however, these staff would only support families who would be in most need of the service. This model would necessitate the early identification of such families who were likely to require additional support. The advantage of this approach would be that specialist staff could be recruited who have the skills, knowledge and experience to respond to the more hard-to-engage families. However, it would mean that the services would be less universal and more narrowly targeted than other models.

iii. Paid associates Contact a Family27 proposed a professional staffing model. However, rather than adapting existing staff roles or recruiting permanent staff, they proposed recruiting a dedicated pool of associates to undertake specific pieces of work in terms of EHC plans on a flexible basis.

The strengths of this approach included drawing upon a large pool of individuals with experience/specialisms in a variety of areas (Early Years/Health/Schools/Further Education/ Transitions). Within this approach, the Independent Supporter would be engaged/introduced in a phased process based upon developing local need, which would be beneficial in managing capacity and resources. However, careful co-ordination would be necessary to ensure effective management of such a large pool of associate workers and, for example, to avoid any cases ‘falling through the gaps’.

iv. Level of staffing The scale of staffing suggested by the PPSs (whether paid or volunteer) ranged from two 0.5 24 Inspira – workforce development options – mixed model approach, pg 33 25 Adviza – workforce development options – A (mix of voluntary/paid staff) pg 30 26 KIDS, workforce development option – 1A ,Outsourced advice and guidance pg8 27 Contact a Family –Independent Support Officer model, associate/seasonal option, pg 10

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FTE posts (Staffordshire PPS), to four FTE (Bristol PPS), 11 x 5 FTE posts (Norfolk PPS).

Some areas highlighted the importance of making an allowance for additional administrative support to be provided to assist the proposed expansion. As well as cost implications, potential pressure on existing organisational systems, such as HR, training, and data systems all need to be taken into account.

VCS&P organisations were less likely to have considered the scale of the workforce required.

The Seashell Trust highlighted that they would need to plan recruitment needs based on data from the PPS and the LA, taking into account information about existing capacity and demand. Others identified challenges in predicting the amount of support families would need, and therefore the level of staffing needed overall. Voluntary Action Leicester (VAL) attempted to calculate a broad indication of what the workload might look like based on the experience of the work of the pathfinder and the time parental support takes on average per case. VAL estimated a need for 25 Independent Support staff, but highlighted that many Independent Supporters are already available to parents/carers and families within the whole system, so not all such staff would need to be recruited.

v. Working patterns Reflecting the strong emphasis on volunteer workers, the majority of organisations proposed a part-time working pattern for the Independent Support workforce.

In this respect, staff capacity could comprise small amounts of time from each of a large number of individuals: for example 30 volunteers providing three hours each per week in Southwark is equivalent to between two to three full time staff. As highlighted above, this scale of volunteer workforce requires significantly more training and support than a smaller workforce of paid professionals, each working more hours.

A small number of PPSs proposed a mix of full-time and part-time staff. Having at least one full-time member of staff was seen to beneficial for ensuring some consistency across the week, and reducing the likelihood of ‘gaps’ in the service that might arise from part-time working.

vi. Allocation of tasks Parent Partnership Services went into some detail about the allocation of tasks for the Independent Supporter. KIDS28 outlined the importance of a pinning down a clearly defined and realistic role for the Independent Supporter. For example, they suggested that more complex cases, and those requiring longer-term support, should be allocated to existing staff key workers, allowing the Independent Supporter to provide a targeted service to those transitioning from the SEN statements and Learning Disability Assessments to the EHC plan.

A number of organisations proposed a sub-specialist Independent Support workforce where staff would exclusively support parents/carers or young people, but not both. For example, 28 KIDS, workforce development option – 1A, Outsourced advice and guidance pg. 8

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Staffordshire, Bath PPS and Southwark both proposed that the allocation of tasks for the Independent Supporter should be split between half working exclusively with parents/carers and half working exclusively with young people.

This split-service user approach would enable the service to respond to the requirements of families and young people identified within the consultation for Independent Supporters with the skills and experience to work directly with and support children and young people as well as their parents/carers. This approach also had the potential to help resolve conflicts of interest as staff could represent the best interest of each side and communicate their viewpoints if mediation was required.

Recruitment Recruitment strategies will be heavily dependent on the type of delivery model and type of workforce selected. Organisations provided limited details regarding recruitment strategies at this stage.

Core Assets suggested that a larger organisation is likely to have access in the first instance to its own range of volunteers, casual/associate workers and those who can be seconded additionally and quickly into local teams. Such organisations would also have a robust training, support and professional development programme to complement the core national training.

Operating across a whole region would also provide greater access to a larger resource pool of local organisations and agencies to work in partnership with on recruitment and training. It is likely that lead organisations would have a wider established network of local partners ready to be drawn upon to ensure the volume and quality of recruitment could be secured more readily.

For those organisations that would need to recruit, many suggested a staggered recruitment process. This was particularly important for those models where the Independent Support offer would be embedded into an existing service as recruitment would put a strain on services such as HR and pay-roll.

Deciding who would manage the recruitment of the Independent Support workforce was an important consideration. For example, Action for Children suggested a coordinator based within the lead organisation who could manage the process.

Amaze suggested that all recruitment panels had a parent/carer and young person representative as equal input and decision was an important aspect of their organisation’s vision. Securing this early buy-in from service users may also help to promote the service as one that is championed by service users.

KIDS recommend that all organisations adhere to a specific person specification so that a consistent level of staff was recruited.

It was stressed that organisations must consider their capacity to take on new staff, or adapt the roles of current staff, potentially partnering with another agency to lead on the recruitment if they were unable to do so themselves.

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They should also prepare for insufficient applicants for the post as it could be perceived as a limited role. Highlighting the skills and training associated with the role may help to overcome this.

Southwark PSS expected to work with neighbouring universities (from students studying relevant disciplines) and the local authority to recruit suitable volunteers which would strengthen the recruitment drive.

D. Modes of service delivery

All areas tended to offer some kind of telephone helpline and webbased information provision as well as face-to-face support meetings by appointment. However in addition individual areas proposed: i. Offering a flexible drop-in service ii. Offering interactive web-based support

i. Flexible drop-in service Bromley Mencap proposed an easily accessible ‘support-hub’ for families, which would operate within local schools, but with a flexible drop-in offer, but would be managed by a single, existing voluntary organisation. This option outlines a ‘drop-in’ service for families to get information, advice and guidance from Independent Supporters. The challenge with such a service is that it would not be an accessible format for all, and should not be seen to replace traditional services, but rather to complement them.

Southwark PPS29 proposed offering a drop-in service for families in order to assist parents/ carers along the EHC pathway. Based on local needs, the enhancement of an additional ‘by invitation only’ drop-in session would be offered to some parents/carers referred to them via triage who it might be felt would benefit from additional support. Drop-in services may encourage those families who do not engage in traditional routes to access the service in a less formal atmosphere.

This approach was associated with additional resource requirements, so that EHC plan meetings could be delivered at the same time as drop-in support. A potential risk identified was that in a drop-in situation there is a possibility that families will not get the one-to-one support that the spirit of Independent Support suggests. In order to reduce this risk, the service could offer appointment times at the drop-in so that parents/carers and/or young 29 Southwark – workforce development options – option 2,Who will provide the IPS? pg 7

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people could get advice each week from the same person in the same place. There was some concern that a pre-scheduled additional drop-in may not be convenient or accessible for parents/carers who were working or were in education. The suggested solution was to offer breakfast or evening appointments to these particular parents/carers.

ii. Interactive web-based support Bath PPS proposed the use of existing web-based services such as their ‘B-Zine’ resource (including B-Safe, B-informed and B-Active). These accessible and interesting resources would appeal to children and young people who may feel nervous or apprehensive about accessing the Independent Support offer.

Bromley Mencap also proposed a ‘virtual hub’ workforce option, where a small team of Independent Supporters would sit within an existing voluntary organisation. The service would include dedicated help lines, regularly updated website FAQs and information sheets on processes connected with EHC plans and transition phases, and live web chats and forums, which would be managed by the Independent Supporter sign-posting on to relevant organisations as necessary.

The confidentially of web-based services will need to be monitored extremely robustly as breach would lead to a loss of faith in service, and could be in violation of the Data Protection Act30. Organisations should ensure the service has a set of guidelines for users and that confidentiality was maintained by a registration process and password thus only allowing registered parents/carers, children and young people to use any online services which required sharing of confidential data.

Overall issues for design and delivery A range of broader issues were also raised as important to consider for the design and implementation of their Independent Support models, and these are discussed below.

‘Independent Support Officer’ as a unique and clearly defined role The need to develop Independent Support as a very specific, well defined and unique offer was considered vital by a number of organisations, in order to bridge gaps rather than duplicate or replace existing services.

A number of organisations queried whether Independent Support was about individuals acting as an Independent Supporter per se or whether ‘Independent Support’ is a concept – a set of skills, knowledge and information. Some seemed unclear what the precise expectations of the role were. Providing more clarity regarding the role and its purpose would be beneficial for organisations, and may help to manage expectations regarding the extent of what the service can realistically offer.

30 http://www.legislation.gov.uk/ukpga/1998/29/contents

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It appeared that many organisations had overestimated the role of the Independent Supporter; therefore, as well as managing the expectations of families, it is vital to manage the expectations of participating organisations too in order to ensure the service is not misunderstood, and as a result unable to deliver to high expectations.

Clearly explaining the unique function of the Independent Support offer to families would also avoid potential for confusion about its purpose vis-a-vis the large number of other agencies that they may be in contact with.

Requests for support are likely to come from a range of families, including those whose children do not meet the assessment criteria. In order to manage this, Independent Supporters would require a working knowledge of the Local Offer and eligibility criteria for services, and would work closely with other services that may be better placed to offer advice and support for particular families/issues.

Uncertainty regarding levels of demand and appropriate levels of capacity to plan for Some VCS&P organisations in particular, identified it to be difficult to predict the amount of support that families would need, and therefore the level of staffing needed overall. It may be that additional advice and support around this could help ensure delivery organisations develop an appropriate level of capacity.

As mentioned earlier, in this context, one organisation proposed to recruit a flexible pool of Associates, rather than permanent staff, to allow the service to adapt easily to developing levels of demand as the service became established.

Developing costed models and planning budgets Very few PPSs or VCS&P organisations developed accurate, detailed, costed models for Independent Support. It may be that organisations could benefit from advice and support regarding how to develop viable costings.

In this context, many areas were concerned about the disparity between the two year Independent Support Offer funding and the three year conversion timeframe for turning all current Statements into EHC plans. It would be important that government gave consideration for funding to support funding for year three conversations and new entries.

Considerations for achieving longer term sustainability: Many organisations highlighted that a key area of concern was the future sustainability of the Independent Support offer.

Although all organisations recognised that the Independent Support offer will be required to cover the specific period of change during the reforms, as families who are knowledgeable

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about the current system, as well as new families, will need initial help navigating the new one, the need for sustainability of the service beyond 2016 was identified as important for three potential reasons: i. the transition to the new SEND system is expected to take three years, yet the Independent Support offer is funded for only two years ii. many organisations and parents feel the Parent Partnership Service (PPS) is overstretched (enforced by context of substantive on-going budget cuts within local government), so there needs to be some level of sustainability of Independent Support, even if it does not need to be at the same level at which it is being delivered up to April 2016 iii. it is unclear whether the level of support that families will need after the new service is embedded can be met within the levels of pre-existing support capacity, particularly given that families will play a bigger role in decision making compared with the previous system and some may continue to need a higher level of support Some organisations anticipate that the Independent Support offer will induct parents into the new system and develop their resilience and skills, empowering them to manage their own choices for the future, so that their need for support will drop back to pre-change levels, however, others are less certain that this will hold true for all families.

Design option 2 will leave a legacy of supported parents and skilled Special Educational Needs Co-ordinators (SENCOs). This long term support, rather than crisis management, should be cheaper to the local authority because fewer families would need to go through expensive processes such as mediations and tribunals. With strong evidence of this we hope the local authority could be persuaded to increase the funding to the PPS by enough to sustain a reduced number of Independent Support Officers working in the mainstream schools. (Carers Resource)

•

The key to sustainability rests in the Independent Support Officer effectively becoming redundant, as one PPS Officer said “this is working to make yourself redundant�.

That is, to build the capacity of parents, families and children and young people to be knowledgeable and confident to make choices and to have a voice in the SEND processes. (VAL)

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The main points made by Voluntary, Community Sector and Private (VCS&P) organisations in considering future sustainability related to four core issues, which are discussed in turn below: i. Considerations for ensuring future funding ii. S ome delivery models offering more advantages than others in terms of long term sustainability iii. Maintaining the service at a lower cost iv. The importance of planning for long term sustainability early on, and incorporating exit strategies into planning v. Context factors that will affect sustainability

i. Considerations for ensuring future funding One organisation suggested that funding availability should be planned into the new emerging local delivery arrangements arising out of SEND reforms locally. For example, when local agencies are restructuring/realigning existing local authority resources to create new Local Offer, Support and Assessment Pathways, they should prioritise liberating funding to be allocated to Independent Support Officers on an ongoing basis for the future. In this context, some also highlighted how work might be undertaken to influence local authority outcomes based and integrated co-commissioning arrangements (either on a regional or individual basis) so that they include financial commitment to funding Independent Supporters from local authority children’s services and education, health and social care as a minimum, but ideally to include wider stakeholders such as; police, youth offending and schools.

However, other areas envisaged that future sustainability would need to rely on generation of funding from external sources by VCS&P organisations themselves. One area highlighted that because services would be delivered by voluntary or private sector organisations, these organisations could apply for additional funding from national funds such as Big Lottery. A number of organisations (including Adviza) highlighted their track record and considerable experience in securing funding, and a result suggested setting up the Independent Support offer as a charitable fund which could accept donations, as well as apply for grants on an ongoing basis over time.

In this context, some highlighted the benefit of applying for funding in partnership with other agencies when co-delivering, to maximize the weight of the proposal, whilst reducing the pressures on one organisation. As this model lends itself to working across several boroughs, the costs could be shared between several host organisations, which would once again result in an attractive partnership bid for future funding.

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The importance of collecting detailed evidence regarding the outcomes achieved during the project was highlighted as important for attracting future funding in this context. It will be important that local areas consider and set up appropriate evaluation and data collection arrangements from the start, and that national evaluation of the programme considers how best to support/avoid duplication with local evaluation and data collection. This may be an area in which organisations would benefit from support and guidance going forwards.

With strong evidence of [the up-stream cost-efficiency savings arising from the increased parental resilience arising from the new offer] we hope the local authority could be persuaded to increase the funding to the PPS by enough to sustain a reduced number of Independent Supporters working in the mainstream schools. (Carers Resource)

ii. Some delivery models offering more advantages than others in terms of long term sustainability Selection of the most appropriate model for implementing the Independent Support offer is important, if the service is to continue on in 2016. NDCS suggest a workforce model that relies on individuals occupying the role of an Independent Supporter is not as sustainable as an embedded or integrated model, in which organisations are up skilled and not just individuals.

Many discussed how sustainability could be achieved by developing the concept of peer mentoring, by encouraging parents who have been through the process to train as an Independent Supporter to voluntarily support other parents.

iii. Maintaining a service at a lower cost Several organisations proposed a volunteer led workforce, with many indicating that this would be the most cost effective Independent Support workforce model. The model relies heavily on the service of general volunteers and volunteer ‘Parent Champions’. Although less expensive then salaried professionals, resources would still need to be secured to continually recruit, train and supervise volunteers. Once training had been designed, it is possible that local parent forums could deliver this to reduce costs, however, updating and reviewing would need to be undertaken regularly and this would incur costs.

One organisation suggested that once the majority of children and young people have transitioned to the new system and have an Education, Health and Care (EHC) plan, the role of the volunteer could be reduced to one part-time member of staff being able to signpost families to other support.

Web-based modes of delivery were highlighted as ways of reducing costs. For example, one organisation outlined that once an effective mode of web-based support had been set up, and parents supported in learning how to use it, that support resources could then be reduced.

It is possible that parents and other volunteers could be trained to maintain this service, reducing the need for a paid post to a minimum for supervision and monitoring.

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Once the majority of children and young people have transitioned to the new system and have an EHC plan, the role of the volunteer could be reduced to one part-time member of staff being able to signpost to other support.

iv. Planning for longer-term sustainability early on, and incorporating exit strategies into planning Organisations were keen to stress the importance of successful new providers leaving a legacy, the plan for which should ideally be built into the overall model of delivery from the start. Plans should consider materials and resources that document good practice, operating processes, policies and effective pathways, ideally these should include coaching and shadowing opportunities as an exit strategy for the incoming volunteer or other workforce.

Many organisations were keen to manage the potential risks for families once the Independent Support offer draws to a close. Communicating with families about the remit of the offer will be essential in order to manage expectations.

Demand for similar support from the remaining PPS / VCS&P provider may outweigh capacity, again highlighting the need for early exit planning.

v. Context factors that may affect sustainability and effectiveness of the service over time One region highlighted that the effectiveness of the Independent Supporter role requires the continuation of the Early Support model, which isn’t a statutory service but is funded by local authorities. Continuation of the Early Support model would ensure that all new referrals for an EHC Plan would have the key working support that they need

Longer-term benefits of the Independent Support offer Although organisations outlined several challenges to achieving longer tern sustainability of the Independent Support offer, many also, positively, highlighted the potential longer term benefits of the Independent Support offer to their current offer.

The Independent Support opportunity brings 18 months of capacity-building; and skilling up of an existing workforce in some agencies, which was very much valued by participating organisations; shaping and influencing future plans, decisions and delivery of support services.

The associated learning from the set-up and implementation of the Independent Support service will provide a legacy of support, resulting in the service becoming part of the core service of support organisations.

One organisation felt that the Independent Support offer would help parents build trust in systems and processes, as they would feel more included, supported and empowered. It was felt that involvement with the service may lead to more families participating and continuing to engage with support services.

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2.1.2 Accessing services and support - children and young people’s perspective This section presents findings from consultations carried out with children and young people by twelve Voluntary, Community Sector and Private (VCS&P) organisations. Each consultation asked a range of children and young people their views on what worked well and what didn’t work well when making choices or accessing local support and services. To illustrate these findings, this section outlines what children and young people considered important when making choices or accessing support and services, illustrated through case studies and examples of local good practice. Practical recommendations on how the Independent Supporter should work with children and young people are also presented.

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Overview Involving children and young people in consultations • Many VCS&P organisations consider on-going meaningful engagement with,

and empowerment of, children and young people as one of the core elements of their service, and therefore, organisations conducted an impressive array of consultations with children and young people, not only through traditional methods such as surveys, interviews and focus groups, but also utilising more innovative and creative approaches such as residential weekends, video diaries and online consultations via social media.

•

Across consultations, children and young people voiced their desire to live independent lives, reflecting the foundations of the Independent Support offer, aiming to empower young people to make informed decisions for themselves.

Most likely taking this into consideration, many organisations focused on consulting with young people aged 16-25, in particular, as this is as period of important transitions where they may be making an increased number of decisions away from their parent/carer.

Young people as shared decision-makers • Largely, children and young people were more focused on the immediate

process of support, rather than the wider, or longer, processes involved within their journey. Independent Supporters must work with children and young people, and parents/carers, to prepare them for longer-term goals in order to create an atmosphere of empowerment which is sustainable going beyond the relationship and time spent with the Independent Supporter.

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•

With regards to the decision-making processes involved when accessing services, children and young people were adamant that that they should be involved as shared decision-makers, having their own voice and opportunity to make real and meaningful contributions to the conversation, as well as having input and guidance from the professional and their parent.

•

In order for children and young people to be heard, someone has to listen, and several children and young people stressed that ‘listened to’ was crucial to how they felt about the professional and the overall service. Many voiced frustrations regarding working with professionals in the past who did not listen to them and their parents.

•

Organisations which submitted early thinking regarding training for the Independent Support service workforce highlighted the need for an Independent Supporter to have experience of working with young people, especially those

with SEND. Key skills, such as taking a person-centred approach and building relationships and trust, were considered vital for any training package, and may be integral to the service in order to maximise children and young people’s confidence in it.

•

The first step towards achieving shared decision-making is to embed the ethos into the organisation’s culture in order for it to become part of the process. It is important for organisations to educate the workforce, and also parents, to value the voice and opinions of children and young people who want to take a more active role in the decision-making processes involved when accessing services.

Shared decision-making requires sensitive management and careful judgement.

Professionals must find ways of empowering young people and build on their strengths, striking an appropriate balance between protecting children, and supporting them to take the risks necessary for increasing their independence.

The manner in which both young people’s and parents’ expectations, which sometimes conflict in this context, are managed is pivotal to trust and confidence in support services as whole.

•

Training recommendations proposed by participating organisations include the need for negotiation and mediation skills which can prepare Independent Supporters to not only work directly with the children and young people, but also help them to challenge other services, and potentially parents, on behalf of the children and young people if required.

Supporting engagement Tailoring support to meet individual needs As well as taking a meaningful role as a shared decision-maker, children and young people wanted any services aimed at supporting them to be individualised and tailored to their needs.

