SEND PATHFINDER: SOUTH EAST 7 CASE STUDY Pathfinder Name: Local Authorities and health authorities involved: South

East 7 (SE7) Brighton and Hove City Council East Sussex County Council Hampshire County Council Kent County Council Medway County Council Surrey County Council West Sussex County Council NHS Kent and Medway NHS Hampshire NHS Sussex NHS Surrey SE7: Overarching agreements and common frameworks A single assessment process and Education, Health and Care Plan; Giving parents greater control, pg 10, para 17-19; Preparing for Adulthood, Chapter 4

Pathfinder Activity: Next Steps References:

Context The South East 7 (SE7) Pathfinder comprises Local Authorities with their health and Voluntary and Community Sector (VCS) partners in the following areas Brighton & Hove, East Sussex, Hampshire, Kent, Medway, Surrey, and West Sussex. There are well over 1 million children and young people in this Pathfinder, with over 24,000 of these having a statement of SEN. The partnership has developed overarching regional frameworks and each area is working within these but testing different approaches and with different groups of children and young people. The Pathfinder has spent significant time from the start on agreeing regional principles and language that will help embed cultural change for the benefit of young people and their families. Although the detail of approaches is different locally, this overarching ethos will help with consistency and portability across the region. The partnership governance of SE7 is shown in the diagram in Appendix 1. Pathfinder Activity There are a wide range of different activities and work streams within the different areas of SE7. However, this case study focuses on the overarching agreements and common frameworks that have been developed as part of the Pathfinder activity, with a few specific examples of emerging good practice provided.

Parent carer participation and the participation of children and young people Parent carer involvement and engagement are at the heart of the SE7 Pathfinder activity. The key success factor has been the strong SE7 commitment to parents and professionals working on the Pathfinder on equal terms. Another key feature of the SE7 approach which has led to positive outcomes is that the SE7 Parent Carer Forums meet regionally on a regular basis, which has enabled them to share their learning and develop their role across the region, as well as in their own local areas. Parent carers are represented on the Regional Steering Group and on each of the seven Local Change Boards. SE7 aims to showcase best practice in engaging parent carers by having a transparent and fair regional Pathfinder participation statement, which supports, values and remunerates their contribution to the Pathfinder. This statement is provided in Appendix 2 and the SE7 SEND Pathfinder Regional Framework for Parent Carer Participation is provided in Appendix 3. All SE7 frameworks and publications have been co-produced by parents and professionals. All Pathfinder workshops and development activity involves parents on an equal basis to professionals. Engaging with children and young people is also pivotal to SE7s approach. The child is at the centre of the process, which takes full account of their views and wishes. As an example, East Sussex has commissioned a group of young inspectors up to the age of 25 with special educational needs and disability, to produce a DVD to portray their life experiences and test the attitudes of their peers who do not have a special educational needs or disability. The region has commissioned a VCS organisation to develop a regional children and young peoples participation approach to inform the work of the Pathfinder. Assessment and planning Although there are differences in approach and process, SE7 has agreed a set of overarching principles, a common language and a common framework for their assessment and planning. The common framework is provided in Appendix 4 and key steps are summarised below: Entry The family/practitioner who identifies that the child or young person has additional needs and may benefit from a single plan will inform a single contact who will arrange for key working contact. Listen and understand The key working practitioner will work with the family to collate all the current assessment information and identify any additional assessment information that may be needed. Agree and allocate - The parent carers and key working practitioner (along with other relevant practitioners) will agree the strengths, weaknesses and needs of the child or young person. Together they will agree on the desired individual outcomes for the child and agree a priority for these. Plan - The parent carers, key working practitioner and relevant practitioners develop a plan for the support that will be needed for the child or young person and their family to achieve the identified outcomes. The plan will set out accountabilities and time-scales.