•

Children and young people indicated that their family, school and carers were their main sources of information, but when involved with wider support services some children and young people wanted more information to help them make decisions in relation to both SEND reforms as well as more general access to support and social inclusion. Children and young people preferred to receive information verbally in the first instance, so they could ask questions to clarify their understanding, but also want some ‘take-away’ materials to allow them to digest the information at their own pace in their own time. These materials should be engaging, with a preference for audio-visual and visually stimulating written materials.

•

Knowing where to access information, if required, was important to children and young people so, therefore, organisations should have adequate information and materials, or have robust and up-to-date signposting. This requires staff to have a good working knowledge of other services.

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Support services Type of delivery method

•

Many organisations have started to introduce and increase their use of innovative methods of service delivery such as the use of social media and the internet. Children and young people expressed mixed views regarding the use of social media when looking for or receiving information to aid decision making.

For some, it was considered very positive, (for example, some children with hearing impairments valued interactive online communication) –but for others it was not a useful way to receive information. Children and young people were keen to stress that access to computers is limited for some, and many are not comfortable using technology in this manner.

•

Organisations should take into account the accessibility levels of children and young people within their area in order to decide how best to integrate online services, and not replace traditional services with online ones. However, only a small number of organisations suggested online services in the work-force development options, and all of these were complementary services to face-toface and telephone support.

Independent Supporter Choosing an Independent Supporter

•

Some children and young people stated a preference for being able to select an Independent Supporter themselves during the referral process. Some of the proposed workforce development models outlined options with this level of choice for families.

Qualities and skills of an Independent Supporter

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•

Many children and young people had worked with other professionals during their journey with other support services, and therefore were able to confidently communicate what type of qualities and skills they would like to see in an Independent Supporter.

•

Many of the desired qualities revolved about having good interpersonal skills, for example, being a good listener and communicator, and being able to understand the children and young people’s needs. They wanted to work with an Independent Supporter who was fun, friendly, trustworthy, and who could empathise with their experiences.

•

Independent Supporters should make the time to build a meaningful relationship with the children and young people they support, and demonstrate a strong understanding of their disability.

•

Other important qualities included possessing a good local knowledge about the

population so that the Independent Supporter could understand the viewpoint of the children and young people, and knowledge about services in the area so that children and young people could receive a comprehensive service.

•

Again, many organisations were also keen to stress the importance of developing the right workforce, with many proposing to up-skill existing volunteers who may be likely possess the desired skills in their existing job role.

Managing young people’s expectations

•

Service users want regular and long-term contact with the same individual who knows their circumstances and has gained their trust. These expectations would need to be carefully managed with a clear remit for Independent Supporters and the limitations of the service communicated to all stakeholders.

Ensuring Independent Support is joined up with the support provided by other professionals in children and young people’s lives to ensure a consistent and seamless services experience is also important.

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Consultation with children and young people VCS&P organisations were keen to emphasise the children and young people consulted were not one homogenous group and ‘one size does not fit all’ when working with children and young people with SEND needs. Approaches to gathering the views of children and young people reflected this to include a wide range of methods, outlined in Appendix B. In summary, approaches varied to include:

•

Paper, online and picture-based questionnaires

•

Small focus groups and a two-day residential weekend

•

Video diaries created by children and young people

•

Online consultations via social media, including Twitter and Facebook.

Consultations were carried out with children and young people aged 11-25 years old with a particular emphasis on older young people aged 16-25. Consultations varied in their focus, some had a more general focus on what young people considered important when making decisions or accessing support, while others asked young people directly about their views on the role of the Independent Supporter (for example, Contact a Family and KIDS).

A selection of featured case studies is presented in Appendix D.

What did children and young people consider important when making choices or accessing local services and support?

Across consultations, children and young people voiced a wish to live happy, fulfilled and independent lives, in which socialising, peer support, the smooth transition from child to adult services and securing employment or a voluntary occupation were considered to play a key role in achieving these aims.31

31 Amaze Brighton, What local children and young people say, pg.37,42 & 47

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Children and young people identified the following as important when making choices or accessing local support and services

•

A meaningful contribution to the decision-making process

•

Young-person led support and information with real choice

•

Ensuring children and young people’s views were heard as loudly as their parent/carer

•

Having enough information to make a choice communicated via channels and mechanisms that make it accessible to them

•

Having the right information and support at key times

•

Being supported by someone that they felt they could engage with and who had the necessary qualities, knowledge and skills

•

Having joined-up and consistent support that supported them with their full range of needs

A meaningful contribution to the decision-making process Children and young people highlighted the importance of having a real and meaningful input in the decision-making process when accessing services and support. A clear line of communication, with questions directed to the young person (not only their parent/carer) during meetings, was considered pivotal to ‘what works well’ by many.

Voluntary Action Leicester (VAL) consulted with over 40 children and young people through a range of methods, including online consultations via social media, to compile a list of ‘top ten priorities’ for children and young people. Meaningful involvement was considered a key priority by many, who recommended facilitating this through the following:

•

Building in time and capacity to involve young people in a meaningful way

•

Constantly feeding back and updating young people throughout the process

The importance of listening to children and young people’s views was illustrated by a case study with a young adult aged 20 with cerebral palsy and autism, who discussed his experiences of support received throughout his life and highlighted key aspects he found to be especially successful.32 Having his views listened to was key for him, and the few negative experiences recounted by the young person centred on times when professionals did not do so.

32 Voluntary Action Leicester, Case Study 4, perspectives from children and young people, pg. 68

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“It makes me angry and frustrated when people tell me what to do and don’t listen.”

(Young person, Voluntary Action Leicester)

Similarly, during a focus group with young people aged 17-25, led by Action for Children, young people discussed examples of when making decisions regarding accessing support or services had been difficult. The young people expressed frustration at a perceived lack of communication with the young person during key decision-making points by professionals in a range of situations. One young person reflected;

“The doctors and nurses use far too much jargon and sometimes they don’t even direct questions at you, they speak to your parent and this is really frustrating.”

(Young person, Action for Children)

Young person led support and information with real choice Children and young people were in agreement that they should play a role in the type of support they receive, which should be tailored to the individual needs and interest of the young person and recognise their strengths.

Contact a Family worked with an inner London youth facility to consult with children and young people with additional needs on their views. Fourteen young people aged 16-25 attended a weekend residential trip and reflected on the importance of young person-centred support from an early age. One young person commented, “Always remember, this is about our lives”, while another emphasised the importance of focusing on young people’s strengths:

“I get fed up with people telling me I can’t do things because I am vulnerable.”

(Young person, Contact a Family)

Children and young people indicated that the most useful information and support was given when the individual young person’s needs, wishes and thoughts were asked about and understood. Inspira carried out 49 face-to-face interviews with children and young people where they asked, ‘when you think of a person or organisation that has given you very useful or helpful advice and support, can you tell me what has made it so good?’ Being listened to was key to receiving the best information, as illustrated by the following young person:

“Talking to my adviser is good because they will ask me what I am interested in, listen to me and find out what I would like 46

to do in the future. They are then able to give me lots of good information about where I can do this.”

(Young person, Inspira)

While another recounted a situation where this did not work,

“Sometimes information I receive can be too general, not linked at all to my interests and what I want to do.”

(Young person, Inspira)

In addition to being listened to, the availably and communication of real choice was reported as an important factor when making decisions or accessing local services and support. Choice needed to be real, and if it wasn’t, this would also need to be communicated clearly so children and young people’s expectations were managed. One such young person commented.

“As long as I actually get a choice in the matter, then yes. If there isn’t a choice, then don’t bother asking.”

(Young person, Amaze Brighton)

Mencap Bromley highlighted a case study which illustrated the importance of choice and self advocacy for young people in decision making and accessing local services.33 In the case study, one young person accessed support and information around independent living from a local user-led Disabled People’s organisation. The approach the organisation used was considered successful because they personalised their service around the young person, presenting him with choices and allowing him to make the ‘difficult choices’ himself, which he found to be empowering.

“I needed to make sure that the things that I do weren’t being compromised by things I have to do at home, like paying bills.”

(Young person, Bromley Mencap)

“I had very good experience with my employment consultant and very positive feedback with my employment consultant and the people who appreciate my decisions and my choice of my future.”

(Young person, Bromley Mencap)

33 Bromley Mencap, Case Study, Achieving Independent Living through Peer Support, pg.73

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Ensuring children and young people’s views are heard as loudly as their parents/carers Whilst children and young people relied on and recognised the important role of their parents/ carers in helping ensure their needs were addressed, it is important that during the decisionmaking process the assumption isn’t made that the parent/carers knows better than the child.

It is vital that young people’s voices are taken seriously, including when their view of what is best for them differs from their parents/carers.

Action for Children outlined an example of local good practice, whereby a group of professionals worked alongside a 13-year-old boy to achieve his aim of moving from using a specialist leisure facility far from his home to attending a local, non-specialist leisure facility within his community.34 The young person at the centre of this case study wanted to meet local peers and feel part of his local community, though his parents/carers had serious concerns about moving to a non-specialist facility. Over a period of six months, the group of professionals successfully worked with the young person and his family to achieve his goal, and attributed it to the following factors:

•

Listening to the views of the young person and working with him to come to a realistic understanding of what was feasible

•

Including the young person in planning meetings; the young person gained positive experience by attending and contributing to these sessions

•

Working with the family to understand and accept their son’s wished to be in the local community, mindful of their concerns

In this example, the parent underestimated what the young person was capable of. However, by responding to the young person’s wishes and putting the right support in place, the young person was able to progress further towards independence.

Having enough information to make a choice, communicated via channels and mechanisms that make it accessible to children and young people A key message from children and young people across a number of consultations (for example, National Deaf Children’s Society (NDCS), Core Assets Children’s Services, Bromley Mencap and Action for Children) was the importance of having adequate, timely and easy to understand information to aid informed choices and decisions about accessing local services and support, especially considering the upcoming SEND reforms. Based on findings from a survey of 31 young people aged 10-18 years old, the NDCS reported that young people needed more or better information to help them make decisions, in relation to both the SEND reforms as well as more general access to support and social inclusion. Additionally, within Core Assets Children’s Services consultation, children and young people indicated that knowing where to go for information was important when making choices.

34 Action for Children, Case study 2, Young person’s perspective, - no page number available

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At the time of consultation, children and young people indicated that their family, school and carers were their main sources of information. While a young person-led support and information service was considered important, there was agreement across children and young people that parents/carers in particular played a huge role in helping them be informed. As the Carers’ Resource noted when it carried out an online survey with a small number of children and young people, “Well informed parents create well informed young people.”35 Children and young people expressed an interest in gaining further information in the following areas:

•

Policy changes and Education, Health and Care (EHC) plans

•

Their local offer

•

Accessing local services

•

Information on the roles of processionals around young people

•

Work experience and employment opportunities

•

Information to aid independence, including information on benefits, direct payments, managing money, and travel options

Overwhelmingly, across consultations, young people expressed a preference to receive information from someone they trust during face-to-face meetings, so that they had the opportunity to ask questions in an interactive way to support their full understanding.

There was also a clear preference for verbal interactive communication of information to be supplemented by information that young people could digest themselves and draw on at their own pace. This was apparent during a consultation with 78 young people between 10-25 years by KIDS. Group discussions focused on how children and young people could best receive information on the Local Offer. Young people were keen to stress how information should be presented and communicated through a number of ways to best meet the individual needs of each young person. Printed material should be visually stimulating, accessible, simple and free from jargon. These views were mirrored in consultations with young people coordinated by VAL, where providing information in a range of accessible and engaging formats was listed as a ‘top ten priority’ by children and young people.

In particular visual and audio visual formats were particularly welcome, including DVDs, videos online, leaflets and potentially online information, providing that static formats were easily accessible and engagement, for example, via use of pictures and images.

However, there were mixed views on the role of the internet and social media when looking for or receiving information to aid decision making. For some, it was considered a positive 35 The Carers’ Resource, Task 3 Evidencing what works well from a young people’s perspective to make choices in accessing services and support, pg 15

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way to draw from peers’ knowledge, illustrated by consultations with young people by Bromley Mencap who noted that websites such as YouTube were useful in this respect. For others, the internet was not considered a useful way to receive information. In their consultation with children and young people, KIDS noted that not all young people had access to or were comfortable using technology, warning against this assumption. Further, within their consultation with young people, Inspira concluded that some young people did not trust the internet as a way to receive information. During interviews, one young person commented:

“Not keen on telephone to strangers, Reading might be difficult on the computer. Better face-to-face so I can listen and talk better.”

(Young person, Inspira)

Having the right information and support at key times The children and young people consulted were unanimous in highlighting the importance of receiving support to make choices and access services during periods of transition, which included: the move from school to college, college to further education, education to employment and/or leaving their family home. Young people consulted by Inspira exemplified this concern for support when making choices about the future, as one young person commented:

“I …always think about what I am going to do when I leave school - therefore I think it is important to be able to access support when I require it.”

(Young person, Inspira)

Another young person echoed this statement:

“I need support when major things are happening.

Support around my future options and what I am going to do next is important at any time.”

(Young person, Inspira)

Being supported by someone that young people feel they can engage with and who have the necessary qualities, knowledge and skills Throughout consultations, children and young people outlined and discussed the type of person they would like to receive support from, what type of support they would like to receive 50

from this person, and when the support would be most needed.

A complex picture of the type of person they would like to receive support from was presented, which implied a need for those supporting children and young people to be assigned specifically to meet their individual needs in order to engage them most effectively.

One young person, consulted with by KIDS, reported wanting a supporter with the following characteristics:

“I want a PA, not a peer. Someone who can help me and understand what is happening. Not so young they can’t make things happen, but not so old that they don’t understand where I’m coming from.”

(Young person, KIDS)

While others, as exemplified by one young deaf person consulted by NDCS, reported that their one ‘wish/aim’ for support would to receive support from someone with a similar condition, to share experiences.

“I would wish for someone like [name] because he was deaf, understand what we were going through. The TA I have is very embarrassing because she really weird so I wish for someone deaf to help me like [name].”

(Young person, National Deaf Children’s Society)

However, common desirable knowledge, skills, and characteristics did emerge across consultations, including:

•

Knowledge of the young person’s individual needs, strengths and abilities: Young people surveyed as part of Adviza’s consultation identified knowledge of the young person’s disability and individual needs as a positive factor in previous support received, as one young person commented, “They seemed to understand what difficulties I was having and how to help me overcome them.” Young people were also keen to stress in a number of consultations that a supporter should also be aware of what the young person could do and what they were good at in order to help raise their confidence and expectations of themselves. In a case study from Scope36, the needs of a young person with autism who struggled with bullying in school were outlined. Recommendations as how best to support the young person focused on raising her aspirations through confidence building and emphasising what the young person was good at.

36 Scope, case study 3, Case study recommendations of what works well for young disabled people’, pg.60

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•

An in-depth understanding of local services: This was considered especially important in order to ensure they could inform children and young people about the full range of options available to them. Young people consulted by Action for Children also highlighted the need for support officers not only to sign-post and provide general information, but to also present individualised ‘options’ for young people when making choices. Young people discussed examples of negative experiences when professionals ‘artificially’ limited their options because of their lack of knowledge.

•

Excellent communication skills and tailoring of communications approaches: The ability to listen, clearly explain an issue, check the young person’s understanding in a supportive manner, and try another way of explaining if not understood was considered key by children and young people, as was keeping them informed at all stages. One young person consulted by Bromley Mencap reported a negative experience when communicating with a Care Manager, and this highlighted the need for those supporting children and young people to create a clear communication plan, including notes of each meeting, clear action points and responsibilities with realistic timeframes.37

•

Someone who is friendly and fun: The ability to relax, be friendly, warm, polite and create a fun atmosphere was especially important to young people, who envisioned a long-term and consistent, supportive relationship, as further discussed later. Children and young people consulted with by Amaze Brighton emphasised the importance of clear boundaries between young people and their supporter, but with the ability to ‘have a laugh’.

•

Someone who is trustworthy: For children and young people consulted by KIDS, having trust and confidence that personal information would not be shared widely and would be treated with respect was especially important. Young people consulted

by NDCS mirrored this, and highlighted the need for those supporting children and young people to have procedures in place and clearly communicate what sensitive information they would share with other services or individuals.

•

Someone able to advocate for young people and provide mediation: Commonly, children and young people discussed the role of Independent Support Officer as an opportunity for another person to be ‘on their side’ or act as a mediator if a disagreement arose between the young person and their parents/carers. KIDS consulted with children and young people to gain their views on future changes to the complaints and appeals procedures as part of the upcoming reforms, during which young people highlighted that they would like the Independent Support Officer role to act as mediator during these procedures if needed. One young person stated, “Not always happy with the decisions made by parents; a mediator could be in the meetings to help sort things out and the appeal time could be shorter.”

37 Bromley Mencap, case study 3.2. Negative Experiences of Transition to Adult Services, pg. 71

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Having joined up and consistent support that supports young people’s full range of needs Children and young people were in agreement across consultations that support should be consistent and should fit into and work with existing patterns of support (for example, parents, schools and carers).

•

Consistent support: Young people reported the importance of building up trust with one individual over time. One young person, who completed a survey for Bromley Mencap, commented that they wanted: “Someone consistent to talk to for support regularly; to be able to have a routine.” Having to answer the same questions and repeat themselves was noted as a common frustration by young people who had received inconsistent support in the past, as exemplified in a case study by Action for Children.38

•

Support that works alongside and complements existing support structures: Organisations which consulted with young people highlighted the need for the Independent Support Officer to work as part of a wider consortium around the young person, especially including their family/carers and school.

•

Providing practical support to aid independence: Young people were clear that support should not only be focused on providing information and supporting choice, but providing practical support. Many of the young people consulted were keen to become more independent and gain employment or voluntary roles, as well as greater control over their money and benefits. These young people reported a wish for an Independent Supporter to help them gain the confidence and skills to become more independent when travelling, support young people filling out forms and managing money in particular, as exemplified in Scope’s case study of a 15-year-old young person.39

Adviza outlined an example of local good practice relating to providing the support a young person needed in developing the skills and confidence he needed to take steps towards independent adulthood, and concluded with recommendations for how the Independent Support Officer could draw from the experience.40 The case study described a 16-year-old young person with Asperger’s Syndrome, who had completed his GCSE’s but lacked the confidence and maturity to successfully make the transition into employment. The young person began working a Specialist Transition to Employment Advisor to gain work experience.

The support was considered very successfully by the young person, their family and the organisation, as the following approach was taken:

•

The Employment Advisor worked in a person-centred and collaborative manner with the young person

•

Together, they created a clear goal and broke tasks down into manageable steps to best accommodate the young person

38 Action for Children, Case study 3, ‘my experience of receiving support to meet my needs- no page number available 39 Scope, Case study 1, case study recommendations of what works well for young disabled people, p.61 40 Adviza, local example of good practice- Connexions- Specialist Transition to Employment Support, pg 25

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•

The young person received consistent support from the same Employment Advisor, who came to visit him in his home where he was most comfortable

•

The Employment Advisor worked with the young person to build his practical skills to aid independence, undertaking travel training, planning a route to a voluntary position and supporting the young person when travelling initially

•

A successful relationship of trust was built between the two

“I was clear about your job, that made me feel different, made me feel good to know you could help me get a job…I needed an outsider to give me a push…you talked to me like an adult, you don’t speak down to me.”

(Young person, Adviza)

The feedback above highlights the importance of clear communication to young people about, and management of their expectations of, the role of the Independent Support Officer. As noted by Inspira, expectations by children and young people will be high for exceptional Independent Support Officer capable of “a multiple of skills and possessing outstanding qualities to deliver services well, and over the beyond of Independent Support Officer”. Service users want regular and long term contact with the same individual who knows their circumstances and has gained their trust. These expectations will need to be carefully managed with a clear remit and the limitations of the service communicated to all stakeholders.”

2.1.3 Accessing services and support – Parent’s perspective This section presents findings from consultations conducted with parents/carers by twelve Voluntary, Community Sector and Private (VCS&P) organisations. Several important themes emerged, and practical recommendations on what works well and what does not work well from the parents/carers’ perspectives, in support of making choices about or accessing local services and support, are outlined below.

A small number of organisations also consulted with senior representatives from the local authority regarding their perceptions of the Independent Support offer (including SCOPE, Contact a Family, KIDS, Inspira, Amaze, The Carers’ Resource, Core Assets and the Seashell Trust). Key findings from these consultations are reported throughout the chapter.

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Overview Involving parents/carers in consultations VCS&P organisations utilised a variety of methods to consult with a diverse range of parents/carers, including surveys, focus groups and interviews. In some areas, additional efforts were made to consult with Black and Minority Ethic (BME) groups and hard-to-reach groups, in order to capture a wider range of experiences representative of their local area.

Parents/carers wanted to be supported to be able to have more control in directing their lives, and therefore were pleased they ha d been consulted within this process, potentially impacting the development of the Independent Support Offer.

What doesn’t work well in support services?

Poor multi-agency working Parents/carers placed good multi-agency working high on the list of what makes a good support service, and they appreciated when this was happening. However, they were more aware when it was not happening as poor partnership working had often led parents/carers feeling frustrated, annoyed or confused.

This was illustrated by uncoordinated processes and a lack of collaborative working where agencies do not communicate or share information, forcing parents/carers to explain circumstances repetitively.

Lack of accessible communications materials Parents/carers felt the onus was left on them to find information, which is particularly difficult for those new to the system of Special Educational Needs (SEN), or with language or literacy difficulties, or who lack the confidence and/or awareness to source information themselves.

Waiting times/timescales A few parents/carers mentioned long waiting times to see consultants. This was especially difficult at times of diagnosis and when parents/carers were aware that early intervention was best.

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Services which are not person-centred Parents/carers condemned a one-size-fits-all approach. Parents/carers reported many instances of professionals not listening, or disregarding parents/carers’ wishes for their children. Practitioners were accused of failing to look at a family’s situation historically, offering generic services into which the child is expected to fit. Some parents/carers felt patronised. Where opinions clash, efforts should be made to explain in the context of a family’s circumstances and the available provision.

Geographical issues Parents/carers reported some difficulties accessing services, the scarcity of services in rural areas, and long and expensive journeys to access services were problematic.

Independent Support Confidence that Independent Support is truly independent Parents/carers wanted to feel confident that the support that they would be receiving from Independent Support Officer was indeed independent so that they could trust the advice they were being given. Some parents/carers reported feeling that some services operated in a culture of secrecy, and may not give accurate advice about what might be in their best interests due to funding restraints.

Organisations will need to provide clarity about how the Independent Support role is truly independent, especially if embedded into existing services such as PPSs.

Support during periods of key transitions Parents/carers wanted the delivery of Independent Support to be designed around key points when parents/carers feel it is most needed, including in the early years leading up to diagnosis and at educational transition points, but also need them to be available at times of crisis. Another key ‘stress point’ was the transition from youth to adult services and the perceived differences in attitude between child and adult social workers towards their young people.

Organisations may need to manage peaks in the Independent Support Offer, for example, the end of the school year, where young people and families may require an increased level of support, alongside the more continuous flow of new referrals throughout the year.

Preferred delivery approach

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Parents/carers wanted an individualised offer, with a particular focus on accessibility and flexibility. Being able to access out-of-hours support was considered important as many families have working parents/carers.

Suggestions for where support should be delivered included community based locations, for example, in schools and within the family home, indicating that parents/carers feel more comfortable about engaging with services when they are offered in a convenient, informal and familiar atmosphere. Most parents/carers did prefer face-to-face support, especially when support relationships are first being developed, but some were also open to other methods.

Organisations may find it beneficial to review the capacity of their staff to travel to engage with families, but also review their relationships with local settings and maximise on any existing relationships, and build new ones to better reach parents/carers.

Independent Support Officer Parents/carers as Independent Support Officers Most parents/carers placed high importance on peer contact and support. They felt that receiving advice and support from those who could relate to their own situations and experiences was invaluable in helping them feel supported emotionally, gain informal knowledge, feel less socially isolated, and increase their confidence. One-on-one peer support was considered a useful alternative to group formats for parents/carers who lacked confidence to access group-based services.

Organisations must consider the associated costs of implementing such a model though, for example, recruitment, training, and supervision.

Children and young people stated that they wanted some level of choice in which Independent Support Officer they would be working with, placing the onus of responsibility on them, mentioned earlier in section 2.1.2. Parents/carers, however, expressed concerns that they were constantly being expected to take the lead or initiate action, and felt that for those parents/carers with additional needs or who lacked confidence this was particularly difficult. In order to create an accessible offer for all service users, organisations must review their referral models and investigate how to reach those parents/carers who may not engage.

Many parents/carers said that there was limited awareness about the types of services on offer, and that more efforts needed to be made in order to reduce the likelihood that pockets of parents/carers may miss out on receiving support.

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Organisations may find it useful to reach out to other services which have contacts with parents/carers, for example, via Children’s Centres, in order to raise awareness about the offer.

Qualities and skills of the Independent Support Officer As mentioned above, parents/carers wanted to work with an Independent Supporter who would listen to their and their child’s voice in a meaningful way. As discussed, not being listened to was particularly off-putting for parents/carers and may cause them to disengage.

Many organisations outlined training in listening and communication skills as vital for the Independent Support Officer to be able to perform their role to a high standard. Having a good working knowledge of the procedures and processed involved with supporting children and young people with SEND needs was also considered to be vital. Parent Partnership Services (PPSs) outlined some proposals for training requirements, and their suggestions mirrored those made by both parents/carers and young people (see section 2.1.1).

Consistency of the allocated Independent Support Parents/carers may, at any given time, be working with a number of professionals and have to continuously repeat their case numerous times. Parents ideal support scenario would be a single key worker, who can support them with a wide variety of problems, and be there for them on a consistent basis over time. In this context, it will be important that the specific remit of Independent Support Officer is clearly explained, and expectations managed regarding the types of support Independent Support Officers can offer.

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Consultation undertaken Organisations used a variety of methods to consult with parents/carers, including surveys (both online and paper-based), focus groups, and individual interviews.

Most accessed parents/carers through their own or partner membership lists, client contact databases, attendance at events, and support groups.

For the purposes of this report, it is safe to say that those who took part in the consultation were parents/carers to children and young people with a range of conditions and levels of need.

It should be noted, however, that Action for Children commented that the parents/ carers they reached through PPS parent/carer forums were not reflective of the wider parent/carer group. They suggested that well informed and proactive parents/carers are often consulted, while those with additional needs, such as English as a second language, are less well represented. It is not possible to give an indication of how representative these consultations are of the wider parent/carer community.

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Consultations with parents/carers – emerging themes: i. Overall reviews of the SEND reforms and associated support needs ii. P romote and signpost opportunities for peer support information sharing and parental involvement in services iii . Ensure independent support is available iv . Provide consistent dedicated one-to-one support v. Delivery of support at key points when parents/carers feel it is most needed vi . A family-centred service which listens and responds according to the parent/carer’s and child’s views and support needs vii. Ensuring support is accessible through use of multiple and tailored approaches viii. Sufficient information provision ix. A ttributes and skills desired by parents/carers for an Independent Supporter x. Parents/carers’ views on Independent Support for young people

i. Overall reviews of the SEND reforms and associated support needs Several organisations asked parents/carers about their awareness and views of the SEND reforms (including KIDS, Bromley Mencap, and the Seashell Trust). Overall parents/carers said they welcomed the reforms to SEND processes and the ethos behind it, particularly the wraparound care from 0-25 years.

Some parents/carers expressed anxiety about the changes, mainly because lack of information about how they are being implemented. Parents/carers desired more information, for example, parents/carers consulted by Bromley Mencap said their main source of information about this had been peers or the voluntary sector rather than the local authority. Furthermore, nearly half (42 per cent) of respondents in NDCS’s consultation said they were not aware the government was making changes to how children with special educational needs and disabilities are supported.

One particular concern raised by some parents/carers (KIDS) was the extent to which local authorities will actually have enough resources to properly implement changes. Some were

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sceptical that parents/carers’ experiences might end up the same, but just with different forms. This may be related to parents/carers prior experiences of PPS services, which some perceive to have been constrained by funding and capacity issues.

This perhaps highlights the importance of ensuring that sufficient resources are allocated to support individual parents/carers, and that staff are trained and enabled to deliver effective engagement and support, rather than simply adhere to ‘new procedures’.

A few consultations (including the Carers’ Resource and the Seashell Trust) mentioned long waiting times to see consultants. This is especially difficult at times of diagnosis and when parents/carers are aware that early intervention is best. In particular, in some areas there are reportedly very long waiting lists for an autism diagnosis.

Success factors Organisations consulted parents/carers about what ‘what works well’ and ‘what works less well’ in terms of enabling them to make choices about, and access, local services and provision of support. This section reports on the main success factors that emerged based on these discussions.

ii. Promote and signpost opportunities for peer support, information sharing, and parental involvement in services A strong theme throughout all discussions was the value that parents/carers placed on peerto-peer contact and support. Peer support groups, led by parents/carers or supported by VCS&P organisations or other services, were seen by parents/carers as an invaluable source of assistance, with advice, support and empathy from those with experienced of similar issues/ circumstances.

A number of organisations reported parents/carers found sharing experiences with others who understood to be a useful emotional support, and helped them to feel they were not alone in dealing with their issues. For some, the social contact in itself had been important for addressing social isolation that some parents/carers experience.

Peer groups also provided opportunities for informal information sharing, development of knowledge and confidence in how to go about getting what they need from services, as well as emotional support. Parents/carers in Amaze’s consultation reported finding out previously ‘hidden’ information from speaking to other parents/carers. A number of parents/ carers mentioned that receiving advice from support groups was particularly useful around new diagnosis and applications for SEN. Another parent41 attended a workshop run by another parent about Learning Disability Assessment (LDA) and the process by which you apply for post-16 education. Encouraged to be proactive, she was able to challenge the draft LDA written by her Connexions Adviser, until she was happy with it. The parent felt that without the workshop, she would not have been able to get her child the placement he wanted.

41 Case Study 1, Carers’ Resource, Case studies of good local practice experienced by young people, p.18

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Parents/carers consulted by Amaze indicated that parent/carer groups are an ideal forum for services to deliver learning opportunities to parents/carers because of the benefits of sharing perspectives during the process of learning and practice of new skills. The Carers’ Resource consultation also concluded that the most active peer support groups appear to be the ones run by, or visited regularly by, professionals and asserted that support groups could be helped by having premises provided for them, and relevant professionals being able to attend occasionally.

The importance of parents/carer groups as a source of information was highlighted during interviews with 20 parent/carers during Scope’s consultation.

“I went to a support group and luckily there was a lady there who could help with SEN statements. If it wasn’t for her sending me a template it would have been twice as hard. I was lucky to have that to fall back on. It was easy just to drop in to one of their sessions at the library. They don’t get paid for their time but they really helped me.”

(Parent/carer, Scope)

Another parent emphasised the importance of parents/carers continuing to share their knowledge with others throughout their journey:

“I’m still learning and finding things out now and I share that as much as I can with my contacts, because otherwise that info doesn’t get out there – it just isn’t in the public domain”.

(Parent/carer, Scope)

Peer support can also be provided on a one-to-one basis, and is particularly useful for reaching out to parents/carers and to build the confidence of those who lack the confidence to attend parent/carer groups. For example, KIDS outlined a case study of family support delivered via a parent-to-parent Befriending Service42. This was found to have resulted in a reduction in the parent’s isolation, enabling them to explore emotions, and gain practical advice and confidence. This also resulted in the parent joining a parents/carers’ forum for continued contact with other parents/carers.

Given the strong value that parents/carers place on peer engagement, Bromley Mencap, recommended that the Independent Support Offer could be built upon a peer support approach, where the offer equips parents/carers with the skills they need to not only navigate systems, but also to facilitate training to develop peer support approaches to provide parents/ carers with a longer term support base. It was felt that this could reduce the likelihood of parents/carers’ dependence on Independent Support Officer while also providing a valued 42 Case Study 2G, KIDS, Supporting a parent through a parent to parent Befriending Service, pg 59

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source of information and support for parents/carers. Scope’s consultation also resulted in their recommendation that Independent Support Officer could promote peer networking, signposting parents/carers to peer/support groups as well as information workshops. Action for Children agreed that Independent Support Officer should have knowledge about, and contacts with, other parent/carer support forums and speciality groups and share this information with parents/carers (Action for Children) In some areas, the benefit of parents/carers’ action and involvement in developing services was highlighted. A number of areas identified parent/carer involvement forums which played a key role in facilitating parents/carers input into service development. More spontaneously, one support group in North Buckinghamshire43 met their children’s group’s need for regular speech and language support by commissioning it for themselves. This highlights how parent/carer led organisation can be a powerful mechanism in enabling parents/carers to access what they need for their children.

However, it is worth pointing out that peer-to-peer support is not a priority for all parents/ carers. It appeared that parents/carers consulted in Cumbria had not accessed advice and support from the established parent/carer forums there, despite evidence that they are highly valued by their participants. Only three per cent of respondents in Inspira’s consultation ranked other parents/carers as useful in the provision of advice or support. Parents/carers consulted by NDCS indicated that parent/carer forums were only their fourth favoured source of support.

iii. Ensure independent support is available Parent/carers in many consultations revealed that the perceived independence of the provision was an important factor in whether they trusted the support and information provided. For example, almost all parent/carers (95 per cent) surveyed by KIDS agreed it was important to have the choice of someone who was independent to talk to.

One parent surveyed reported the following in response to the question, ‘what type of support do you think you might need during the Education, Health and Care (EHC) planning process?’

“Having independent advice, information and support. I love the idea…and this offers us the opportunity to work in the best interest of our now teenage son. You need more people who are professional and have great communication skills working with a range of people including parents. The professionals should not be afraid of power and control of the local authority. The professional should be totally independent and work in the best interests of the child and family. The professional should be an all-rounder and experienced in working with challenging situations. The professional needs to 43 North Bucks Down’s Syndrome Group, Adviza, Parent/Carer’s perspective, p.47

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have a good working knowledge of the education system and legislation.”

(Parent/carer, KIDS)

While Parent Partnerships are generally highly regarded, parents/carers in a number of consultations felt that the PPS position within local authorities may contribute to a lack of complete transparency in information and service options, and as a result did not always trust them to give the best advice. For example, some parents/carers in Adviza’s consultation also felt there was a culture of secrecy around service provision, and a reluctance to inform parents/carers of options. Some parents/carers consulted by the Seashell Trust felt the PPS has not been supportive to them in challenging the local authority in this context.

Several of the proposed workforce development options, (see section 2.1.1), suggested embedding the Independent Support offer into their existing services and would benefit from reviewing and understanding the perceptions of families about their relationship with the local authority and how it may affect families’ engagement.

Independence from statutory services would reassure parents/carers that provision of services and support is based on a commitment to meeting children and young people’s needs rather than the interests of the LA, or budgetary considerations. Such views illustrate a degree of mistrust of statutory services, for example, some parents/carers in the Seashell Trusts’ consultation felt independent educational psychologists and therapists provided more thorough and accurate assessments than those provided through statutory services.

In general, parents/carers’ feedback from a number of organisations (including Scope, Advise, the Seashell Trust, Core Assets, Action for Children and Bromley Mencap) suggested there was a an opportunity for practitioners who are independent of the local authority to deliver valuable information and support. Indeed, parents/carers consulted by Core Assets identified their most critical requirement for the Independent Support offer was independence from the local authority and other statutory services.

Ensure effective multi-agency working While a number of parents/carers mentioned the need for good multi-agency working, fewer specified what this looked like or gave examples of good practice.

It is generally agreed that parents/carers appreciate it when it happens. For example, the parents/carers consulted by Scope were positive about the fact that key agencies they were supported by worked well together and had good communication channels.

By contrast, a lack of joined up working or consistency between agencies can waste parents’/carers’ time and energy, and cause frustration and potential confusion. The Carers’ Resource reported that some families were frustrated and felt their child was being disadvantaged by being told that they were not entitled to services while others, that they perceived to have similar needs, were accessing them. Most commonly, many parents/carers

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reported frustration at having to repeat the same information to various professionals.

Parents/carers from Action for Children reported a need for professionals who communicate effectively with each other. Effective collating and sharing of information prevents duplicate requests for the same information from parents/carers. As discussed above parents/carers felt another means of avoiding this would be having a dedicated worker.

Amaze reported on parents/carers who have been trialling the new EHC plans. Though at an early stage, parents/carers reported good examples of joined-up working and communication among different professional groups, such as:

•

Effective team around the child meetings which were clear and focused on children’s needs

•

All professionals working from same paperwork

•

Professionals meeting each other face-to-face at meetings to discuss individual children and young people

•

Good relationships between parents/carers and the professionals involved with their child, including the planning co-ordinator

•

Home visits which enabled professionals to see the child’s behaviour in the home environment

As will be discussed, one essential skill for Independent Support Officer identified by Core Assets’ parent/carers is the confidence to work across education, health and social care and/or provide specialists as needed for particular needs.

Evidence also highlighted how the effectiveness of multi-agency working can have significant implications for families and the level and quality of support they received. A comparison of EHC plan processes for her two children (one which went well, and one which went less well) illustrates one mother’s experience of variation in multi-agency working in practice44.

Scope found during consultations with local authority representations that provision of support is perceived as inconsistent across specialist and mainstream settings, therefore the Independent Support workforce must ensure that, if working in partnership with other organisations, that the service across agencies is consistently high.

Effective support to ensure joined up working was also highlighted to be important to avoid challenges accessing services across local authority boundaries. For example, parents/ carers in Yorkshire accessing health services in one area, with social care services in another, found themselves caught in arguments about which service had funding responsibility.

Challenges for joined-up working can also arise where children live in one local authority area, but attend school in another.

Scope gathered evidence from two local authorities, and found that when schools worked with 44 Case Study 1, Contact a Family, Case studies, Appendix A

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families from different local authorities, boundary issues can hinder children receiving support they need to make negotiations more complex for all involved, including parents. A useful case study outlining the processes involved in cross border working is presented in section 2.1.4.

iv. Provide consistent, dedicated one-to-one support In Scope’s consultation, parents/carers with children who had been in the SEN system longest reported experiences of having one-to-one support in the past through a nominated Key Worker. They reported it was of great benefit to have a dedicated point of contact for any queries or concerns, boosting confidence and helping them to cope with the challenges of parenting children with special educational needs and disability.

While funding restrictions mean that there are now fewer dedicated key-worker services, other parents/carers (for instance from the Carers’ Resource) had sometimes found a professional, whether voluntary or statutory agency, who was willing to act as a key worker to whom all problems could be brought. They identified this as the most useful support overall. Parents/ carers in other consultations (for example, the Seashell Trust), even if they had not experienced dedicated support, expressed strong wishes for this to be put into place within services.

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•

Mirroring the parent/carer perspective, following their consultations with local authority representatives, Scope reported that when provision has been split into clusters, it is not always clear who is the appropriate person to contact in the local authority which can lead to assumptions surrounding support for families.

•

Parents/carers suggested a number of benefits to having a dedicated case worker or contact, including:

•

Having a single point of contact ,so parents/carers do not have to repeat themselves (Scope, the Seashell Trust)

•

Having one person responsible for providing an overview of processes and available services. The Seashell Trust’s parent/carers reflected that many practitioners were helpful for certain pieces of information but no one helped with the ‘bigger picture’.

This may be especially important in areas where parents/carers access services across borders, according to the Carers’ Resource

•

Consistency in support which allows one person to have an overview of the families’ needs, a personal support person who could support them through the process, and provide ‘knowledgeable guidance’ with all aspects (the Seashell Trust)

•

Many parent/carers spoke of wanting someone to lead them through the process, or be alongside them through all aspects (Action for Children, Voluntary Action Leicester (VAL)). Ideally this involves visiting families, signposting them to other services and accompanying them to meetings with other professionals

•

In this context, it will be important that parents/carers’ expectations are managed with regards to the limited role that Independent Support Officers are likely to

play, and with regards to the fact that, within the new system, parents/carers are still likely to have multiple points of contact. For example, key players for any one parent/carer might include: the local authority lead responsible for their plan; the Independent Support Officer; and potentially, if relevant, a key worker and/or PPS support worker (if for example, they require independent support or advocacy regarding a specific issue outside the scope of the main plan).

•

Following their consultations with the local authority, Amaze highlighted the work of the South East Seven (SE7) pathfinder, a group of 36 local authorities within the South East area. SE7 were keen to stress that feedback from parents’ forums and school staff indicates that the majority of families are not aware of the changes to SEND reforms and how they might affect them; work is still needed “so the words on the page can be translated into real change on the ground,” to help families understand how the reforms will affect them, including the Independent Support offer.

•

The Seashell Trust found that only five out of 16 local authority representatives were aware of the Independent Support offer indicating a need to increase awareness of the offer, and help to address potential misconceptions about the offer as well.

•

Based on consultation with local authorities,45 Contact a Family reported a sense of disappointment that the Independent Supporters were not an additional resource for them, particularly around the looming pressure of converting existing statements. The Seashell Trust found that stakeholders expressed concerns regarding the introduction of the new external role and function at a time when they will be reorganising their structures internally to meet the challenges in delivering the SEND reforms. Again, providing clarity that the Independent Support offer is aimed to be a support may help to alleviate misconceptions.

v. Delivery of support at key points when parents/carers feel it is most needed Parents/carers from many organisations identified that what works well for them is receiving support at particular times of need. These tend to be around times of diagnosis, applications for statements of SEN and at various points of transition, especially starting, changing and leaving schools and moving from child to adult services. Parents/carers identified the following key times when they want support:

•

At the time of diagnosis, if not beforehand. It is important for parents/carers that information, and emotional and practical support are provided quickly at this difficult time when they are dealing with the implications of diagnosis. Action for Children suggested parents/carers need time-limited emotional support during their adjustment to their child’s needs and prognosis.

•

When applying for a statement of SEN, especially if this is the first application once a child has been diagnosed. Parents/carers from Scope indicated that this is particularly needed if the first application is for an older child, when it was sometimes found that schools seemed to be unwilling to listen to or respond to concerns, and

45 Following a 10 week pilot project to deliver an evidence-based report into developing three practice models for developing an Independent Support offer within local authorities.

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there was perceived to be a higher chance of being rejected.