 Review and Learn - The parent carers, key working practitioner and relevant practitioners will agree how often the plan should be reviewed. It will be reviewed when there are any significant changes to the child or young persons or their familys situation. At all times, parent carers and VCS groups have been involved and all plans are parent carer/child/young person owned and personalised. With regards to mediation, SE7s approach is to embed family resilience into the process, so that the family is able to build on their own knowledge, skills and experience. Engagement with families will be a constant theme running throughout all dialogue and as such mediation is not seen as a specific, separate stage. Personal budgets A series of regional workshops have been held facilitated by In Control1 to agree an SE7 framework for Choice and Control. This framework treats personal budgets as just one part of a whole approach to support, with the focus being on making the best use of the child and familys real wealth and using outcomes as a basis for making the budget allocation and in developing the support plan. The level of progress and detail in the personal budget offer differs at the local level. The lead authority, West Sussex, is the most advanced in this area and is conducting a pilot of personal budgets in children's social care. 26 families are going or have gone through the process of assessment and support planning, with 18 'live' budgets in place, and parents are already beginning to report improved outcomes for their children and families. East Sussex also has 12 families who are piloting personal budgets in social care. All SE7 authorities are working on offering educational personal budgets and are focusing on home to school transport in the first instance. Most SE7 areas are exploring piloting health personal budgets. The local offer A working group of parent carers and parent partnership services across SE7 is consulting with parent carers and practitioners to produce regional principles for its local offer framework. A draft of the local offer principles is provided in Appendix 5. Banded funding A draft framework for banded funding is being produced by a range of Pathfinders in SE7, including in Hampshire. The long-term aim of the group is to build a framework which encompasses health and care as well as education-funded provision, although for practical purposes it may be necessary to focus for now principally on education and extend only into those areas of health and care which presently cause significant cross-boundary issues e.g. various therapy-related services. Short breaks Hampshire County Council want to enable children and young people with
1

In Control is a national charity focusing on enabling those who need additional support to exercise their rights, responsibilities and freedoms to control that support

disabilities and additional needs to join in with safe, entertaining and interesting activities, whilst giving their parents or full-time carers an opportunity to have a short break from caring. The County Council has worked very closely with parent carers and activity providers to ensure that the range of short breaks on offer meet the specific needs of the disabled children and young people in the area. The Hampshire Parent/Carer Network (HPCN) helps to ensure that the families and carers of children and young people with disabilities and additional needs can participate fully in the development of services within Hampshire. They have recently worked with Hampshire on the review of their Short Break Statement. Supporting young people at key transition ages East Sussex is working with Preparing for Adulthood2 to support young people at key transition ages. The East Sussex Preparing for Adulthood element of the Pathfinder has been working with 21 young people aged 14 to 25 and their families. Of these, four are young people aged 20-21 with very complex physical disabilities. These four young people recently expressed a desire to investigate the possibility of living together in the community. Their families, inspired by the SEND Green Paper, have joined forces and produced a proposal based on the young people's aspirations and the families own ideas, and they are now working with local agencies to put their proposal into practice. A summary of this Pathfinder project is provided in Appendix 6 and the families proposal itself is in Appendix 7. More detail on all of SE7s activities, including information about each individual area, can be found at www.se7Pathfinder.co.uk and www.sendPathfinder.co.uk/Pathfinder/ Overcoming Barriers There are always challenges in working together across boundaries and agencies. However, SE7 started with an agreement on principles of working and approaches to service change. This has made a difference to the ability of all of the different areas to work within a common framework. The complexity relating to the implementation of the new school funding proposals has been identified as an area for further joint investigation and understanding. Early Outcomes A great deal of work has been done to establish principles of working, to set up relevant and effective frameworks for systems, organisation and practice and to ensure, above all, the engagement of parent carers. Most of the energies have been focused at a local level on determining the single assessment process and recruiting families. Examples of various activities can be found throughout this case study. In addition, in East Sussex, a consultant has been recruited to work with schools to develop their local offers
2

For more information about Preparing for Adulthood see www.preparingforadulthood.org.uk

and a stakeholder conference is to be held in October. In Surrey, several schools have also been approached to be part of the process for compiling and testing the Surrey local offer during the Pathfinder period. This joint approach should ensure that families in all SE7 authorities have equal opportunities to benefit from good practice approaches to the implementation of statutory reforms, despite potential local differences. Sustainability SE7s ethos is to embed sustainable approaches throughout its work. Although the detail of approaches differs locally, this overarching ethos will help with consistency and portability across the region. The ethos is supported by the regional approach for key working and the role of personal budgets in helping to achieve personal choice and control. Early Support key working training and training sessions with In Control on personal budgets underpins this. It is too early to make a genuine assessment of the value for money of proposed pathways to achieving an agreed Education, Health and Care Plan. Across the 7 local areas there is a lack of detail for timings and the steps involved in the assessment pathway. However, it has identified that significant key working training time and cost is being catered for and that the sustainability of this element will need to be measured during the Pathfinder.