•

Some parent/carers consulted by Scope indicated that dedicated support is especially important for those who are new to the SEN system, providing support around diagnosis and SEN statements. Once familiar with processes and SEN, the need for such dedicated support decreases. Various case studies outline examples where parents/carers have struggled in the process of applying for their child’s first SEN statement. In contrast, one parent46 found this process simple because the family had a dedicated key worker who provided ongoing and consistent support during and after this process. Key elements of the support included accompanying them to meetings, and developing a relationship with the family to understand their needs well.

•

When making amendments to SEN statements. Scope’s parents/carers reported being ‘scared to rock the boat’. Others found making amendments difficult, and felt they were not listened to by schools or professionals from various agencies.

•

During SEN Appeal processes. Parents/carers from Scope identified this as a very stressful time.

•

Early support during the EHC planning processes, in the transition from SEN statements. The preference is for face-to-face support before engaging with other services.

•

Prior to planning and review meetings, and preparation for any meetings where decisions made would have a significant impact on future provision.

•

Education transition points, including entry to nursery, from nursery to school, changes in school provision. The Carers’ Resource provided an example47 of valuable support provided by a school’s full-time family link worker who provides extra support when a child is approaching transition. The parent reported a seamless transition from nursery to infants and infants to juniors for her child with complex needs. The need for support during education transition points was highlighted by a number of parents/ carers during Inspira’s consultation. When asked ‘when would parents/carers need the most advice and support’, one parent commented, “The transition from primary to secondary school and getting the best school to meet our child’s needs. Year 11 transition to college or work. Looking at all the appropriate options and selecting the best route forward to move our child towards independence.”

•

Transition/post-16 support. Many organisations (including KIDS, Scope, the Seashell Trust) reported on parents/carers’ need for support and guidance around the post16 transition, citing a shortfall of professional expertise in this area. Parents/carers need guidance negotiating the various options and learning paths. They also reported parental confusion over benefits, and school transport options. A useful case study regarding LDA support is presented in section 2.1.4.

46 Case Study 3, Appendix K, Providing dedicated support, Scope 47 Case Study 2, Carers’ Resource, Nursery/Infants/Juniors- Smooth transitions, pg 11

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•

Transition from child to adult services. Parents/carers generally welcomed wraparound support to age 25. Adviza noted that there appeared to be increasing frustration with systems, processes and those offering support from some parents/ carers as their children get older, this is particularly the case around the transition to adulthood phase. Parents/carers consulted by Contact a family expressed concern about the ‘cliff-edge’ of the process of transition to adult services and perceived difference in attitude between child and adult social workers towards their young people. A case study from Inspira48 illustrated the value of the support provided to one family in the transition of a strategic provision at the end of Year 14 to a Local College of Further Education. Critical factors were seen to be the relationship and trust between parent/carer and voluntary sector personal advisor, alongside good multiagency communication and commitment to meeting the individual needs of the young person.

•

Support at crisis points, even if this is not at any of the key points described above. One case study49 illustrates how a mother was supported at a time of crisis.

A voluntary agency provided co-ordinated support with a dedicated family worker, liaising with agencies to meet a wide range of needs including Disability Living Allowance application and appeal, accessing peer support, access to respite care, identifying and transitioning to education, and signposting to training to better understand her child’s impairment. The support provided empowered the mother and increased her confidence, thereby enabling her to continue to care for her child.

•

On an ad hoc basis, for example, when completing paperwork and writing reports, or when parents/carers might need support in understanding processes and terminology when negotiating for or using services (the Seashell Trust).

48 Parent Case Study 1, Inspira, Children’s Centres in Cumbria, pg 36 49 Case Study 2.4, Bromley Mencap, Help in a time of crisis, pg 57

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vi. A family-centred service, which listens and responds according to the parent’s/ carer’s and child’s views and support needs Parents/carers want timely and accurate assessments that respond to the views of parents/ carers and the needs of the child and young person.

Inspira provided a positive example of this happening successfully50 where a bespoke package of support was tailored to the specific needs of a young person transitioning to adult services, and arose out of effective collaboration with family, health, social care, and education teams.

However, many examples were given of services which failed to respond to the individual needs of the child or young person or their families, or where the full range of needs were not reflected in the final statement (Action for Children, the Seashell Trust). In this context some parents/carers condemned a one-size-fits-all approach that they felt had been adopted by some agencies with which they had had contact. One such parent, consulted with by Inspira, commented in response to the question ‘when you think of people or organisations who have failed to give you useful or helpful advice or support, what kinds of things were wrong?’

“When organisations don’t make time to get to know your child, don’t listen and have a one-size-fits-all approach.”

(Parent/carer, Inspira)

Practitioners consulted by Inspira confirmed bespoke individual support packages are important. Practitioners need to ask parents/carers and young people in person, listen to what they say and respond accordingly. Parents/carers reported many instances of professionals not listening, or disregarding parents’/carers’ wishes for their children. Some practitioners were accused of failing to look at a family’s situation historically, offering generic services into which the child is expected to fit. Some parents/carers felt patronised in this context. It was also stressed that when practitioners want to propose something different to what families were saying they wanted, efforts should be made to explain why the alternative is most appropriate in the context of the family’s circumstances and the availability of provision (Inspira).

vii. Ensuring support is accessible through use of multiple and tailored approaches Inspira parents/carers commented that they want to be supported to have some control in directing their lives. In this context, services need to be responsive to parents’/carers’ differing needs in terms of the support required to access services.

Core Assets pointed out that parents/carers of children and young people with complex needs can often have additional needs themselves and require extra support to access the Local Offer, but complained that actually there was often a lack of sufficient support for parents/carers in these circumstances. By contract, KIDS51 provides a positive example of how 50 Parent/Carer Case Study 3, Inspira, People First, pg 41 51 Case Study 2F, KIDS, Supporting a parent with mental health issues, pg 57

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a parent with mental health issues was successfully supported. Information was available to all, no matter what their communication needs or level of understanding. Families of deaf children and young people indicated that face-to-face meetings are not always the most appropriate delivery method, and that email, website provision and social media are sometimes preferred in this context.

Services also need to be culturally appropriate, with facilities for those with English as a second language. Adviza outlines the operation of support group52 set up to address issues of cultural and language barriers which was affecting parents’/carers’ access to support/information.

One support group specifically for Asian women was set-up to address issues of cultural and language barriers which were affecting their access to services.

However, to provide a negative example, one case study53 presented by Bromley outlines the impact of having English as second language on a family supporting a child with special educational needs and/or disability, where cultural misunderstandings and assumptions were thought to have hindered parents/carers receiving adequate support.

Several consultations (including Adviza, Inspira) pointed out that services must take into account the diverse needs in different geographical areas, acknowledging variations in local needs and the nature of the transport infrastructure and location of services that determine accessibility, especially in large rural areas. For example, parents/carers (the Carers’ Resource, Inspira) reported some difficulties accessing services and a scarcity of services in rural areas, and how long and expensive journeys to access services are problematic.

viii. Sufficient information provision

In order to make choices about or access local services and support, parents/carers need to be aware that they exist.

Many parents/carers felt they lacked accessible information. For example, many described how they felt the onus was left on them to find information, which is particularly difficult for those new to the system of SEN, or with language or literacy difficulties, or who lack the confidence and/or awareness to source information themselves. Some parents/carers mistrust professionals (Scope). The Seashell Trusts parents/carers reported that limited access to information and support meant they did not understand the significance of the process.

In one case study54 a mother accessed a workshop on SEN applications by chance, while struggling to complete the child’s first SEN statement application. She felt the availability of such support should have been made clear by the various health professionals involved in her child’s care.

Parents/carers identified a number of issues which they currently struggle to access information about, and where they feel information for parents/carers should be 52 Case Study FACT Bucks, Adviza, Parent/ Carer’s perspective, pg.65 53 Case Study 2.3, Bromley Mencap, Family where English is a second language, pg. 52 54 Case Study 2: Informing & Empowering Parents, Scope, Case study recommendations of what works well for young disabled people, page 71

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improved. These include information on: school choices; school transport; personal budgets; access to short breaks; flexible support focused on needs of dads (the Seashell Trust); leisure opportunities for children and young people with SEND; direct payments; and rights in the education system. Parents/carers in Bromley Mencap’s report identified support with obtaining Direct Payments as one of the most important areas where they need information and support to ensure their children can access the support they need and that parents/carers can access respite for themselves.

Parents/carers’ preferred delivery approaches for the Independent Support Offer Based on their experiences of current and past services, parents/carers expressed views of how a new Independent Support Offer could be delivered to meet their needs. Reflecting many of the themes discussed above, the following aspects were highlighted, centring around accessibility, flexibility and tailoring of approaches:

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Delivery outside working hours to meet the needs of working parents/carers.

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Independent Support Officers being housed in easily accessible and central premises, but also able to visit at home, community venues and accompany parents/carers and children and young people to meetings to support them in ensuring their views are heard and receive an appropriate response. Adviza recommended that Independent Support is based within community settings such as schools or Children’s Centres, which are familiar to parents/carers, and are often used by those who are hard to reach.

•

Flexible delivery e.g. by telephone, email, in person, direct support at meetings, community venues, and provision of interpretation services according to parents/ carers’ needs. Most parents/carers reported preference for face-to-face interventions, and practitioners consulted by Inspira also felt they are the most successful. Some parents/carers indicated that this is important at least until relationships have been established, at which time more remote methods of contact can be used, for example, email and phone. Parents/carers reported that they access online resources as a first step in gaining information but when requiring more than information, access to support and advice needed to be face-to-face (Inspira). However, some parents/carers, including parents/carers in NDCS consultations, prefer other means of communication.

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Promote the Independent Support widely in different formats. Adviza parents/carers indicated that preferences for receiving information vary, suggesting that information about the Independent Support itself needs to be accessible and available in various formats across a variety of settings including doctors’ surgeries, Children’s Centres school, libraries and other community settings.

•

Timely delivery including completion of actions within agreed timeframes, and timely responses to enquiries, requests and service need.

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Deliver a dedicated support role. Many parents/carers saw the Independent Support

Officer role as a specific key-worker type role to support parents/carers one-to-one.

Parents/carers’ views of the high value of dedicated support was discussed earlier.

ix. Attributes and skills desired by parents/carers for an Independent Support Officer Based on their experiences of what has worked well in local support services, parents/carers across consultations agreed on a range of skills and qualities required from an Independent Supporter

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Empathy and an understanding of the impact of a child with disability on the whole family, preferably with knowledge of their child’s condition or relevant personal experience around processes associated with diagnosis and securing of services.

Bromley Mencap’s consultation illustrated that personal experience was equally as important to parents/carers as knowledge of legal process around the EHC plan and the Local Offer. Understanding parents/carers’ needs was identified as the number one requirement by parents/carers in Adviza’s consultation. Several VCS&P organisations, including Adviza, Scope and the Seashell Trust, suggested experienced parents/carers could be trained to become Independent Support Officer

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Ability to listen without judgement

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Credibility with professionals and parents/carers

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Good communication skills, as well as the interpersonal skills to work with young people across the age range of 0-25 years with different types of needs

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Cultural appropriateness, being representative of the communities in which they are delivering support

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Knowledgeable. Parents/carers want a ‘good all-rounder’ or ‘a one-stop-shop for information on all aspects relating to their child. An Independent Support Officer will need to show an understanding of disability and impairment, policies, protocols, legislation, local education systems, assessment processes, benefits, health, social care, Direct Payments, EHC plans as well as an in-depth knowledge of the Local Offer.

Parents/carers in the Scope consultation felt an Independent Supporter would need to specialise in different areas for example, early years, post-16, new applications but not disability type. The Seashell Trust parents/carers would like an Independent Support Officer to be able to signpost to additional sources of support and information, not just those available locally.

•

Experienced in assessment and coordination (Contact a Family)

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Have strong advocacy skills – be able to challenge local authorities, and various professionals to act as an advocate for parents/carers. Scope’s case study gives an example of where this was needed 55

55 Case Study 1: Advocacy – “Having someone on your side”, Scope, pg.71

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•

Be passionate (Contact a Family)

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Be able to work across multiple agencies. The key attribute identified by Core Assets’ parent/carers is the confidence to work across education, health and social care, and/or provide specialists as needed for particular needs

The Adviza report gives an example of support group facilitation which illustrates some of these key qualities parents/carers feel are required by an Independent Supporter56.

Following consultations with representatives from the local authority, Contact a Family shared concerns that there is no scope for development period where relationships between the Independent Support Officer and the service user can be built on and nurtured. As all organisations valued the importance of building a good relationship with families, it is vital that time for the Independent Support Officers to get to know the service user be allocated to them.

x. Parents/carers’ views on Independent Support for young people While parents/carers felt that engaging children and young people to allow them to have a say is a positive approach, they agreed that final decisions should be left with parents/carers.

They expressed concern that young people do not always make the most appropriate decisions about their care, say what they think people want to hear, struggle with self-doubt in relation to their condition(s). Independent Support Officers would need to be skilled mediators, experienced in working with a range of children and young people, and would require time with each young person to build up the required relationship and familiarity to enable the young person to fully contribute (KIDS).

56 Parents Support Group Lane End, Adviza, Parent/ Carer’s perspective, pg.50

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2.1.4 Effective protocols and practice for local delivery To celebrate and share good practice and learning from the many experienced, knowledgeable and innovative existing support services across England, participating organisations were tasked with identifying and outlining three case studies of good local protocols and practice.

The intension was to facilitate the sharing of experiences in order to spark ideas and create awareness of new or different practices that individual areas may wish to draw on in developing their Independent Support offer.

The remit was intentionally broad and organisations were invited to submit contributions relating to any area that they felt to be important for contributing towards effective and joined-up working in the development and delivery of local Independent Support Offers.

A total of 55 case studies were provided from the 25 organisations participating in the research, ranging from service and engagement approaches, to family/child journey case studies.

Case studies covered an extensive range of topics, each of which will be relevant to different organisations, depending on local needs and context, the nature of the organisations’ own experience and expertise, the type of support offer being developed, and the stage at which they are at.

In the course of responding to other aspects of the Evidence and Build research, a number of organisations also presented detailed ideas for how processes and protocols relating to referrals and allocations of Independent Support Officer might work, which can also usefully be shared.

This section provides: 1. An outline of the range of topics covered by the case studies submitted 2. Details of five specific local protocol and practice case studies, selected to give a flavour of the diverse and innovative learning provided in the case studies 3. Additional specific discussion of proposed protocols for referral to Independent Support and allocation of Independent Support Officer to individual children and families.

In addition, in order to allow organisations to fully benefit from the learning provided by the case studies most relevant to them, a large selection of case studies, representing the key 75

areas represented in the case study submissions as a whole, will shortly be made available on the Council for Disabled Children Website.

1. An outline of the range of topics reflected in the case studies

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Early Support

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Partnership working

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Up-skilling of staff

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Building good relationships with families, carers and service providers

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Supporting young people through transition periods

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Needs-led support

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Building relationships and engaging with young people

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Provision of services for young people

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Engaging professionals

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Updating protocols

Five example local protocol and practice case studies Five case studies have been presented below covering the following themes.

Case study 1) Involving children and young people with SEND in service development Case study 2) The role of Children’s Centres, and learning from the approaches they use to engage families Case study 3) Operating a volunteer workforce effectively Case study 4) Cross-border service delivery protocol arrangements Case study 5) Multi-agency working in service development between a local authority and private school provider in redeveloping post-16 learning opportunities to meet SEND reform requirements In each case study an outline has been provided of the aims and approach involved, its reported successes/strengths, and challenges identified as important when adopting the

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approach. Where the local organisation discussed how learning could be applied to the development of the Independent Support service specifically, this is also outlined.

Case study 1: Involving children and young people with SEND in service development This case study, submitted by Adviza, outlines the importance and value of supporting children and young people with Special Education Needs (SEN) and Disabilities to have a voice in the planning and delivery of services at the centre of decision making, understand and consider their options, and communicate their views, feelings and wishes.

Background Talkback delivers bespoke programmes in schools, colleges and in the community. This includes the teaching of life skills and supporting young people with SEND. They also work with a number of adult groups which focus upon supporting and developing self-advocacy, participation and involvement.

Aims and objectives Talkback specialises in self advocacy and building self confidence and self esteem to enable people with a learning disability to build and use the skills that will enhance their quality of life and to be as independent as possible.

Service and approach The delivery style adopted by Talkback is interactive, working with and alongside young people. Some elements of their approach are as follows: Starting from where the young person is; what is their understanding? How do they communicate? What are their long term outcomes? In addition, “Identify their ‘North Star’ and then work with them to identify a path to that point”

• Communicating and engaging on the young person’s terms • Being open to the young person’s personality and their ideas • Being prepared to work in a different, unconventional way to engage the young person • Really listening to what the young person says, and not judging it or comparing it 77

• Taking what the young person says seriously, trying to understand what is behind an answer

• Keeping things simple, not patronising or dismissing the young person • Using tools such as pictures to illustrate the point or the information • Having energy and enthusiasm both for the piece of work and the young person’s involvement

• Using comparisons which are relevant to the young person • Using humour • Finding common ground – for example football or music • Using the arts as a medium for communication Talkback use an imaginative and sensitive approach, preparing carefully how they plan to work with a young person or group, identifying the various stages of the process and being clear about outcomes

Lessons Finding out what young people want so that their needs can be addressed has proved difficult, yet it is a key element of the reforms. Talkback’s imaginative and varied approach has been shown to be effective in helping young people to express their views and to appreciate the views of others.

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Case study 2: The role of Children’s Centres, and learning from the approaches they use to engage families This case study, submitted by Inspira, highlights the useful practices of local Children’s Centres at engaging families by utilizing innovate methods.

Aims and objectives Children’s Centres provide information and access to services and activities for children aged up to 19 and their families. They aim to:

• Help ensure that services are integrated • Help make communities safer and stronger • Provide a tailored service to meet local needs • Encourage and work with families to help them shape the service they provide Service and approach

Telephone and face-to-face support Two Children’s Centre staff members were consulted. Each Centre offered traditional faceto-face meetings and support via telephone help lines. Generally, families with children with SEND need some initial face-to-face contact unless the nature of the advice is minor.

Where families need more intensive support and advice, and possibly a referral to another service, they will need some form of personal contact. Telephone contact and other methods of contact with families are possible, ‘once they know the face behind the phone’.

Newsletters Families will ring the Centre when they receive a promotional leaflet about a planned activity and Children’s Centre staff will provide information over the phone but then encourage parents/carers to call in to find out about other things that are available.

User-led drop-in sessions Some parents/carers feel more confident about being part of a group and feel more able to speak up in front of their peers as, for some, a meeting with a Children’s Centre Worker on their own can feel too intense. Recognising what works best is vital, according to A, “when something works well in the Children’s Centre, the best advertisement is word of mouth, especially in the small isolated communities that we work in”.

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Teatime short break sessions Teatime sessions were introduced specially to meet needs as this is a time that families identified as a ‘tipping’ point. One staff member descried that “Parents wanted to spend time with their other children who were coming in from school; they also needed the time to get the evening meal prepared. We now run a teatime short break session, which gives them this time. These sessions are also child-led, and in some areas sports-led, so the sessions are meeting the child needs as well as the parents.”

Social media Both Centres are increasingly using social media such as Facebook to communicate with families and this is proving to be very effective.

Strengths/successes

Innovative engagement methods Children’s Centres are willing to look at different ways of engaging the community. One Centre has just introduced a ‘clinic and play session’ that is proving to be very popular.

Mothers bring their babies in to the Centre to meet with the health visitor, get them weighed, and have a mother and baby/toddler play session afterwards.

One team developed an area newsletter outlining all the short breaks that were available; this was posted out to all families and it incorporated the offers from all providers. Having all of the information in one place meant that families didn’t have to contact different organisations to see what was available. This made a significant impact on bookings and take-up and the model has now been adopted County-wide as it is very economical and easy to set up.

Challenges

Perception of family Centres There remains a misconception amongst society that Children’s Centres only work with troubled families and they get confused with Children’s Services. Some families are very suspicious about the role of the Children’s Centre, why they are there, and whom they are meant to serve. A said, “normalisation takes a long time in an area where there seems to be a cultural reluctance to change”.

Mixed views of local service providers Some parents/carers have not had good experiences of working with organisations which can make them very reluctant to engage with anyone.

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Conclusion Children’s Centres have developed an approach and way of working: Use a variety of communication methods to engage with service users.

• Understand the importance of building trust and allowing families to engage in their own time.

• Tailor their offer to meet local need, recognising a one-size-fits-all approach won’t work.

• Service is user-led so families feel they have some control.

Case study 3: Operating a volunteer workforce effectively This case study, submitted by Staffordshire Parent Partnership Service (PPS), features an effective recruitment, support and supervision process for the management of a volunteer workforce.

Aims and objectives To establish a framework for a robust, volunteer support service, covering recruitment, selection, training, support and supervision of volunteer Independent Parental Supporters (IPSs) to enable Staffordshire PPS to deliver a consistent, quality, impartial, service to families with children and young people with Special Educational Needs (SEN). The framework needed to be clear, transparent and equitable, easily understood and used by volunteers and staff, and meet the requirements of the service and local authorities in terms of safeguarding.

Service and approach In 2013 a Volunteer Coordinator worked with the IPSs to carry out a full review of the four written procedures and their operation. The current documents and implementation of the procedures reflect that review.

Strengths/successes

• Families have confidence that the IPS assigned to them is impartial.

• Volunteers are clear about the role they are taking on, the training, support and supervision (including personal safety and lone-working support) they will receive and how they will be reimbursed for costs. They feel supported, valued and confident that 81

they will have the opportunity to further their knowledge if they wish to.

• Staffordshire PPS has a consistent approach with clear responsibilities and procedures in place to manage the volunteer programme effectively within existing resources and enable them, their funders, and service users to have confidence that a families and volunteers will be kept safe while a valued service is provided.

Lessons Regular review of the procedures with the volunteers and the staff team has ensured the service’s framework for working with volunteers remains appropriate and fit for purpose with any amendments and adjustments made in good time in response to feedback. Last year’s review did not identify any areas of concern and has allowed the procedures to be consolidated.

Conclusion The framework and procedures work well to support and manage an active and effective body of well-established IPSs in their provision of support to families as a result of which families with children and young people in Staffordshire can have confidence in the service Staffordshire PPS offer them.

The framework offers the benefit of being easily adapted for use with of other volunteers workforces.

Case study 4: Cross-border service delivery protocol arrangements This case study, submitted by Staffordshire PPS, outlines the successful cross border protocol arrangements between SPPS and its neighbouring PPS services in the West Midlands region to ensure families can access appropriate services where their needs are best met.

Background Since 2007 SPPS has operated an effective cross border protocol with neighbouring PPS in the West Midlands which was jointly developed and agreed through the West Midlands Parent Partnership Network’s (WMPPN) Cross Border Referrals Sub Group. The protocol applies in SPPS’s case with the neighbouring areas of Dudley, Wolverhampton, Stoke and Shropshire. The protocol sets out a simple approach to the ways in which the respective PPSs will meet the needs of families in these circumstances: 82

If the issue of concern is one related to the statutory assessment process, or the child has a statement and the issue is around provision, or is an Annual Review, the PPS in the local authority area where the family live will support the parent(s)/carer(s) and liaise with the PPS in the cross border (school) local authority area as necessary.

If the child is covered by School Action or School Action plus and the issue is a school based one, the PPS in the school’s local authority area will provide support and liaise with the home local authority PPS as necessary.

In the cases of children who have been excluded from school, families with a child with a permanent exclusion will be supported by the home PPS service and cases where a fixedterm exclusion has been received will be supported by the cross border (school) PPS. This arrangement ensures that families are always supported by the PP service with the most relevant local knowledge of the schools, support services and key partners to meet the needs of the family.

Aims and objectives The protocol makes arrangements for the opening and holding of files between the PPSs involved, and it stresses the need for direct inter-service dialogue, by phone if necessary, rather than making referrals by emails, thereby promoting good inter-agency working and referral systems.

Service and approach The protocol, developed by SPPS and others was agreed by PPSs throughout the West Midlands through the WMPPN managers group in 2007 and it has worked successfully since. The participating services keep arrangements under review formally and informally and are in frequent contact with each other. The protocol is a simple and effective statement of working arrangements which has worked successfully since 2007, and the services are now considering whether it should be updated and adapted for use with Independent Support after September 2014.

Lessons The importance of a solutions-focused approach to working together effectively across services to produce simple, practical working arrangements which:

• Meet families’ needs effectively • Can be clearly understood by service users, schools, partner agencies and other providers • Promote effective inter-agency working through clear, direct communication between PP services

• Have effective buy-in and co-operation from participating services as a result of joint 83

work and agreement to develop them

• Are consistent with the priorities and other policies and procedures of each participating service It is also easier to develop joint arrangements in the context of a cohesive regional approach than across wider boundaries, where joint strategic planning for services across boundaries may not be well developed.

Challenges Staffordshire as a first tier local authority area has boundaries in common with seven other local authority areas across three English regions (West Midlands, East Midlands and the North West). Despite the simplicity and success of the protocol which covers the whole of the West Midlands, it has not been possible to replicate this with PPSs in neighbouring local authority areas which fall in to the East Midlands and North West regions. This means Staffordshire PPS have boundaries with three local authorities across the other two regions where, from time to time, arrangements have to be negotiated family-by-family and case-by-case, making providing an effective service for families more difficult and time consuming with less certainty of successful inter-agency working.

Strengths/successes and conclusions The protocol has worked effectively for seven years between the participating services and will continue to be used. Its simplicity and the effective working relationships between services means it could easily be adapted for use across a wider area, as mentioned above, both in terms of the introduction of Education, Health and Care (ECH) plans and support through Independent Support Officer from September, and the long-term ongoing work with families. A national quality standard and protocol for cross-border working with families could be developed for use both during the provision of Independent Support to families with the transition to ECH plans and beyond as they continue to require independent personal support to meet the additional needs of their children and young people.

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Case study 5: Multi-agency working in service development between and a local authority and private school provider in redeveloping post 16 learning opportunities to meet SEND reform requirements This case study, submitted by Core Assets, describes the relationship between Horizon Care and Education Group and its local authority Special Education Needs (SEN) and Disability commissioners, who are collaborating to restructure and revise learning opportunities in line with SEND reforms in response to local need.

Background Horizon schools are Department for Education (DfE) registered day schools for young people with complex social, emotional and behavioural difficulties, and a range of associated learning difficulties, who cannot be supported in mainstream education. They believe that students with complex personal difficulties should not be disadvantaged and their schools ensure that students attending have a quality provision equal to their peers with the belief that, except in the most challenging circumstances, high levels of achievement can be obtained despite their barriers to learning.

For all their students, they offer a safe learning environment, high levels of teacher pupil ratio, typically one-to-two, with a personalised programme specifically created to meet individual need and allow young people to access and engage in education to reach their full potential.

It was jointly identified as part of regular review processes that, for some learners with complex social, emotional and behavioural difficulties, extended learning opportunities up to the age of 25 years were limited and/or required tailored, specialist support packages in order to be successful. A range of options are now being co-developed according to local need.

Horizon Education recognises the importance of all the young people achieving the right knowledge and skills that they will need to be successful citizens in their future lives. They believe that all their learners can leave them having achieved their full potential and with a desire to continue learning.

Under the new SEND reforms they were aware that they needed to extend and redevelop some elements of their provision, particularly post-16 opportunities to suit the specific needs and aspirations of their learners. Some of their local authority commissioners were also asking them to work in partnership with them and other stakeholders, to be part of the changing landscape and Local Offer.

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All their learners have complex needs and statements for SEN which will be converting to EHC plans and therefore planning provision up to the age of 25 years. Horizon felt that they worked hard to support their learners whilst they are with them and wanted to offer a commitment to continuing that support in their next steps, wherever they may be as part of their core offer.

Local authority commissioners have also asked Horizon to work with them to develop a range of support and outreach packages for learners with SEN in mainstream schools.

Aims and objectives Working in partnership with local authority commissioners, Horizon have identified the following as being the outcomes/content for the revised post-16 Offer;

• Consistent support from school staff who know the student and their support needs • Transferrable interview skills and career planning skills preparation and support • Opportunity to gain additional national qualifications such as OCN Communication skills • Transferrable and buildable communication and relationship development skills • Successful integration to further education (FE) or other provision • Transferable supported and phased travel skills • Personal support meeting for families by qualified support and guidance staff regarding student finance

• Successful completion of Year 1 FE studies, or longer if they require planning for reduced support towards independence

• Regular meetings with students by qualified support and guidance staff for study skills tuition

• Planning, liaison and personal accompaniment to professional meetings as required • Successful management of funding • Ongoing support with accommodation and independent living as required • Full family liaison and support for the duration Horizon has restructured some of their delivery so that some of the above are included as part of the standard entitlement for all learners at no additional cost. This is in line with the SEND reforms and in particular the EHC plan scope of birth to 25 years. Additional and enhanced post-16 packages can be commissioned separately by the local authority if these are the most appropriate support options for the young person’s needs.

Service and approach Horizon, in partnership with its local authority commissioners, undertakes end-of-year reviews and progression planning for all its Year 11 learners, especially those who are

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looked after. In light of the SEND reforms, Horizon wanted to do more as a group of schools to support post-16 opportunities and options for learners with the most complex social, emotional and behavioural difficulties.

Local authorities were currently also restructuring their post-16 offer for learners with SEND and wanted to work collaboratively with Horizon to develop a new offer. In some areas there were limited and insufficient options for post-16 learners with behavioural, emotional and social difficulties in particular.

Horizon and its key commissioners are working in partnership to develop an offer which is not yet finalised but is likely to offer several strands matched to learner needs

• For those who are able to progress at the end of Year 11 and 12 onto a FE course, apprenticeship or other approved course mostly independently

• For those who are able to progress as above but may need to receive some ongoing support via an ‘in-reach’ or ‘out-reach’ model

• For those best suited to continuing their studies in a specialist learning environment up to any age up to 25 years Key Horizon staff members have also been invited and have attended local authority general planning and awareness raising session around SEND reforms, ensuring that they are included and remain well-informed in all the local developments and initiatives going forward.

The offer is being co-developed between Horizon, local authorities, young people, their families, and any other relevant stakeholder with a view to being able to ensure young people and their families are able to access a range of local holistic options.

In addition, Horizon has been asked to develop a menu of support interventions that can be available to support children and young people with SEND in mainstream education.

These focus on:

• Training and development for mainstream teachers and support staff • Strategic support for whole-school support policies and processes • Holistic intervention support work with learners and their families • Provision of a Nuture Group hub within their special school • Intensive support and reintegration packages for pupils at risk of disengagement and poor outcomes

Successes Where Horizon schools offer a Sixth Form provision, this works well and it secures good outcomes for individual learners.

The collaboration between Horizon schools and its local authority partners is proving to

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be successful in identifying gaps in local provision and then developing a relevant offer.

The emerging post-16 offer in particular is still evolving but is promising to offer additional choices and opportunities for learners with complex needs.

Challenges The key challenge has been around maintaining the quality and delivery of the existing core school provision whilst extending and revising the offer. Initially this has the potential to create capacity issues for staffing and other resources.

Parents/carers and families of children currently attending the schools currently have a more limited understanding of the SEND reforms and will need to be intensively supported in order to make informed choices going forward and minimise any anxiety caused by the changes.

Conclusion It may be that in some areas schools have not yet played a full and active part in the local planning and development regarding the SEND reforms. For the majority of children and young people, schools and other educational settings are where they spend the majority of their time and where there is a huge amount of expertise and experience regarding SEND. However, where local authorities and private school providers, such as Horizon Care and Education Group, have been motivated to collaborate, this is promising to improve choice and ultimately improve outcomes for children, young people and their families.

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2. Referral and Independent Supporter allocation models Many PPSs outlined the approach they envisaged for managing referrals to Independent Support services, and some also outlined possible approaches for allocating Independent Support Officers to individual families.

A small number of PPSs outlined an Independent Support Officer allocation model, where the selection of an Independent Support Officer was made either (i) by the professional service or (ii) by the service user.

The key options presented are as follows, and are discussed in more detail below:

i Referral models:

• Self-referral • Professional referral ii Allocation of Independent Support Officer to individual families

• Allocation by the service (e.g. PSS, voluntary organisation or local authority) • Parent/carer and child/young person’s choice

i. Referral models In most cases, PPSs proposed a continuation of existing referral models as they had found they were working effectively.

Key aspects that differentiated the approaches discussed was the extent to which it was anticipated that families would self-refer versus referral by professionals, and also which agencies would be involved in managing and making decisions about referrals.

Hackney Learning Trust57 stated a preference for self-referral as they had experience of this working effectively for them in other areas. In this area, the local authority publicises the services contact details among eligible families, who can then decide to contact the service for support if they want. The self-referral approach attempts to empower families to take an active role in their journey, and to choose the type of support they wish to receive based on individual needs. However, as it relies on individuals taking active steps to make contact, there is a significant risk that parents/carers with less confidence or capacity to engage with services do not take up support that they could benefit from.

One area that presented a local authority lead model outlined an option for local authorities to be involved in making referral decisions prior to cases being passed on to IPS delivery 57 Hackney Learning Trust – workforce development options – Task 1

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agencies58. However, there was some concern that this creates a more bureaucratic and lengthy process for parents/carers, which could result in reduced take up, delayed access, or a less positive engagement experience for the family. In this scenario, it may be helpful for the local authority to be involved in following up families who decline to take up the service.

Another issue regarding referrals discussed by PPSs was the potential to ‘ration’ referrals if there are concerns about resource availability and, for example, restrict the offer of support through an Independent Support Officer to families who meet an additional set of criteria related to need or disadvantage. Whilst this could be beneficial in helping to target resources on families who need these most, this could mean reduced access to services for some families.

ii. Allocation of Independent Support Officer to individual families In many areas, allocation of specific Independent Support Officer to children and families was expected to be carried out by the Independent Support lead as it was felt that they would be best placed to tailor allocation to meet the specific needs of the family.

Among models involving multi-agency partnership arrangements, it was most commonly envisaged that allocation of Independent Support Officer would be done via consultation between organisations to identify the Officer that was the best match for the family (for example, the Seashell Trust).

Staffordshire PPS59 also outlined options for young people and parents/carers to be involved in selecting their Independent Support Officer from a shortlist provided by the Independent Support lead. It was felt that this would empower parents/carers and young people to access a worker they felt they will benefit most from. There was also the option for children and young people to choose to have a different Independent Support Officer to the one that would support their parent/carer.

It was felt that this approach also has the potential to help resolve conflicts of interest between parents/carers and children and young people, as staff could represent the best interest of each side and communicate their viewpoints if mediation was required.

The approaches proposed by Staffordshire PPS are beneficial for areas to consider given that, as outlined in section 2.1.2, many young people are keen to have a say in who their support worker is, and also to ensure that their views are listened to and promoted, distinct from their parents/carers.

58 Staffordshire – workforce development options – Model 2 59 Staffordshire – workforce development options – Model 1

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Summary Organisations identified a wide variety of useful practice and protocol examples from a range of service providers who were offering a mixture different delivery models. Learning from these examples could be applied to an offer of Independent Support going forward, dependent on the individual services circumstances, in order to achieve similar positive outcomes.

The advantages of self-referral included the potential to empower the individual to take an active role in their journey with support services; however, this does rely on individuals to come forward, which places the emphasis of engagement on them.

Referral by professional would result in the organisation only receiving relevant cases as the professional would allocate based on needs, however, the processes involved have the potential to become lengthy and bureaucratic for the family.

PPS organisations preferred to continue with their current referral model as they found this to have been effective for them previously; however, they benefit from reviewing their processes to determine any areas for improvements.

Some PPSs recommended that children and young people be able to choose their own Independent Supporter and, as mentioned in section 2.1.2, children and young people were keen to be able to have this level of choice in the process.

Organisations must consider how this model would work in practice as it may be difficult to manage e.g. some Independent Support Officer being selected more than others, and how to manage caseloads.

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2.1.5 Training recommendations & development of a local Independent Support training offer During the Evidence and Build phase of Independent Support, the Council for Disabled Council (CDC) has adapted existing CDC training materials to serve the context of the new Act and commissioned legal training to cover the requirements under the Children & Families Act Part 3.

This has led to the development of a four day training offer, which has been piloted with participants recruited by those organisations under contract in the Evidence & Build Phase of the Independent Support offer.

The four day training offer consists of two days training on ‘Ethos and Practice’, which provides participants with an understanding of the role and function of an Independent Support Officer, and the skills and cultural change necessary to implement the new act. Two further days cover the new legal framework and provide participants with the opportunity to share and apply their knowledge. For both the ‘Ethos and Practice’ and the ‘Legal Framework’ elements, one of the two days is provided as online training and one of the days as face-to-face training.

Evidence of representation on the Independent Support pilot training programme Nine face-to-face training sessions will have been delivered across Bristol, Leeds, London, and Telford and Wrekin in this phase. Seventy participants are undertaking the Ethos & Practice training and 90 participants the legal training.

Pre and post evaluation data of the pilot training will be made available by CDC after the final training session has taken place on 19 June 2014. The learning from the pilot phase will inform the development and national roll-out of training for the main programme of Independent Support.

Hence this section of the report focuses on early thinking and headlines around what participants think the Independent Support Officer training offer should look like and how training might be delivered to meet local need.

Training content Many organisations which participated highlighted the need for robust, good quality training which is comprehensive in covering a range of areas. These focused on national legislation and legal training as well as thorough understanding of the local context, including:

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•

Special Education Needs (SEN) and Disability reforms and associated legislation, conversion of SEN statements and Learning Disability Assessments (LDAs) to Education, Health and Care (EHC) plans, personal budgets, how to support 16-25 year olds

•

Knowledge of local services, including the roles of various statutory agencies, assessment, planning processes and structure of local agencies, and in-depth

knowledge of the Local Offer

•

Key interpersonal skills and ways of working including: working with families; valuing diversity; working with vulnerable adults; person-centred approaches; effective communication with a range of people; mediation; building relationships and trust; lone working; solution/outcome focused approaches; key-working approaches; advocacy; confidentiality and data protection; record keeping; confidentiality and impartiality; and safeguarding and child protection.

•

Knowledge around disability, including disability awareness and deaf awareness training.

Parents/carers identified similar areas for Independent Supporter training, as outlined in Section 2.1.3.

There was little variation in these areas between VCS&P organisations and PPSs. Additional topics identified by PPSs were: capacity training around mental health; awareness around impact of mental health; parental learning disability and social deprivation; early support; equal opportunities; youth perspective; counselling skills; and negotiation skills. Working with children and young people, particularly the 16-25 age range is a new way of working for PPSs which will require skills’ development.

Feedback from PPSs highlighted how training content requirements will be heavily influenced by the selected workforce model. For example, volunteers may require more detailed training on provision of specialist SEND support, whereas professionals operating in a supervisory capacity may require training in supervision and casework management.

The training received by supporters in the Buckinghamshire Parent Partnership60 was offered

by Adviza as a good example for Independent Support. Based on National Parent Partnership training, it includes legal training by IPSEA (currently being updated to reflect new legislation), and supplemented by training from others including ACE, regional meetings, shadowing, and individual supervision.

Consistency of content, especially around legal issues and local services, was identified as important by several organisations (including KIDS, and Gateshead and Birmingham PPS). It was suggested that engaging partner agencies in training, or joint training, cutting across all stakeholders and service providers may be most effective to communicate a clear understanding of how Independent Support will fit into existing local services, with associated clarity of what each stakeholder does, and criteria for accessing local services.

Wolverhampton PPS suggested users’ needs would be best met by bespoke training for Independent Support Officer to support parents/carers and for those supporting children and young people. Young people consulted felt this was important to ensure Independent Support have appropriate skills to support them.

60 Case Study: Buckinghamshire Parent partnership, Section 3, Adviza

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Systems to support training and support provided by Independent Supporters VCS&P organisations, in particular, outlined a number of systems and processes designed to support skill development and practice. These are outlined here.

•

Regular supervision and guidance on a case-by-case basis will be critical. Voluntary Action Leicester (VAL) suggested this could include initial ‘buddying up’ or following through a case with support

•

Sharing practice through shadowing experienced workers or developing networking opportunities with peers will enable shared practice and support

•

Coaching opportunities for incoming volunteer or other workforce (Core Assets)

•

It is also important to build in a system for reflective practice; VAL suggested this includes keeping a learning log

•

Develop a toolkit of approaches with supporting information. Core Assets suggests aiming to build a legacy of materials and resources documenting good practice, operating processes, policies, and effective pathways to support incoming Independent Support Officer

•

Ensuring adequate quality assurance processes (Core Assets)

Approaches to delivering training Contributors across the sectors offered suggestions on how training should be delivered.

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•

Flexibility is important to meet local need, using a mixture of learning methods.

One organisation (Inspira) proposes a mixture of online training, personal study and centrally located training events. Telford and Wrekin proposed a toolkit of national training, complemented by ‘localised’ training to meet the needs of those who do not have underpinning knowledge or experience. Norfolk PPS will complement training with the use of online resources such as the early support, CDC, IPSEA and Parent Partnership websites. Delivering training via online virtual formats was also identified as a potential option to enable access to staff who may not be able to afford the time or cost of travel to training, especially in joint delivery models.

•

Several organisations (including Amaze and KIDS) noted that parents/carers should be represented on training to enable knowledge sharing in both directions between stakeholders and parents/carers. Bromley Mencap suggested that young people should deliver training to up-skill them to use the most productive methods of working with children and young people.

•

Training should be frequent and regular to engage the workforce and keep them on board with new ways of working (Amaze). Training will need to be ongoing and renewed, which has funding implications post-funding (National Deaf Children’s

Society (NDCS)). Bath PPS agreed that ongoing training was necessary to be valued by parents/carers, and that this should reflect an annual audit of training needs. Norfolk PPS plan to deliver training throughout the year as necessary.