Appendix 1: Partnership governance of SE7

Appendix 2: SE7 SEND Pathfinder Regional Parent Carer Participation Statement Attached

Appendix 3: SE7 SEND Pathfinder Regional Framework for Parent Carer Participation Attached

Appendix 4: SE7 shared Framework for Assessment and Planning Attached

Appendix 5: SE7 principles for the local offer3

Co-produced by parent carers, young people and professionals It is central to the work of the SE7 Pathfinder that everything we do is through partnership and our regional local offer framework and each SE7 Local Offer will be developed jointly by parent carers, young people and professionals. Empowering for parent carers, young people & professionals Our Local Offers should empower parent carers, young people and professionals by setting out clearly what can be expected locally, how to access services and where to find further information. This knowledge will enable parent carers and young people to know what to expect and to be able
3

Note: This is still in draft and is subject to change. It will be taken to the SE7 steering group in the Autumn.

to hold services to account. This knowledge will support professionals understanding of what is available and enable them to advise parent carers and young people accurately. Accessible Parent carers should be able to find our Local Offers easily and understand the content. The design will be flexible to enable access by the widest group of parent carers and young people possible. For example this could include pictures, podcasts and flowcharts. Clear and jargon free language will be used. It will be widely available in the public domain and provide information on where to find extra support. Holistic Our Local Offers will cover ages 0-25 and contain information about services from Education (including early years settings, mainstream and special schools and colleges), Health, Social Care, leisure, employment and housing, in both the statutory and voluntary sectors. Starting with what is widely available Our Local Offers will provide clear information about what is openly available without the need for particular specialist assessments in order to access it. Transparency Our Local Offers will set out the path from initial query to outcome and publish and explain eligibility criteria. They will show the routes to access services and support including timescales and responsibilities. There will be an honest explanation of how decisions are made and by whom. Options will be set out with clear pathways for action and directions about what to do and where to go if things go wrong. Sustainable and sustained Our Local Offers will be manageable in terms of quantity and level of detail. There will be a clear system for entering and updated information. They will avoid duplication and use effective links. There will be clear arrangements for feedback from users and for review by the co-producers parent carers, young people and professionals. Factual Our Local Offers will be clear, factual and honest about current practice and provision. They will help parent carers, young people and professionals know what they can reasonably expect. Our Local Offers will recognise gaps, limitations and service changes and point towards possible alternatives. They will include information about how parent carers, young people and professionals can be involved in and influence policy and practice.

What has the initial feedback from parent carers and professionals told us? Feedback on the Principles was very positive some particular comments on how we should develop our Local Offers across SE7 are listed below: General: Lots of people did not like the term Local Offer as they did not think it is clear. Need to be clear on the purpose of the Local Offer and who it is aimed at Concern about the term practitioners now changed to professionals The Local Offer should set out how parents can participate and what are their rights in terms of participating in decisions about their child Parent Carers want explanations of terms eg P Scales/NC Levels The Local Offer should include information about training available to parents perhaps an upcoming events calendar May be good to capture parents recommendations (currently this is word of mouth) Co-produced principle: The Local Offer should describe our commitment to ways of working together Accessible principle: Information must be flexible and proportionate so not to overload Use icons and pictures to help clarity also be aware of the visually impaired Not everyone has a computer and internet access Need access points across the community Should be able to filter the information including by postcode Use of key words is very important so the Local Offer is fully searchable on the web The Local Offer also needs people to help parents navigate and understand the information Having the information in tiers will be helpful There should be a link to a glossary of terms and jargon buster Factual principle: The Local Offer must not create false expectations Holistic principle: Parents Carers want clear information about schools The Local Offer should include vocational courses Should include after school clubs Information about support groups for parents should be included Groups to be aware of Home Educators and Early Years who do not have access to a school Starts with the widely available principle: The Local Offer must not just focus on children and young people with a single plan but include lower levels of need

Transparency principle: Include a what to do if you are not eligible section Funding should be clearly signposted and the thresholds for accessing this Accountability is very important Must include a what to do if things go wrong section Clear language stating right and responsibilities for being a parent carer Include the right for parents to refuse services offered Sustained and Sustainable principle: Must include a way of giving feedback on the Local Offer itself and keep it under review