•

A few organisations also commented on recruitment strategies for training programmes. Accreditation of training or some financial reimbursement for the role may act as incentives for parents/carers to undertake training and commit to the Independent Support role. Academic links were identified as useful for recruitment by both a VSC&P organisation and a PPS. Core Assets suggested using academic links with universities and colleges so Independent Support Work becomes part of their social care, health and education teaching placements. Southwark PPS are also looking at recruiting Independent Support volunteers from local universities from appropriate disciplines.

•

Two organisations (KIDS and Supportive Parents PPS) expressed concern over timescales for implementing the programme, especially as recruitment and training are traditionally problematic over the summer period. Training will need to be in place before recruitment to avoid delay. KIDS also felt the new Code of Practice must be in place and familiar to all before any joint training takes place.

•

Most PPSs who discussed training envisaged this would be delivered in-house (rather than ‘bought in’ from outside), which would enable them to provide a tailored training offer responding to local training needs, whilst avoiding the likely higher costs of external training. For example, Staffordshire PPS proposed that the centrally based Independent Support workforce should be trained by an in-house Independent Support co-ordinator, utilising existing funding, with partner organisations responsible for training those Independent Support Officers which are based in their offices.

•

Whilst some areas, such as Staffordshire above, expected each agency to be responsible for training its own staff, among some areas with multi-agency delivery models joint training was put forward as beneficial for helping staff in different organisations to understand the others’ roles and services, and to learn how to work together. Southwark PPS for example is exploring joint recruitment and training with a neighbouring borough. Joint training was also regarded as more cost effective than each organisation delivering their own. Some organisations who did propose joint training also expected to be able to work in partnership, and benefit from existing training resources available in the others organisations.

Next steps for organisations

•

Both VCS&P organisations and PPSs outlined a range of planned developments over the coming months to prepare for an Independent Support service. Many of the PPSs provided more detail on their intentions to develop and/or deliver training in upcoming months.

•

Several VCS&P organisations (including VAL) indicated they will be reviewing and updating current training packages for staff and/or volunteers. VAL is investigating 95

collaboration across a range of agencies, both voluntary and statutory, with potential development of regional training to suit needs. Adviza indicated it has a useful training programme in place.

•

Some PPSs (including Gateshead and Cheshire West and Chester Parent Partnership Service (CWaC)) identified that existing training was not adequate, and would need to be developed further to ensure that staff were confident in delivering services to families effectively. Southwark are developing training on SEND in response to consultation with parents/carers; this will be available to staff and parents/carers.

Supportive Parents PPS are considering a range of organisational issues around training for the Independent Support Offer, including the possibility of training local people who can speak one or more community languages, accessing upcoming free training around SEND and associated working being provided shortly by local authorities, making mandatory for all staff the National Parent Partnership Network (NPPN) level 1 and 2 online legal training modules, and sourcing ACE resources to keep updated on legislative developments.

A number of PPSs revealed specific plans to deliver training in the coming months:

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•

Hackney PPS are planning additional training spread over three weeks with a one day work placement to familiarise Independent Support Officer with local provision and support

•

Norfolk PPS plan to deliver an accredited training package

•

Bath PPS plan to roll out a programme of training and awareness training for all those who work with children and young people and parents/carers, and for interested parents/carers, so all have basic skills to provide support and signposting around SEND issues

•

Tower Hamlets will build on their existing programme of volunteer IPSs, with a range of community languages. They are delivering a new volunteer programme in September with training on the new SEN code of practice and a particular focus on Independent Support. Successful applicants will shadow staff and complete IPSEA legal training

•

Southwark PPS aim to recruit and train 30 volunteers for the first year to provide support to 100 parents/carers and young people in that period. As noted, they are exploring a joint working model to deliver this programme

Summary Organisations expressed similar needs in terms of training content and that the training must be comprehensive.

The new requirements of PPSs to support young people will mean training will be required to support those in post to deliver the extended service.

Training needs to be supported with reflective practice, guidance, peer element, supervision, and local and regional supporting information.

A training offer should be ongoing, flexible and involve parents/carers and young people wherever possible.

An opportunity to deliver in-house PPS training would be welcome, while noting that this may require development to meet the needs of Independent Support, and children young people and their families.

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4 Appendices Appendix A: Overview of participating organisations Table 4.1 List of participating Voluntary, Community Sector and Private (VCS&P organisations) VCS&P organisations

Website address

Area

Action for Children

www.actionforchildren.org.uk

Camden, Hertfordshire, Shropshire and North Yorkshire

Adviza

www.adviza.org.uk

Buckinghamshire (South East)

Amaze Brighton

www.amazebrighton.org.uk

East and West Sussex and Hampshire

Bromley Mencap

www.bromleymencap.org.uk

Bromley

Contact a Family

www.cafamily.org.uk

Lewisham and Wandsworth

Core Assets Children’s Services

www.coreassets.com

West and East Midlands

Inspira

www.inspira.org.uk

Cumbria

Kids

www.kids.org.uk

Hull and Wakefield

National Deaf Children’s Society

www.ndcs.org.uk

National

Scope

www.scope.org.uk

Plymouth (South West)

The Seashell Trust

www.seashelltrust.org.uk

Manchester

The Carers’ Resource

www.carersresource.org.uk

North Yorkshire

Voluntary Action Leicester

www.valonline.org.uk

Leicester and Rutland

Source: CDC Evidence and Build Phase project team, June 2014

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Table 4.2

List of participating Parent Partnership Services (PPSs)

PPS

Website address

Area

Barnardos Services Ltd (Gateshead)

www.barnardos.org.uk

Gateshead

Bath and NE Somerset PPS

www.bathnes.gov.uk

Bath and North East Somerset

Birmingham SEN PPS

www.birmingham.gov.uk

Birmingham

CWaC PPS (Cheshire)

www.cheshirewestandchester.gov.uk

Chester West and Cheshire

Hackney Learning Trust

www.learningtrust.co.uk

Hackney

Norfolk PPS

www.norfolkparentpartnership.org.uk

Norfolk

Southwark PPS

www.southwarkparentpartnership.org.uk

Southwark

Staffordshire PPS

www.staffordshire.gov.uk

Staffordshire

Supportive Parents for Special Children (Bristol)

www.supportiveparents.org.uk

Bristol

Telford and Wrekin Council for Voluntary Service

www.telfordandwrekincvs.org.uk

Telford and Wrekin

Tower Hamlets

www.towerhamlets.gov.uk

Tower Hamlets

Wolverhampton PPS

www.wolvesparentpartnership.org.uk

Wolverhampton

Source: CDC Evidence and Build Phase project team, June 2014

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Appendix B: Evidence of consultations from each Voluntary, Community Sector and Private organisation Table 4.3 Voluntary, Community Sector and Private (VCS&P) organisations consultation metho VCS&P organisation

Consultation with Parents/Carers

Consultation with Children and Young People

Consultation with Professionals

Action for Children

• 57 completed

• 10 completed

• 14 completed

questionnaires from parents and carers

• 4 parents groups • 2 joint parent and

young people groups

questionnaires from young people

• 29 completed

questionnaires from children at a disability project

• 10 young people groups

questionnaires

• 11 meetings or interviews

• 2 provider forums/ professional group sessions

or activity sessions

• 2 joint parent and

young people groups Adviza

Amaze Brighton

• 135 completed

• 118 completed

• 5 focus groups

• 4 sessions with children

• Telephone interviews

and young people aged 12-24 years old

and issues from 16 agencies and providers

• 9 cameos from parent

• 2 young people focus

• Regional

questionnaire

carers

• 3 family case studies • 2 parent carer focus groups

• 1 focus group with

parents of young people aged 19 years plus

• Transition survey with 155 families

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questionnaires

groups

• Details of services

conference with key professionalsMaterial about school based work

Bromley Mencap

Contact a Family

• 259 completed

• 150 disabled young

• Feedback from

• 241 parents and young

disabled people attended focus groups and events

people (most aged between 11 and 25) completed questionnaires and attended focus groups

• 4 meetings with Parent

• Residential weekend for

• 4 meetings with

questionnaires

Forums

• 7 interviews with

parents and carers‘

young people aged 16-25 and follow up meetings with young people

parents and carers, young people and professionals

• Consultation with 4 Parent Carer Forums

• 125 completed

Parent Partnership Services

• 11 meetings with

professionals from a range of services (education, children’s services, SEN, etc)

• Transitions Event’ for Core Assets Children’s Services

local organisations

• 37 completed

• Consultation

questionnaires from young people aged 11 - 22

questionnaires from parents and carers

with a range of professionals: 5 Local Authority Officers, 10 Parent Partnership Services, 5 Schools and 1 Autism Service

Inspira

• 183 parents from

• 49 children and young

• 50 stakeholders

KIDS

• 10 focus groups with

• 7 focus groups with

• 10 focus groups

different families were consulted using a range of methods including interviews, surveys and focus groups

parents and carers, commissioners, managers and practitioners (73 participants overall)19 face to face interviews with parents and carers

• 348 completed

questionnaires from parents and carers

people were interviewed face to face

young people (64 participants in total)

representing 35 organisations were consulted using a range of methods including interviews, surveys and focus groups

• 8 face to face interviews with young disabled people aged 16-24

with parents and carers, commissioners, managers and practitioners (73 participants overall)

• 6 face to face interviews

• 8 interviews

with young people in receipt of keyworker services and support

with a range of professionals (27 participants overall)

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National Deaf Children’s Society (NDCS)

• 1700 responses to 3

additional questions in the annual Membership Survey

• 296 completed

questionnaires from parents and carers

• 31 completed

• 144 completed

• 18 young people

• Local consultation

questionnaires from young people participated in focus groups and group work sessions

• One to one

consultations with young people during an Audiology Clinic Scope

• 20 interviews with parents and carers

• Activity session with

young people aged 14+

• Video-making project

with young people aged 18-25 The Seashell Trust

• Contact with parents and carers at review meetings

questionnaires from professionals with 2 Local Authority areas

• Attended

conferences and Working Groups

• 1 focus group

of practitioners1 workshop of practitioners

• 7 interviews with

strategic managers

• N/A

• 16 telephone

• 10 completed surveys26

• Speaking to 5

• 42 children and young

• 35 professionals

• Attendance at family

interviews and meetings with local stakeholders

‘drop in’ projects

• 5 interviews with parents and carers

• 95 completed surveys from families The Carers’ Resource

• 102 completed parent carer surveys

• 5 support groups visited, meeting 47 parents

young people (age 13-19) with disabilities consulted across 3 sites

Parent Partnership Coordinators and other local authority representatives

• 8 telephone interviews with parents Voluntary Action Leicester

• 50 parents and carers

were consulted using a range of methods including a questionnaire, focus groups, discussions at community groups and interviews

Source: CDC Evidence and Build Phase project team, June 2014

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people were consulted using a range of methods including focus groups, school visits and discussions at community groups

and 4 schools were consulted using a range of methods including interviews, visits and feedback

Appendix C: Workforce development case studies

Case study 1: Localised structure and management of the Independent Support offer Organisation: Amaze

Introduction Each local authority has its own culture, language, working practices and procedures, structures and professional roles and are all working slightly differently. As such there was a consensus that the new Independent Support Officer role is going to need to be commissioned flexibly enough to not only allow for these local differences, but also to find a way to support and add value to them to bring about positive impact for families living there.

The model For this role to best support the introduction of the new reforms, other key professionals in the local area will need to trust and believe in what the role can bring and its functions need to be fully embedded into each local area’s assessment and planning process. It is hoped that whoever is successful in the Independent Support delivery phase will ‘coproduce’ the Independent Support Officer role to best fit each locality – as ‘one size will not fit all’. Our belief is that time invested in getting the role right for each area at the beginning will help to give it the best chance of success and therefore sustainability in the longer term.

Feedback from families clearly states the importance of being supported by a local organisation that is known and trusted and has a knowledge of what is happening on the ground and who/what teams are available/required to be involved/signposted on to.

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The diagram below sets out how a local structure could work.

Feeds into regional/national IS network

Feeds into local decision making & commisioning

Partnership working, signposting, crossreferring to:

Admin/Finance Monitoring

Local IS Co-ordinator

– Local IASS (PPS – SEN team – Schools – Health

Independent Supporter

Independent Supporter

Independent Supporter

Independent Supporter

– Social Care – Local Offer

• This option requires a local Voluntary Sector Community and Private (VSC&P) organisation to be available and willing to manage and lead this new work in each local area. In some areas this might be of interest to the existing Parent Partnership Service (PPS) but this might not always been seen as sufficiently independent and impartial by local families.

• The total number of Independent Support Officers available to each area will depend on the size of budgets available.

• As mentioned in 7a) we recommend a diverse workforce, pulled together quickly using a combination of secondments and recruitment.

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Case study 2: Partnership working - Multi-agency Consortium to Support Young People’s Choices Organisation: KIDS

Introduction KIDS propose using a multi-agency consortium model, appropriate for the requirements of the region, to provide targeted support for young disabled people which:

• Provides staff with additional skills and resources to meaningfully and objectively engage young disabled people who they already have established a relationship with

• Puts young people’s views at the centre and works with the whole family/support network to come to decisions which work for the young person and their family/support network (as appropriate)

• Acts as a mediator in situations where parents/carers/supporters and young people don’t agree The multi-agency model would enable co-training to enable professionals with different skills to share these skill-sets with colleagues. The aim would be to ensure a wellrounded workforce with the skills to engage the most hard to reach young people in all communities.

The model

• Describe the key features of the proposed workforce • What inspired this approach?

• What were the identified needs?

The proposed approach comes from consultation with over 80 young people aged 10-24 years using various methods including focus groups and one-to-one interviews.

During the information gathering stage of the process, young people were asked about their direct involvement in making decisions that affect their lives. The overwhelming majority made it clear that they had very little input into decisions regarding their education, health or social care. However when asked whether they would like to have the opportunity to have their say, most of young people agreed that this was something that they would value.

When responding to who they would like to support them in making choices, young people all agreed that they would prefer it to be someone that they knew, preferably their parents/ carers. However, when questioned about what they would want if their parents/carers had

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different ideas about what was best for them, young people expressed that they would like the opportunity to have support from someone else they trusted, like a support worker/ social worker.

In addition, consultation with parents /carers and stakeholders has revealed that they feel that there is a significant gap in the support for young disabled people (when asking parents about their experiences of professionals supporting young people to understand processes, many parents explained that professionals do not have the skills or resources that enable them to engage their children effectively).

Discussions with stakeholders have also highlighted the additional issues of young people who are multiply disadvantaged – e.g. those from Black and Minority Ethnic (BME) backgrounds, the traveller community or young offenders.

Issues identified are that many young disabled people are missing out on the support they require as they/their families will not engage with statutory sector professionals. It is felt that organisations already specifically working with those from BME groups would be best placed to support them in this process as they already have a relationship with the young person/family/support network and are trusted to have their best interests in mind as well as a thorough understanding of their individual requirements and methods of communication.

Identified needs:

• Young people need the opportunity to engage in decision-making processes in a way which is suitable for them – this will support them in their transitions to adulthood and support their independence

• Families have expressed concern about the ability of their children to make appropriate decisions – so the service would need to mediate between parents and young people as necessary Many young disabled people are still not engaged with relevant support services because there is a lack of understanding of the different needs of certain groups. Young people have stated that they want to be treated on an individual basis by professionals who understand them and have taken the time and the effort to get to know them.

Aims and objectives

• What is this approach trying to achieve?

• What are the expected long and short-term goals of this approach?

Via the proposed multi-agency consortium model, the key achievements will be:

• Up-skilling staff • A person-centred approach with young people at the heart • Negotiation between young people and their parents/carers 106

The short-term goals are:

• Facilitate a multi-agency consortium covering a range of targeted services (lead agency with a disability focus)

• Make links to young people’s groups who will be able to provide the best information regarding how to best communicate with them

• Create a greater understanding across agencies of the needs of different groups of young people and their families

• Increase inter-professional communication to increase cohesion across services and reduce duplication

• Employ an Independent Support Co-ordinator at the lead organisation • Identify employees with relevant skills in working with young people and families across organisations to take on the role of Independent Supporter Officer

• Co-train to enable professionals to share knowledge and skills The long-term goals are:

• Fully equip Professionals across a range of agencies to meet the needs of a wide range of young disabled people within their own organisation

• Through the strategic management board, identify targeted need, for example, young offenders, travellers and those with English as a second language, and the processes needed to meet this

• Professionals actively and effectively engage young disabled people to make informed choices about their future support options and are able to communicate their opinions in a way appropriate to them

• Ensure two-way communication between the strategic board and a young people’s group, who are representative of the young people being supported

Approach

• Scope and timescale • How the project will be delivered.

• Who are the key people involved at both a strategic and operational level?

• What level of staffing will be required?

• Who will they work with?

• How will this work alongside existing services provided?

The proposed project would run for 3 years to fit with the maximum length of time given to local authorities to change existing arrangements to Education Health and Care (EHC) plans. The project would work with young people from 13-25 years and their families, as 13 years is the age when young people can legally consent. Consultations with young people 107

as young as 10 years old show that they wish to be given information and the opportunity to make choices.

A co-ordinator would be employed to initially make links with relevant and appropriate partners, including voluntary and statutory organisations, charities and education, health and social care professionals – a consortium would be formed of interested and relevant parties with a focus on the support needs of young people in the EHC process. A strategic board of key members across education, health, social care and the voluntary sector would be set up to meet quarterly to ensure:

• Clear communication between the statutory and voluntary sector to reduce the risk of duplication of effort and increase understanding of the local issues

• A clear understanding of the statutory sector processes in developing EHC plans • A clear understanding of the roles of voluntary sector partners in delivering independent support to young people and their families This would be set out in a memorandum of understanding. A risk register would also be developed and regularly reviewed to ensure that the consortium model was working and on track.

The co-ordinator will be responsible for arranging the co-training across agencies which will consist of general training for all on subjects including the SEND reforms, the EHC process, disability equality and person centred planning as well as more specific training relating to the families within the local authority.

For example, if a local authority had a large traveller community (i.e. Hull), who historically refuse to engage with education or social care services but do engage with certain voluntary sector organisations specialising in work with traveller communities, it would be beneficial for the staff in that organisation to provide Independent Support to young people and their families, as they know the issues effecting those communities. Cross agency training will support the development of a multi-skilled workforce.

Independent Supporter Officers will be seconded from existing voluntary sector organisations working with young disabled people and families across a range of backgrounds. This is important, as young people have made it very clear that they want the person supporting them to be someone that they already know who is impartial and who they have a relationship with. Young people want to be supported by someone with the skills to communicate with them and who will make them and their wishes the priority.

As each organisation will have differing caseloads dependent on the numbers of young disabled people identified within the organisation, the funding awarded to each organisation will be on a case by case basis and based on the successful completion of the EHC process.

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Case study 3: Embedding Independent Support as part of existing provision Organisation: National Deaf Children’s Society (NDCS)

Introduction The National Deaf Children’s Society (NDCS) already has a national network of family officers who offer a holistic approach to family support. A second workforce option could be that Independent Support is rolled into existing capacity (and job descriptions), as one of the services offered within an organisation. Independent Support would be a ‘curriculum’ that was implemented within an existing team as part of their role.

Positives

• A more sustainable model.There will be less recruitment needs as organisations would utilise existing employees.

• Less reliance on individuals as a whole team would be skilled in Independent Support as opposed to one individual.

• Wider coverage of an area.

• Could potentially utilise more online/email resources, for example, NDCS has a helpline that responds via the telephone to enquiries from families. The Helpline employees could be trained in certain aspects of Independent Support reducing the need for more intensive one-to-one meetings. In addition, this could meet the needs of working families.

• Better access for parents/carers and young people. If Independent Support is part of an organisation’s offer and is not limited to an individual, there will be quicker response rates for support.

• Holistic approach to support.

Negatives

• It is still not entirely sustainable as beyond the life of the funding, training will have to be updated and renewed. There would be questions around who funds this.

• There is the potential that if it forms part of an existing support service, the Independent Support aspect could potentially be lost amongst the non-SEND related support a family may be receiving.

• Monitoring and recording specific Independent Support would have to be robust if taking a more holistic approach as it may not be clear exactly where the boundaries are.

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Appendix D: Young people’s perspectives – case studies

Case study 1: Building relationships and engaging with young people – young person case study Organisation: Voluntary Action Leicester (VAL)

Introduction

• Name: John, aged 10 • White British/Gypsy Traveller • Braunstone Community Primary School but moving to Millgate School • Has a current Proposed Education Health and Care (EHC) plan • John is currently at Braunstone Community Primary school two days a week. He is going through the new EHC plan process and is hopefully going to be starting at Millgate School in the next couple of weeks.

• John started to disengage in school during the 2nd year at primary school.

Background John doesn’t like being told what to do and felt that his problems really started because his work was too difficult to understand. He has said “I don’t like asking for help”, which leads to him feeling frustrated and angry. He says “I can’t sit still when I am at school and sometimes I have off days, teachers just don’t understand me or why that happens”.

John has been tested for a number of different behavioural conditions and has also worked with a psychologist. When asked about his understanding of the processes around this and whether the test had been explained, he was able to explain what the tests were and what they would help them to find out in order to help him. He said “This felt good as it was being explained in a clear way, I was also supported to go through them which helped”.