Essential Features of the SE7 Local Offers Consistent format across the region Has both SE7 and local branding Access points available across the community Supported by trained people who can guide parent carers through it Comprehensive but not unwieldy Sets out its purpose and who it is aimed at Searchable on the internet Includes a feedback facility on the local offer itself for users Includes both local area wide standards and information and also service specific information Desirable Features of the SE7 Local Offers Searches can be filtered by area, age, need etc Includes a feedback facility on individual services for users

Appendix 6: East Sussex Preparing for Adulthood Programme The East Sussex Preparing for Adulthood element of the Pathfinder is working with 21 young people aged 14 to 25 and their families. Of these, four are young people aged 20-21 with very complex physical disabilities. The four young people have attended an independent residential special school for most of their school careers. The school has now established a residential unit for young people over the age of 19, however there is no formal education provision within the unit. The provision was established because of a lack of other opportunities for the young people. The four young people recently expressed a desire to investigate the possibility of living together in the community. Their families have joined forces and produced a proposal based on the young people's aspirations and the families' ideas. There were many perceived barriers identified by local agencies, including: Silo working by agencies Lack of clarity around the totality of their budgets Lack of processes in place to enable choice and control Lack of aspirations by people supporting the young people and a fear of the status quo being disrupted. Lack of trust Fear of disappointing the young people Starting something that wont be finished However, the document prepared by the families setting out their aspirations was agreed and adopted by all partners in July 2012. The Pathfinder requested support from Preparing for Adulthood, to scope next steps, timescales and support, and a meeting with parents and partners will take place in September 2012 to begin the process of detailed planning for implementation. The single assessment process and EHC planning is being used to help the young people and their families to plan the move from the residential school to independent living in the community, taking account of the young people's aspirations and their complex health and housing needs. The young people are also keen to explore future education and employment. The provider and the local authority have agreed to continue this work beyond the life of the pathfinder as it is a longer term project. Funding will be sought from the young people's continuing health care budgets as well as their social care budgets and other funding streams such as housing and council tax benefits, education and employment funding to sustain and meet the costs of making this happen.

It is too early to scope costs and value for money, however if it is successful it will provide far better outcomes for the young people and therefore provide value for money. It will also provide a blueprint for future ways of working and supporting young people and their families.

Appendix 7: Families proposal for young people Exploring A Different Life Option for a Group of Young Adults Leaving Special Residential Provision in East Sussex at or before Age 25 Proposal from four families on behalf of our sons and daughters. July 2012 Introduction We, as a group of four families, have produced this document to outline our thoughts and aspirations for the type of provision that we seek for our children (each of who is described as Low Incidence Needs by the establishment) when they make the final leap into an adult care environment to meet their ongoing complex needs. We have each been active in involving our children in general concepts of what may be available to them in the future but have been careful not to be specific so as not to raise expectations unnecessarily as experience tells us that speculation about major changes in their lives has a destabilising effect on them and that any change has to be firstly certain and secondly carefully and compassionately introduced to them. Collectively we acknowledge that our joint thoughts will not constitute a full solution and that our group will need expert input from a variety of sources for us to establish whether a bespoke future living solution of such a complex nature is feasible for our young people. Background They are a group of young adults aged 20 & 21 with profound and complex physical disabilities who have attended a residential special school in East Sussex from ages ranging from 3 to 10 years old. Each of them has thrived in the School's unique environment where their educational, emotional, social, medical and care needs have been admirably met. At age 19, the young adults became resident in the school's recently opened transitional service for 19 to 25 year olds which is where they are currently living either on a permanent or on a home either every or every other weekend basis. The Transitional Service, whilst it doesn't include a formal educational element, was created and designed to equip disabled young adults with the life skills that will be needed for their future lives; recognising the fact that for those with extremely complex needs, a straight move from a vibrant and nurturing school environment to an external adult placement in most cases proves to be extremely challenging and in some intolerable. The service