The Current EHC plan When asked about the EHC plan John was totally unaware of what it was and what it contained. He said “Mum didn’t even know what it was when it arrived, and still cannot

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understand it”. John’s Mum has not received any support from any teachers or agencies, as his dad doesn’t like anyone in the house. “I just deal with it all myself”, John said. “I haven’t seen a report - oh do ya mean the stuff that came in the post for my mum?”.

John can explain that it has been a long journey but his main aim is to be in school, “It’s been hard for a long time, I just want to be in school and enjoying it”. John shows no signs of understanding any of the support mechanisms around him or the EHC plan.

There was also no family understanding of when any meeting was due to take place, and no communication had taken place with school or other professionals.

John is aware that a lot of pressure has been put on his parents and home and this has impacted on him personally.

John shared details of his visit to Millgate School today and expressed his happiness at what he saw and he is looking forward to seeing it all again on his visit with his Mum tomorrow. John said “It’s got lots of space - there are only 6 people in a class, they seem to have more staff who are used to teaching people like me”.

“I just need people to understand how I learn best, I need to be kept busy and always have something to do. I think I will enjoy it there”.

John’s mum is very happy finally and thinks that a vital part of the whole process is the fact that she has supported John to make the decision about the best school for his needs. She is very happy that the whole thing seems to be getting better and John is looking forward positively.

Feedback around the Independent Support Officer:

• Kind • Consistent, the same person no changing • Someone who understands that I have ‘off’ days • Smart • Someone I can talk to and trust • Someone who’s had similar experiences • Someone I can get to know • Someone who will help celebrate my achievements • Someone who has rules and is strict but fun What would make things better?

• Listening to young people when they need help and understanding that they need to talk. “It makes me angry and frustrated when people tell me what to do and don’t listen”.

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Listening to young people is important - it’s how you can really help

• Understanding that all young people and families are different Conclusion Although this has been a long journey for John and his Mum, both are finally happy with what they have managed to achieve and the fact that support has led to John’s needs being met. However, from visiting families at home it is very clear that lots of additional work needs to be done around meaningful involvement and explaining of processes and documentation, etc. If the home environment was a factor, could schools have been asked to facilitate this support?

John will finally be able to start secondary school in September at a school he has chosen and he has had the chance to settle in before he returns after the summer.

“I really enjoy art and making stuff. maths is ok too, but I am looking forward to doing art again”.

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Case study 2: Building good relationships and engaging with young people – young person case study Organisation: Action for Children

Introduction R had a pretty good idea of what he wanted; other people had doubts as to whether his objectives were realisable. This case study describes how a group of professionals came together to develop a workable plan that would lead to future improved independence and make use of his new personal budget.

Background R is 13 and lives with his family in a house that has been adapted for his needs; he attends a special school, uses school transport and attends a short break activity weekly at the weekend. However R wants to be able to take part in local leisure activities closer to home and to get to know local peers. There are opportunities available for him at specialist clubs further away from home but nothing closer to home because of his additional physical and supervisory needs.

Taking the learning that had been gained from recent developments in making opportunities available in the wider community, a group of professionals got together to work with R on three fronts 1. Identifying what he would like to do 2. Working with R to come to a realistic understanding of what is feasible.

3. Helping R’s parent’s accept his drive to be in the local community, as they preferred that he remain using specialist services for safety reasons.

The work was instigated by a teaching assistant (TA) at the school, who pulled together a local youth worker and a short breaks provider to form a working group with R.

Aims and objectives To identify a sustainable local leisure opportunity for R that would enable him to get to know local peers and have a presence in his own community.

The long term goal was linked to his achievement of maximized independence and presence in the community.

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• The short term goals were about: • Re-engaging with local peers, • Building self esteem • Developing a realistic approach to his planning • Establishing a new opportunity in the locality that could be shared with others.

• Making the opportunity safe and understanding any risks involved Approach The TA brought the group together after R’s annual review and work started on establishing what it was that R wanted and what R could actually achieve. Best use was made of existing assessments at school and from the short breaks provider. R was encouraged to set targets for himself and the group set targets in line with his.

The whole process took nearly 6 months, the group had to work at R’s pace and there was much work to do locally to find and establish appropriate responses.

The strategic involvement was minimal, other than linking the initiative to R’s personal budget development. The review had agreed that R’s aspiration for a presence in his local community should be followed up, despite some scepticism that he would be able to cope away from a specialist environment.

There was a sense that if R could be secured a placement in such a way, it may open doors for other young people. Incidentally, this was one of the fears that had to be overcome locally with the eventual provider.

Challenge

• Concern that there were perfectly good opportunities in the specialist setting that were tried and tested, safe and paid for

• Parental concerns about safety • Some concerns about sustainability • Provider concerns about not using the block contract provision The opportunity opened some people’s eyes to what can be achieved away from specialist provision, by developing effective working partnerships between providers who are willing to look at meeting individual needs. The initiative was treated as a pilot opportunity to explore what could be achieved. The parents were included throughout the process as advisers and checkers. Only time will tell about the sustainability element In future the review meeting would become more engaged with the process, this was one of a number of ideas to be explored, there had been no fixed targets set and the success 114

was very much down to the drive of one individual getting together with others who wished to make a difference.

Successes

• A new way of thinking about how a disabled young man should be best provided for • Taking a look at effective risk taking with a young person rather than going for a safe and tested route of provision

• Having someone with the drive and the vision to make something happen and gaining support from outside the “disability” world

• Building on the willingness of others to take calculated risks with a young person rather than on their behalf

• A demonstration of what can be achieved.

• The opportunity for parents to see their son in a different light.

• The acquisition of another opportunity for a disabled young person.

• A demonstration of how working together with a disabled young person can bring rewards.

The young person was able to attend a local leisure activity with specialist support. He felt that he had achieved something; he enjoyed the approach and being included. His parents are still not totally convinced and are worried that this may set a precedent for less specialist provision in the future.

Conclusion The whole scenario has enabled a wider group of people to see the benefits of taking a different approach and individualising it. The young person gained from the experience, the planning sessions were seen as activity sessions by him and were also productive for the group.

R’s self-esteem did grow and he felt that he had won. The success of this small initiative may well lead to other opportunities engineered by others and for a widening circle of professionals to see new ways of managing risk.

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Case study 3: Supporting young people through transition periods – young person case study Organisation: Adviza

Introduction Joe was given person-centred support from the Specialist Transition to Employment Adviser in order to progress his search for work experience, voluntary work and eventual employment.

Joe had a late diagnosis of Asperger’s Syndrome (aged 16yrs) but went on to gain 4 GCSEs at Grade C and above and a one year Business Studies course in the 6th Form. He moved onto an FE College to study the AAT Certificate Level 2 and continued on to study the Level 3 Diploma. Although he struggled with the course at this stage, he did pass.

Joe became NEET (not in education work or training) in July 2012. At this time he lacked the self-confidence and the maturity needed to make the transition into employment. He had become very reliant on his mum and was becoming isolated, spending long periods of time in his room, playing computer games.

A home visit was arranged for the Transition to Employment Adviser to assess Joe’s needs within a familiar environment. He agreed to undertake travel training with the Adviser; initially just one journey into the town centre, but then he quickly gained enough confidence to take the 2 buses needed to attend a voluntary placement. He then went on to attend a placement in a town in the next County without difficulty. Subsequently the Adviser met with Joe whenever he wished, resulting in a trusting, respectful partnership.

The way the Adviser worked with Joe was key. She encouraged him to recognise his transferable skills, his positive body language and demeanour. This increased Joe’s self confidence.

Joe’s stature has visibly grown. His mum felt she had been too protective of Joe and had been “wrapping him in cotton wool”. She said of the adviser, “knowing you are a specialist in your role gave me confidence and I trusted you would do the things you said you would”.

Joe said, “ I was clear about your job, that made me feel different, made me feel good to know you could help me get a job…….I needed an outsider to give me a push….you talked to me like an adult, you don’t speak down to me”.

Joe is now actively looking for an Apprenticeship/Employment in a much wider geographical area and is a lot more confident in his ability to achieve his goal.

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His increased maturity and awareness of his capabilities will greatly enhance his future opportunities.

What can be learnt from the work with this person to inform the work of Independent Supporter Officers?

• Building a relationship with the parents can be almost as important as building a relationship with the young person. Young people will be more likely to have the confidence to honestly and openly express their views if they have positive family support. It will be important that, in such cases, the Independent Support Officer works with the whole family.

• Agreeing ultimate goals but developing a step by step approach which takes the pressure off the young person and is realistic and achievable is likely to work well for some young people. The Independent Support Officer could work in a similar way.

• Being clear about the purpose of the intervention and having a specific aim can help to keep the young person on task. Independent Support Officers would need to be very clear with young people about the boundaries of their role.

• It is clear that Joe was very comfortable with this approach; it was collaborative and Joe was treated as an adult.

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Appendix E: Parents/Carer perspective case studies

Case study: Building good relationships with families, carer’s and service providers Organisation: Adviza

The model - PACE Parent Partnership (PPP) PACE is a charity which provides education for children with sensory motor disorders.

Programmes are based on the principles of conductive education and are designed and delivered by a multidisciplinary team of conductors, teachers, therapists and classroom assistants. Supporting, enabling and sharing with families is an integral part of all PACE activities.

PPP is open to all parents and carers of young people who attend PACE. It meets on a regular basis to discuss a range of issues about PACE provision but is also an opportunity for parents/carers to share information about the needs of their children and the support available locally and nationally. It was established by two parents who felt that they did not have a formal means by which useful knowledge and information could be shared with others. Previously such discussions, though very useful, had been ad-hoc. Because pupils are transported to school in taxis and arrive at different times there is little opportunity for parents to meet.

Speakers regularly address the group on a range of topics depending on the wishes and interests of parents. As well as professionals, recent speakers have included a yoga teacher who explained the benefits of yoga for disabled children and a counsellor who held a workshop at which parents were able to talk in confidence about the issues they face in raising a disabled child.

Parents have indicated that they benefit enormously from the re-assurance which others can offer them. One parent commented, “This group has given me hope for the future, I don’t feel lonely any more”. They often referred to their colleagues in the group as friends.

The role of PPP is clearly differentiated from the support that PACE as an organisation offers to parents. It is easier for a group made up exclusively of parent/carers to raise issues about PACE which can be discussed collectively and reported anonymously (though parents were delighted with PACE and there was no indication that PPP had any concerns about the quality of provision).

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All 6 parents who attended the focus group indicated that they always sought support from PPP to help them make choices about their child. Two parents indicated that they sometimes contact the Bucks Parent Partnership and two parents indicated that they contacted Families and Carers Together (FACT) Bucks.

Because parents in the group have children in different age ranges but with similar needs, parents said they were able to benefit from the experience of those parents with older children.

Parents value the support and help of other parents and this relates to empathy as well as information. One parent commented, “if it hadn’t been for this group I wouldn’t have had the confidence to fight battles”, and another said, “we get 99% of the support we need from other parents”.

Most parents appeared to appreciate that not everything can be achieved and that there are limited resources, but that it would be good to know as early as possible what they could realistically expect. One parent commented that those supporting them “…… needed to be transparent and honest”.

What can we learn from parents in PACE Parent Partnership to inform the work of Independent Support Officers?

• The support that this group of parents offered to each other was very important to all of these parents. Should Independent Support Officers be parents who are going through or have been through the system and know what it’s like?

• The ability to listen and empathise appears to be a key factor in what is perceived as ‘good’ support

• Openness and honesty were seen as key qualities in the services this group of parents accessed

• Could an Independent Support Officer build a relationship with groups such as this?

Parents concerns are similar, and parents appeared confident in speaking about their child in front of other parents. Supporting whole groups could be an efficient use of the Independent Support resource

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Case study 2: Building good relationships with families, carer’s and service providers – family case study Organisation: Bromley Mencap

Introduction Judith is a single parent and has two children living at home with her, both with disabilities.

She is from a Black and Minority Ethnic (BME) background. Judith talks about what works well for her when accessing support and services for her children.

Judith’s children both have complex needs. Sinead has complex epilepsy, a severe learning disability and, after a recent serious illness, has been unable to weight bear. She also has colitis and a history of difficulties with preparing to transfer to college and is looking at various options with the support of her mother. Kieran attends Riverside, a special school, as he has complex communication difficulties and autism. Judith leads a very stressful life as she doesn’t have any support from her family as they live a few hours’ drive away.

However, they are very good at supporting her over the phone and do visit whenever they can. Sinead has been allocated short breaks but it has been difficult to find suitable support workers and, at the moment, Judith isn’t receiving any respite. The case study covers the support Judith has received around information and making choices suitable for her family situation and focuses on the work around Sinead’s transfer from school to college with the Preparing for Adulthood (PfA) Team.

Background Judith said she would like support on a regular basis for all the issues connected with raising two severely disabled children who have very varied needs. Issues over the past few years have been around transport for Kieran, welfare benefit issues, Sinead’s health and now her transfer to adult services and college.

Judith said that she would have felt more confident in dealing with professionals if she had been given the opportunity to discuss the family’s practical issues with a support worker.

She joined a therapy group for parents several years ago and, although the therapy has finished, she still meets regularly with the other parents and this gives her great emotional support. She likes to have the options for her children made available to discuss and she wants time to discuss documents with an independent worker before she signs and returns them. Judith prefers dealing with a support worker familiar with her family. This means she doesn’t have to continually repeat her story to them.

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Aims and objectives Judith feels that this approach would enable her to gain all the support she requires but also empower her to speak up and be sure of her facts. She feels that her emotional support comes from the parent group she is still connected to. Therefore a good approach would achieve all round support to ensure important decisions were made when Judith was feeling emotionally supported and with all the relevant information to hand. Continuing this two-pronged approach should enable Judith to feel empowered to make decisions and ask for support and information when she needs it.

The long term goals for Judith are to have both her children settled into adult services which meet their needs and allow her to have close involvement in their lives. Judith chose to use the existing services of a local charity (Bromley Mencap) as she could access emotional support through their therapy group and practical support from the Family Services Support Worker. She feels this practice best suits her long term goals.

Approach Judith was approached by Care Management to complete a profile “About Me” for Sinead.

This form would be read in conjunction with Sinead’s Education, Health and Care (EHC) Plan. Judith called her support worker and arranged to meet with her before and after a visit from the PfA Co-ordinator.

The visits were to take place over a period of 6 weeks with follow up phone calls and emails as necessary.

The Care Manager and PfA Co-ordinator agreed to visit together which saved time for Judith and made the process easier for her. She liked the opportunity to talk to these professionals about all aspects of Sinead’s needs and was keen to make sure that all the details were correct.

Challenge Judith said that it is difficult to deal with several professionals who aren’t always available to visit at the same time.

By having pre and post meetings with her support worker she felt that nothing vital was missed and it didn’t matter if the support worker couldn’t attend the actual professional meeting.

Better co-ordination of professionals when arranging meetings could make the process more efficient and transparent for the family.

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Successes The information given in the “About Me” assessment was more accurate and detailed and this will feed into an EHC plan at Sinead’s future college to ensure that she gets the opportunity to achieve her full potential.

Judith said that the biggest contributor to this success was the fact that she felt supported and that she was getting all the relevant information she required. Plus the opportunity to talk this over at length with an Independent Support Officer ensured that nothing was missed in this vital assessment.

The benefit of this approach for Judith is that she can take her time to deal with this important matter and it gives her confidence and helps her feel empowered to alter documents as she feels necessary.

Judith said that attending the Parent Therapy Group had enabled her to understand the emotional turmoil she often felt in respect of the care of her children. She had forged strong links with other parents and, although the group had ceased, they still met regularly and spoke on the phone offering mutual support. The sessions had given her the tools needed to deal with some aspects of her difficult situation.

Judith said, “Jane (the therapist) was wonderful, she helped us to understand. She taught us and then sent us out into the world to manage. Gill gives me the practical support I need around welfare benefits, form filling and meetings with the Council. A good combination. They have seen me through many crises and I really value their support”

Conclusion Judith feels that she is well on the way to achieving a smooth transition for Sinead to an appropriate college and that a suitable alternative to her present short breaks package may now be negotiated.

Judith now has more information about post-secondary educational services and is more empowered.

In the future, Judith will use her contacts to access information she may need or to be signposted to another supporting organisation.

Consistency and availability are essential for parents to be able to make well balanced choices when accessing services and support.

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Case study 3: Developing a bespoke package of support family case study Organisation: Inspira

Summary The case study describes a transition planning process from a parent’s perspective and provides a model for developing a bespoke package of support. The young person concerned has complex needs arising from Autism and she required an innovative approach to put in place a learning programme which could meet her needs in her local community.

The young person is presently successfully participating in a brokered provision which has been developed in collaboration with family, health, social care and education.

Introduction Our daughter (R) has complex learning difficulties and behavioural difficulties relating to Autism. A number of agencies have worked together to develop a local opportunity which allowed R to remain in the local community.

Background The long-term aim was for R to live independently with support. Our concern was that whatever was put in place for R’s transition would need to be based around an autism informed service with autism skilled staffing. A range of agencies worked together to prepare for R’s transition on leaving school including: Inspira, Adult Social Care, Adult Education, Community Nurse (Behaviour) and a community based provider. It was important to identify suitable, local provision which could accommodate R and enable her to continue in education.

R has profound Autism; sometimes her behaviour can be challenging and she finds it difficult to work alongside others. We were very keen for R to remain in the local area but there was no suitable existing provision that could meet her educational needs on leaving school. The Inspira worker who has worked with R since she was in year 9 explained to us that there was a new flexibility in funding arrangements which meant that with extra support R could continue to access to education in her local community. We were very happy about this as R would be able to access a range of services locally whilst at the same time preparing for supported independent living.

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Aims and objectives We were very keen that R was not stressed by any changes. It was important for us that things weren’t rushed; this meant a gradual introduction to a new setting and new staff to try and reduce the anxiety that our daughter would feel. We appreciated that the agencies were working together to put together a bespoke package of support that met R’s needs.

We were kept fully informed of developments and always felt that the agencies were working in R’s best interests.

Long and short-term goals of the approach/practice Our long-term goal was for R to live independently, but close enough to us so that we could maintain regular contact. We were very keen that things happened at a pace that suited R. The agencies involved gradually introduced R to a new environment and staff. We hoped that by working in this way she would become less reliant on us over time and feel less anxious about change. It would also allow support staff to get to know her and develop an understanding of her needs.

In the short-term, R would continue in learning and this meant that an individual educational programme had to be developed which could support her to access community resources, to develop life skills and tolerance in different settings and with new people.

Approach We have been involved in planning for R’s future since year 9 and because of R’s needs there have always been several agencies involved. We have always worked closely with the school and have attended all of the reviews. We have also attended planning meetings with agencies that have not taken place in the school.

The professionals who have worked with us understood that R’s needs were complex. When our daughter reached puberty her anxiety increased and challenging behaviours developed.

During this time we found the advice of a specialist Community Nurse with regard to challenging behaviour issues especially helpful. The Community Nurse was involved in the planning for R leaving school. We made our decisions based on what works well for our daughter, we were keen to minimize the stress she may experience and we wanted her to continue to benefit from educational input.

R is now in the first year of brokered provision, she is 20 years of age. The transition planning will continue to support her until she has moved on into supported accommodation.

The agencies involved in developing this special package of support include: the Community Nurse, Transition Social Worker, Inspira Adviser, Adult Education and the Day Activities Provider and the Local Authority.

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Children’s Service and Adult Social Care have made a contribution to R’s support package.

We feel that this approach would benefit any young person who requires a lot of support to access local provision and for whom independent living is a longer term goal. R would have found it very difficult to take part in group activities and any changes to her setting and routine cause her to feel anxious. The individual approach that was taken meant that R’s needs were taken into account and informed the provision that was put in place.

Challenge

What problems were encountered?

One of the main problems from our perspective was the lack of suitable venues for R to be based in. Initially, a venue was identified which was ideal but unfortunately it was withdrawn as it was required by another young person. R needs a quiet environment, she finds it difficult to share with others, and she also finds busy places and new people distracting.

Another problem was that R found it difficult moving between different venues; she finds journeys stressful, and the taxi firm that was commissioned were unable to manage the difficulties encountered and the service was withdrawn.

How did the approach overcome/deal with them?

Alternative venues continue to be problematic but R is accessing resources such as swimming pools at exceptionally quiet times which help. Efforts to find a permanent base in the local area continue. We are working with professionals and agencies to identify possible locations and activities which will be appropriate for R.

What could be done differently next time?

We understand that the way that agencies have worked together to create a specific package of support to meet R’s needs is fairly new in Cumbria. Now, thanks to some flexibility in the way that the funding works, it is possible to create something unique which specifically meets the young person’s needs.

We would have liked to have been able to see a proposal in writing, or a draft timetable in the early stages of planning as this would have helped us to understand the brokerage idea more fully.

With regard to difficulties related to transport, a crisis actually led to the solution! When the commissioned transport ended, a short term arrangement was set up. This was for the familiar support staff to collect R from home. It became apparent to everyone concerned that this was more successful as it minimized the number of people R met, and reduced journeys and waiting times in and out of centres. As R’s stress level reduced she was better able to participate in the programme. We all agreed at a review meeting that the temporary

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measure was more successful than the previous transport arrangement. R’s Social Worker was able to make a case to support this new approach financially and the Care Provider was able to flexibly use staff to continue with the transport arrangement in place.