provides continuity of care with access to multi-disciplinary on site medical services whilst it builds on independence, life and social skills to better prepare them for full adulthood. Each of the young adults' families have been acutely aware that the time will come when their children will be judged to have progressed as far as they can in preparation for the move to an Adult Service provision and that it will be time to find an alternative placement. Each family has already experienced the anxieties that this process brings with it. At the time when their children were approaching 19 years of age there was uncertainty as to whether the school would be in a position to start their transitional service and therefore families were embroiled in the process of trying to find an alternative and appropriate adult placement that would fully meet their child's needs. Without exception none could identify a suitable placement within their local area that they considered could meet their child's full range of needs that would enable them to live a fulfilling and enjoyable life. To the best of our knowledge and through the questioning of transitional professionals it seems that this situation has not changed over the last few years. It was against this backdrop that the families started initial conversations between themselves acknowledging that they as a group were unhappy that their children appeared to only have a choice to migrate to one of a small number of establishments that, in their opinion, would offer an inferior support package to the one that they have had access to during their formative years. These discussions naturally led to speculation as to whether there was an alternative path for our young people and we decided that we owed it to our children to explore the feasibility of putting together a bespoke supported living solution for our group of young people who have expressed an interest in continuing to live together. These investigations were in very early stages when in early May 2012 the parents were invited to join the East Sussex County Council SEN and Disability Pathfinder. The families, each with their child's approval, saw it as an ideal opportunity for us to explore and determine whether there is different option for our children that could potentially lead to a happier, more fulfilling and self determining life in adulthood than would ordinarily be available through established & traditional transitional gateways. Our Approach So Far: Scoping Meeting We have been keen to establish early in this process whether our four families hold common views and aspirations for the type of provision that we would like made available to our Young People in the future, therefore with the assistance of a number of senior staff from the school, we recently held a meeting of the parents to assess the commonality of thoughts across our group.

Reflecting on some of the information and examples that we have been exposed to during early Pathfinder Family and Key Worker briefings that we have attended we began by inviting each attendee to state what each would hope for their child after school. The output of this brain storming session was then categorised and further information was subsequently added to provide a more detailed specification of the type of input and resource that we believe that they will need in the future. The group acknowledged the fact that detailed care & medical plans are in existence for each individual and that these could be used at a later point to establish precisely the levels of support required in each area for providing any future solution. It was also recognised that there was a need to provide a mechanism that would enable each of the young adults to independently express their preferences of how they wish to live their lives after school. Whilst the parents are confident that if the aims of this project become reality then their children will grasp the opportunities that it will deliver, this approach will act as a necessary and important safeguard to ensure that parental influence is not a material factor in them opting for this approach. To this end and with the kind assistance of the Transitional Services Management, the young people, as part of a larger peer group, have recently embarked on a project that will explore the life options available to adults with disabilities so that they can broaden their knowledge base and make an informed judgement about what they feel will be most appropriate to meet their individual aspirations and circumstances. This output will of course become a principle driver of the direction that this project will take. Scoping Meeting Output In answer to the question posed to the Parents "What are your hopes for your Child after their current placement has ended"? the following responses were recorded and collectively supported; I would like them to; Enjoy Life o Have the opportunity to interact with friends, family & the community o Have things to do during the day that are meaningful & fulfilling o Have the assistance they need to socialise & follow their own interests Live in a safe, stimulating & supportive environment similar to that they have now o Have a home environment that is predominantly their home and not someone's workplace

o Live somewhere local, near to family and in a Community (some YP prefer a rural or semi-rural setting i.e. in a village with a pub, shop etc. within walking distance) o Have access to Information Technology, broadband, wifi, internet etc, to communicate and keep up with events Be able to exercise the right of self determination and be as independent as possible as an individual; o Choose who they live with o Have greater control over their environment; choices of staff, companions, activities etc. o Have informed choices (access to information to make realistic choices) o Have the ability to move if they wish to Have the help & support that they require to live their lives as they choose to and to keep them safe and comfortable o Have local or home access to the therapies / medical support that they require o Be mentally and emotionally supported by key carers that have a reasonable understanding of some of the psychological strains that can arise for those living with a profound physical disability. o Have fully trained staff (gastrostomy care, epilepsy aware etc.) o Night care (awake at all times) o Have informed GP/Other support with regular visits and quick response nursing support to deal with urgent issues. o Be in a stable, long-term home that doesnt rely on me (parent) always being there to organize and oversee his/her life

Identifying the building blocks required to engineer a workable, affordable & sustainable solution that meets our hopes and aspirations for the way we would like to see our children be allowed to live their lives. Each of our young people can be described as having an assistance and care need that is at the very high end of the scale. All are wheelchair users & are unable to transfer from and to their chairs without being hoisted. They each are each extremely vulnerable and need constant accompaniment to keep them safe. Equally, all are non verbal but use whatever means that are available to them to communicate; these methods include eye pointing, the use of VOCAs , symbol communication books, spelling out words on letter grids etc. They need assistance for all aspects of their everyday living, be it eating & drinking, hygiene, postural management, medication administration or help with whatever activities they choose to be involved in. Although their physical disabilities make them highly dependent on care and assistance from others they are not intellectually impaired. They each have an expectation that they should be allowed to live in an environment that provides enough support for the individual to be as independent as their

disability allows and have the opportunity to socialise, interact with other people and lead as normal a life as possible by expressing their own preferences and making their own choices. When considering the young adults holistic needs in a future home environment it is clear that concentration on only their physical issues and frailties will not be sufficient. It is equally important to identify strategies that will bring fulfilment to their sense of wellbeing and inclusion in society (in the areas that they choose). Therefore in the categories outlined within the chart shown below we provide further detail that encompass the other vital areas required for them to lead the type of life that they are entitled to and that we wish for them.

Care & Support

Carers & Health etc.

Social & Communit y

Interaction etc.

Sense of Purpose
Enterprise etc.

Self determinatio n
Choice of how you

Material Requirement s
Accommodation, transport etc.

Long term sustainability

Self managing, supported

Care & Support As has already been outlined, the four young adults have very high care and support needs and rather than providing a detailed schedule of their precise requirements (these are available in their individual care and health plans) the following section outlines at a high level, the assistance and support the group receive now while in their current placement. Due to the nature of their conditions it is highly unlikely that the level of support they need in this area will diminish in the future; Care / Residential Assistance o 24 hour presence including night staff awake & alert to deal with any issues that arise. o A care approach that extends beyond just physical needs and is capable of providing psychological support to individuals who are naturally susceptible to greater than average anxiety levels and who often require encouragement to help them maintain a positive outlook on life

o Staffing approach that incorporates robust management with access to alternative backup staffing to cover absences & ensure adequate coverage at all times. o Feeding & drinking assistance including gastrostomy feeding regimes o Dressing, bathing, hygiene, continence care etc. o Medication administration that involves decision making where 'as required' drugs are prescribed (Nurses in the current provision currently oversee this category of medication). o Preparation of meals that are of suitable textures & consistencies to enable food to be taken orally. o Hoisting, positioning and everyday postural management o Wheelchair and other equipment care and general day to day use. o Awareness of early signs of potential issues, i.e. seizures, bowel issues, pressure sores, chest infections etc. so that medical input can be sought at an early stage o Providing the opportunity for the young adults to follow exercise regimes set with Physiotherapist input. i.e. swimming, mat exercises etc. o Accompaniment and transport to off site medical appointments Health Care (provided through a multi-disciplinary approach) o Regular Physiotherapy including sleeping system solutions / modifications etc. o SALT input to support eating, drinking, communication systems etc. o Suctioning & airway management where required o Occupational Therapy input dealing with o Equipment modifications as a result of postural changes o Identification of seating & hoisting solutions o Rehabilitation Engineering Services for equipment repair and bespoke solutions i.e. shower / toilet chairs o Wheelchair services, Power & Manual chair supply and maintenance, bespoke seating solutions and modifications. o General Medical input including access to doctors & nurses to deal with a wide range of issues; both urgent and non-urgent. o Dietician; overseeing Gastrostomy feed regimes; weight & nutritional monitoring. Social & Community Naturally the majority of the group's current social & community network centres around their current placement where they each have attended school, used respite facilities or been in residence for the last 10 to 18 years. They also participate in a wide range of social activities that are organised, with the young people's preferences taken into account, through the Transitional Service. The activities that they are able to participate in include wheelchair football, Boccia, visits to pubs, clubs, visiting friends etc. together with the opportunity to take part in one off events; Shows, visits to Motor Racing events and other activities during their leisure time. They also maintain links with the community in a variety of ways, these include; attendance at