Successes

Specific challenges to the work/project that were overcome Specific challenges have been the lack of appropriate, quiet venues that can used by R. Even the swimming sessions have to be re-planned so that at busier times such as a school holidays there is an alternative option.

There are regular review meetings to discuss how R is getting on and issues such as transport and venues have been discussed. Our view is that the all of the agencies involved were willing to work together to find solutions to any difficulties that arose. For example, R now completes home skills such as cooking and household tasks at home; the support staff travel to us; R can still work towards achieving the educational targets that have been set.

This approach was trialled at first but now it is a set day in R’s weekly timetable; I usually go out to ensure that R has no distractions and can concentrate on the activities.

When R has experienced anxiety, it has been possible for both us and the support staff to seek the advice of the Community Nurse and different approaches have been advised.

What were the biggest contributors to these successes?

There has been willingness on everyone’s part to develop a new kind of programme.

Everyone involved has been committed to its aims and have collaborated to identify solutions to problems. New funding arrangements mean that programmes can be built up from scratch to meet our daughter’s needs. R has been able to continue in learning through the link with Cumbria Adult Education.

Benefits of the approach/practice As a result of agencies working together a viable alternative to Residential further education (FE) was identified. Our daughter was central to the whole process, R will not need to go through the stress of massive upheavals in her life as the programme that is put in place to meet her needs continues to be reviewed and developed. We really hope that this approach will lead to more local resources being established that can successfully provide for young people with similar needs.

Feedback from young people and their families We honestly believe that R is the most settled and happy that she has been for a long while. We are delighted by the support we have received, especially with behavioural issues.

The care provider is really getting to know R and understand her needs which will be

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helpful when she moves on into independent living.

R is happy; this is evidenced by her willingness to participate. She is happy to leave her home and we feel that she enjoys being more in control. The programme isn’t rigid but has the flexibility to adapt to her daily needs, she is not required to attend a school setting and as a result instances of challenging behaviour are declining. We have received good feedback from the educational tutor and we know that R is engaging in the programme through photographs/drawings and work on computers.

Conclusion

What was achieved?

R is taking part in a well-structured life skills education programme. It is delivered in local community settings and in our home. We believe that it will assist R to make transition changes as a young adult.

Benefits that have already been realised R is developing the skills that she will need for independent living. She is happy and settled.

Future potential benefits Hopefully, everyone involved has learnt something from the way things have been developed for R and we genuinely hope that other young people with similar needs will benefit.

Lessons learnt A way of working has developed which may benefit others with similar needs

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Case study 4: Ability for key working supporting vulnerable families Organisation: KIDS

Introduction This referral was made to Keyworker Service by the Health Visitor. The reason for the referral was to support the family with organising appointments and referring to appropriate professionals and services, form filling and emotional support. English is the mother’s second language.

Background Jojo was born in the UK at 39 weeks by emergency caesarean. He was diagnosed with Down’s Syndrome, along with seizure activity. He also has poor expressive and receptive communication skills and displays aggressive behaviours mainly towards his mother. Jojo’s parents both originate from Ghana.

Aims and objectives Referrals had been made to Speech and Language Therapy, Physiotherapy, and for hearing and vision tests. His sleep pattern is also variable. The need for support with forms was complicated by the parents’ relationship breaking down, the mother having to leave the family home with Jojo, and the ensuing problem with legal status and right to remain in the UK. A number of agencies were required to co-operate to secure the best outcome for Jojo and his mother during a period of great vulnerability.

Approach Keyworker support for Jojo and his mother was intense and included:

• Information and referral sourcing for Service Aids to Independent Living • Initiating and completing Common Assessment Framework • Giving relevant information and location of local nurseries • Liaising and working with many professionals • Making a referral to Parent Partnership Services • Attending appointments with a parent to see the Paediatrician

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• Discussing and making a referral to Down Right Special Group/Service • Attending Children with Additional Needs Meetings • Making a referral to the Educational Psychologist • Making regular contact with Welfare Rights services • Completing a letter of support for housing • Completing a Disability Living Allowance form • Supporting and making regular contact with an agency in connection with Income Support

• Making several referrals to the Food Bank Service • Making several enquiries for re-housing the family • Assisting in settling the family into their new home • Completing Carer’s Allowance forms on behalf of Jojo’s mum Challenges Jojo’s parents’ relationship ended whilst he was still very young. This caused his mother to seek alternative accommodation for herself and Jojo. Although she found somewhere else for them to live, it was on a temporary basis. As Jojo’s mother was now considered an illegal immigrant, she had to apply for legal status and was exempt from benefits, leading to considerable financial pressures.

Successes Jojo and his Mum now live in a flat within a sheltered building and have British status and leave to remain. They are successfully in receipt of all benefits including Income Support, Child Benefit and Disability Living Allowance; she is awaiting her claim for Carers Allowance. Jojo now has a Statutory Assessment with a high banding; he will be attending full-time school at the start of the summer term.

All relevant services and professionals are now in place to support Jojo in order to reach his full potential.

Conclusion Jojo’s mum will need assistance in completing a Family Fund application and any other grants available for their needs.

The family will continue to need emotional and practical support.

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Appendix F: Good local protocols and practices directory Directory of Good Local Protocol and Practice: Case studies catalogue Case studies: Early support

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Case study

‘Knowledge is Power! The positive impact of parents sharing information and recommendations on services and support’.

Organisation

Scope

Summary

Scope highlights some of the successes and challenges highlighted by parents about being able to access information and advice about key SEN services.

Case study

‘Parent Support Advisors: The positive impact of school-based early intervention’

Organisation

Scope

Summary

This case study highlights the positive impact of Parent Support Advisors in Plymouth in changing school culture and dealing with emerging issues at an early stage. Both successes and challenges of introducing Parent Support Advisors to schools are discussed

Case study

The Early Support approach

Organisation

Bromley Mencap

Summary

This case study explores how the Early Support model has supported local authority Foster Carers to care for a very young child with complex needs and explore what support might look like this family as they consider when and EHC Assessment and Plan should be undertaken for their foster child.

Case study

Proactive school

Organisation

The Carers’ resource

Summary

Case study describing the positive experience of a young person who has Freidrich’s Ataxis, a condition that affects her balance and coordination.

A discussion of the schools extensive support mechanisms is made which made a dramatic impact on the young person’s life.

Case study

Sibling support

Organisation

The Carers’ resource

Summary

A case study describing a young girl whose brother has Autism Spectrum Disorder (ASD) and was struggling with her family situation. With the help of the Early Intervention team she was referred to a young carer project to get support.

Case studies: Partnership working Case study

Private providers and local authority commissioners working together to improve choice for post 16 learners.

Organisation

Core Assets

Summary

Case study highlighting the collaboration of Horizon Care and Education group and its Local Authority SEND commissioners to restructure and revise learning opportunities in line with SEND reforms in response to local need.

The aim of the collaboration is to ensure all learners are able to access a robust and effective range of choices matched to their needs.

Case study

Worcestershire’s commitment to parent carer participation and engagement via the work of Our Voice in particular

Organisation

Core Assets

Summary

Case study illustrating the work of Worcestershire Parent Carer Forum and its emerging development and strategy within the County and developing partnership with the Local Authority.

Case study

Walsall Council MAST: A protocol for a single point of contract and early help.

Organisation

Core Assets

Summary

A discussion of some of the changes and improvements that have taken place in Walsall Children’s Services and the introduction of a Multi- Agency Screening Team (MAST). The team acts as a front facing query and referral service for children’s services made up of professionals designed to promote multi-agency working.

Case study

Good example of Multi- agency Working

Organisation

Bromley Mencap

Summary

A case study showing a good example of support in school, and the involvement of other agencies such as voluntary organisations to support a family complete an EHC plan.

Case study

Training Nurse

Organisation

Action for Children

Summary

This case study relates to a young person whose life has been governed largely by the way in which her health based needs have been met in the past. Discussions of new protocols are made which have enabled a wider outreach support and provision of short breaks initiative with the local authority for young people.

Case study

Audiology: North West (Bury and Rochdale)

Organisation

National Deaf Children’s Society

131

132

Summary

A case study describing the way that a local audiology service works with families of hearing impaired children in a multi disciplinary way.

Case study

Accessing support

Organisation

Voluntary Action Leicester

Summary

A case study describing the success of multi-agency working between the SENCO, SEND pathfinder and Speech and Language Therapist (SALT) in enabling a family to access support.

Case study

Case study 3

Organisation

Voluntary Action Leicester

Summary

A case study discussing multi-agency working in order to support family and child with Autism Spectrum Disorder (ASD).

Case study

Family Voice

Organisation

Norfolk Parent Partnership

Summary

Case study outlining Norfolk Parent Carer Forum’s annual conference inviting guest speakers and people whose parents often find it hard to reach, particularly within the Local Authority with the aim of creating a shared understanding for parents and professionals

Case study

Partnership working between a Parent Partnership Service, local authority, Parent Carer Forum and local mainstream primary schools.

Organisation

Supportive Parents for special children (Bristol)

Summary

A case study demonstrating partnership working in order to improve communication between schools and parents with SEN.

Case study

Partnership working between a Parent Partnership Service, a family, a young person and the local authority.

Organisation

Supportive Parents for special children (Bristol)

Summary

A case study demonstrating partnership working between a local authority, PPS, a family and young person illustrating interactive working and willingness to take on board young person’s needs and wishes.

Case studies: Upskilling of staff Case study

A protocol for regional training, development and networking

Organisation

Core Assets

Summary

A case study discussing the East Midlands Parent Partnership Group and its adoption of practical peer to peer support and continuous professional development and networking. This case study discusses some of the practical implications of upskilling staff, including some of the challenges and successes of this.

Case study

Draft job description

Organisation

Wolverhampton Parent Partnership

Summary

As part of a consultation process for Independent Support, a draft Job Description has been produced which identifies the roles and responsibilities of an Independent Supporter for Wolverhampton.

Case studies: Building good relationships with families, carers and service providers Case study

Developing the Staffordshire protocols and pathways for SEND

Organisation

Core Assets

Summary

A case study illustrating Staffordshire County Councils consultation and development work around SEND with parent/carers, children, young people and education, healthcare & social care providers in order to shape the services they offer.

Case study

Buckingham Parent Partnership

Organisation

Adviza

Summary

Case study discussing the set up of a Parent Partnership to provide impartial help and support on a wide range of issues. The aim of the service is to provide information, advice and support to empower parents to play an active role in their child’s education by ensuring they know their rights and have access to support making choices

Case study

Chiltern Gate Primary Special School

Organisation

Adviza

133

134

Summary

A case study focusing on Chiltern Gate’s provision of special education for pupils with communication and interaction difficulties. The school provides particular emphasis on providing support for families and trust, whilst encouraging communication between the school, families and other relevant agencies.

Case study

Case study from Bury, Rochdale and Oldham Children’s Hearing Services Working Group (CHSWG)

Organisation

National Deaf Children’s Society

Summary

This case study briefly outlines the findings from an annual survey conducted by CHSWG in order to gain feedback from parents and families who they wish to engage better with their needs

Case study

Liverpool Parent Partnership Service

Organisation

National Deaf Children’s Society

Summary

Case study from Liverpool PPS discussing the successes and challenges facing the parent partnership services in Liverpool. The aim of the PPS is to provide information and support to parents and carers.

Case study

What to do when a parent and child disagree over educational issues?

Organisation

The Carers’ resource

Summary

A case study describing how a PPS negotiated and managed a situation of conflict within a family dynamic.

Case study

Case study 2

Organisation

Voluntary Action Leicester

Summary

Case study describing how a family of Somalian origin have experienced accessing the PPS services at the Braunstone Children’s Centre for a child with autism. The experience of using an interpreter is discussed in order to support family and child with English as a second language.

Case study

Children’s Resource Centre

Organisation

The Carers’ resource

Summary

Case study describing the work of the Children’s Resource Centre (DRC) in providing expert support and information to the families of children with additional needs.

Case study

Children’s Centres in Cumbria

Organisation

Inspira

Summary

Case study highlighting the work of Children’s Centres in Cumbria responding to the local needs of communities and providing support and information for parents and prospective parents on local services for themselves and their children.

Case study

Cumbria Parent Partnership Service (CPPS)

Organisation

Inspira

Summary

Case study highlighting the work of the Cumbria Parent Partnership Service which provides Independent Support, impartial information and confidential advice to parents with special educational needs.

Case study

Area worker project with Shrine

Organisation

Norfolk Parent Partnership

Summary

Case study demonstrating the work of a pilot project carried out in great Yarmouth which was identified as an area in need of parental support, as the PPS had no active volunteers supporting in the area. The aim of the project was to support and encourage parents to support their child’s education

Case study

Support groups- STAA and STAA-LITE

Organisation

Telford and Wrekin Council for Voluntary Service

Summary

A case study of two support groups in Telford and Wrekin which help parents cope better and feel less isolated and in need of emotional comfort or moral support.

Case study

Referral line and Advice Sessions

Organisation

Telford and Wrekin Council for Voluntary Service

Summary

Case study illustrating the work of a local referral line run by the PPS for parents who need information, advice and support around their child’s special educational needs.

Case study

Identifying the barriers to accessing IAS and what groups would benefit most from the provision of IPS

Organisation

Southwark Parent Partnership Service

Summary

Case study focuses on local examples to how to reach hard to reach families, targeting families that need adjustments, what factors make IAS difficult to access and how they can adjust their services to remove barriers and promote equal access.

Case study

Delivery of Information Advice and Support Service (IAS Service) including Volunteers and Independent Support Service (ISS)

Organisation

CWaC Parent Partnership Service (Cheshire)

Summary

A case study considering how an IAS Service could develop or provide volunteers to become Independent Supporter Officers and how working with the separate ISS delivery of information, advice and support will be enhanced for families.

Case study

Gateshead Parent Partnership Service

Organisation

Barnados Services Ltd (Gateshead)

135

Summary

A description of the functioning of Gateshead parent Partnership Service, its challenges and successes and engagement with parents and guardian of children with SEN

Case studies: Supporting young people through transition periods Case study

Preparing for adulthood

Organisation

Bromley Mencap

Summary

This case study explores how the role of a Preparing for Adulthood Cocoordinator works to improve and to co-ordinate services for disabled young people in transition to adult life and explores how to help individuals achieve their full potential in life through learning, living and working in their communities.

Case study

A young person’s efforts to continue in education beyond 16

Organisation

Kids

Summary

A case study describing how relocating across boundaries impacted on a young person’s access to education and services and the importance of an Independent Supporter during transition periods.

Case studies: Needs led support

136

Case study

Enabling a pupil with ADS and High Anxiety to Continue Education

Organisation

Bromley Mencap

Summary

A case study showing a model of working adopted by a local PPS and Independent Parental Supporters (IPS). Both the challenges and successes of the process are discussed in relation to both the parent and the child.

Case study

A young person’s desire to both support his family and achieve personal independence.

Organisation

Kids

Summary

A case study describing the work of a keyworker to support a young person to balance personal responsibility and become part of the wider community.

Case studies: Building relationships and engaging with young people Case study

Talkback

Organisation

Adviza

Summary

A discussion of Talkback, a charity based in Buckinghamshire which specialises in self advocacy and building self confidence and self esteem to enable young people with learning disabilities to build and use skills to enhance their quality of life and independence. This case study highlights some of the benefits surrounding engaging young people in discussion.

Case study

Speech and Language Therapy Network: Merseyside and Cheshire East

Organisation

National Deaf Children’s Society

Summary

This case study gives a brief overview of a patient led model for young people.

Case study

A young person’s move toward personal independence

Organisation

Kids

Summary

A case study describing the role of key workers in supporting a young person with emotional support requirements wants to make positive changes.

Case study

A Young person’s journey to move out of the family home

Organisation

Kids

Summary

A case study describing the work of the Keyworker service to help a young person live independently.

Case study

A young person’s struggle to retain services beyond 16

Organisation

Kids

Summary

A case study describing the work of the PPS in supporting a young person to get a Special Educational Needs Assessment and attend college.

Case study

Consultation with children and young people

Organisation

Tower Hamlets

Summary

A summary of Tower Hamlets consultation with young people surrounding the SEN reforms including discussion of why it is important.

Case study

Partnership working between a Parent Partnership Service, Parent Carer Forum and local special school.

Organisation

Supportive Parents for special children (Bristol)

137

Summary

Case Study showing partnership working between a local authority area, Supportive Parents and the local Parent Carer Forum (PCF) who ran an event, to introduce the SEND reforms to a range of parents. Topics covered included an overview of the SEND reforms, EHC Plans and the Local Offer.

Case study

The young people’s forum: Knowledge of the EHC plan

Organisation

Barnados Services Ltd (Gateshead)

Summary

A group of children with varying disabilities were interviewed to find out what knowledge, if any, they had about the new EHC plan.

Case studies: Provision of services for young people

138

Case study

Specialist Youth Club provision

Organisation

The Carers’ resource

Summary

A case study describing a young person’s positive experience of accessing a specialist youth club through a local charity in aiding development of social skills and independence.

Case study

Quality inclusion at University and Flying High! (Written by a young person)

Organisation

The Carers’ resource

Summary

A case study illustrating a young person’s positive perspective of accessing clubs and activities such as the gym and Barnados Flying High group for people with disabilities.

Case study

People First

Organisation

Inspira

Summary

This case study highlights the innovative work being carried out by People First, an organisation that provides a range of services and advocacy options for young people and adults with learning difficulties across Cumbria.

Case studies: Engaging professionals Case study

Case study 1: Interview with professionals offering independent information, advice and support

Organisation

Amaze Brighton

Summary

Professionals were interviewed about their engagement with SEND reforms, information about their service, ideas for how Independent Support could be delivered and whether they had any training needs.

Case study

Case study 2: Interview with professionals offering independent information, advice and support

Organisation

Amaze Brighton

Summary

Professionals were interviewed about their engagement with SEND reforms, information about their service, ideas for how Independent Support could be delivered and whether they had any training needs.

Case study

Interview with Local Authority representative from Brighton and Hove City Council

Organisation

Amaze Brighton

Summary

A Local Authority representative is interviewed on engagement with SEND reforms, information about their services, ideas for how independent support could be delivered and whether they had any training needs.

139

Updating protocols:

140

Case study

Single Assessment process

Organisation

Wolverhampton Parent Partnership

Summary

As part of a pilot of the Single Assessment and the EHC plan process in Wolverhampton, a single assessment process has been developed.

Case study

Effective Recruitment, support and supervision of IPS volunteers: transferable for use with Independent Support Officers

Organisation

Staffordshire Parent Partnership

Summary

This case study covers Staffordshire Parent Partnership Service’s successful development and management of their volunteer programme to provide to families using clear, consistent policies and procedures.

Case study

Developing protocol for provision of Independent Support

Organisation

Tower Hamlets

Summary

A case study describing how Tower Hamlets is meeting the needs of its diverse community to ensure all parents/carers are able to access Independent Support. A protocol has been developed in partnership with stakeholders including parents/carers and young people.

Appendix G: List of acronyms Table 4.4

List of acronyms

Acronym

Definition

PPS

Parent Partnership Service

VSC&P organisation/ organisations

Voluntary Sector, Community and Private Organisations

BME

Black and Minority Ethnic

GRT

Gypsies, Roma and Travellers

LA

Local Authority

EAL

English as an Additional Language

EHC plan

Education, Health and Care plan

CDC

The Council for Disabled Children

IPS volunteers

Independent Parental Support volunteers

SEN

Special Educational Needs

SEND

Special Educational Needs and Disabilities

SENCO

Special Educational Needs Coordinator

LDA

Learning Disability Assessment

IPS

Independent Parental Supporter

NCB

The National Children’s Bureau

IAS

information Advice and Support Service

NDCS

National Deaf Children’s Society

VAL

Voluntary Action Leicester

DLA

Disability Living Allowance

IS

Independent Support

EY

Early years

CYP

Children and Young People

BESD

Behavioural Emotional and Social Difficulties

TA

Teaching Assistant

GCSE

General Certificate of Secondary education

CPPS

Cumbria Parent Partnership Service

WMPPN

West Midlands Parent Partnership Network

141

DfE

Department for Education

OCN

Open College Network

FE

Further Education Source: CDC Evidence and Build Phase project team, June 2014

142

The Council for Disabled Children (CDC) is the umbrella body for the disabled children’s sector in England, with links to the other UK nations. CDC works to influence national policy that impacts upon disabled children and children with Special Educational Needs (SEN) and their families. The CDC Council is made up of a variety of professional, voluntary and statutory organisations, including disabled young people and parent representatives. CDC’s broad based membership and extensive networks of contacts provides a unique overview of current issues. It also enables us to promote collaborative and partnership working among organisations.

CDC hosts the following networks and projects; l National Parent Partnership Network l Special Educational Consortium l Transition Information Network l Making Ourselves Heard l Preparing for Adulthood l Independent Support l Early Support

CDC is also part of the consortium that delivers the Every Disabled Child Matters campaign.

Council for Disabled Children is hosted by the National Children’s Bureau.

NCB is a registered charity No. 258825. Registered in England and and Wales No. 952717