courses, through previous association with the school Scout troop and by participating in Wheelchair Football Tournaments. It is clear that in any future home these social & community networks and the opportunity to take part in social activities that interest them will have to be either maintained or replaced (in reality it will be a mixture of both) to ensure that the young people don't become isolated and continue to come into contact and continue to have the choice to interact with a wide spectrum of the community where they wish to. Sense of Purpose Each of the young adults thrive on being involved in intellectually stimulating activities during their 'working' day and they particularly enjoy engaging in productive tasks that stretch their minds, and when they succeed against set objectives, return a positive outcome and a sense of achievement. They definitely do not respond in a positive manner to continual exposure to therapy based activities demonstrating that they have active minds to occupy and a hunger to be involved in meaningful and mentally challenging tasks. Through the Transitional Service they currently have a set weekly activities schedule that is determined through agreement with each individual and the Activities Co-ordinator. The activities are broadly based and include IT, attendance at certain weekly one day courses (where available & the facilities allow), photography, managing budgets and input into on site enterprises (selling home produced eggs, garden vegetables) etc. Most of the group have a strong desire to be engaged in and experience 'real' employment at some point in the future and whilst there have been attempts to identify opportunities for them to participate in work experience programmes they have been very difficult to source and consequently such opportunities have been very rare and for some individuals non-existent. It will therefore be vital that in any progression from the school to a new home that substitute activities / opportunities for employment are identified and made available to the group that at the least maintain and if possible build on the positive sense of purpose each individual currently has. Solutions could include some form of small enterprise that involved them in areas of a business where they were able to contribute in a meaningful way; the identification of an appropriate day centre with programmes that interested and would engage each individual; or, opportunities for employment whether they be on a paid or voluntary basis. Ideally a combination in each of these categories would be desirable so that each individual could exercise their choice. Self Determination One of the big motivations for the Parent Group in seeking to identify whether there is an opportunity to set up and establish a shared supported living arrangement is the opportunity that it would give our Children to achieve an

enhanced level of independence in their future lives than they would otherwise have, given their individual circumstances. We believe that a natural by-product of increased independence is an increase in choices available to each individual, whether it is in the way they choose to conduct their daily lives, who they choose to have as their carers, where they choose to live or work or who they choose to live with. As they move through life they, like any other person, are likely to develop and change their aspirations & ambitions. It is therefore important that any future living arrangement recognises & legislates for any such changes and incorporates strategies that will deal with major changes in a reasonable manner. Material Resources In some ways the material resources required to run a home for four disabled adults are the most tangible and easiest aspect of our project to specify for the parent group and other people directly involved in this process to date. They naturally flow through from the information given in the previous sections of this document. Suffice to say, any property would need to be fully accessible to wheelchairs, have sufficient space to accommodate their vast array of equipment (power & manual chairs, bespoke lounge chairs, bespoke tilting / reclining beds, toilet moulds, feeding pumps etc. etc.) and would need sufficient and appropriate hoisting equipment. It would also need to provide individual bath / shower / wet room facilities together with an accommodation layout that enabled private space for each individual but didn't isolate them to the extent that they couldn't easily summon help when they needed it. Ideally the property would also be energy efficient, have a garden that was conducive with driving switch operated power chairs around it and had an environmental control system that would act to empower the individuals independence. An absolute necessity for our young people (and it would be a deal breaker if it wasn't available!) would be access to a decent internet service so they could continue to use social network sites, Skype etc. to keep in touch with friends & family and to have access to sites to assist them in pursuing their own interests. They would also of course need access to wheelchair accessible transport facilities with sufficient space around the property for parking and loading and unloading. The location of any suitable property would be largely dependent upon solutions identified within the sections covering Social & Community and Sense of Purpose. Some of the young people have expressed a preference to live in a rural village type environment with some local amenities so they could walk to the local shop and pub without always having to go through the time consuming process of being loaded and unloaded from their vehicle. The main criteria however for its location would be that it was within a reasonable

travelling distance of their friends & family and was situated in a recognised 'safe' area. Sustainability Inevitably as the Parent Group get older, over time we will become less able to oversee and nurture our offspring, who, whilst they are able to demonstrate certain levels of independence, are still individuals with extremely complex care & health needs and consequently they will continue to require vigilant monitoring and responsive input to maintain their health levels and general wellbeing. We also need to plan for and be content that we have put in place appropriate arrangements to ensure their future comfort and safety for when our lives end. It is therefore essential in our view that any future home for our children carries with it robust mechanisms to ensure that there is long term certainty that all aspects of its management, financing, functionality and focus on each individual that chooses to make it their home are self maintaining. We, the Parent Group, understand some of the complexities and barriers to achieving this goal and recognise that we would need to involve third parties for advice and in some cases engage ongoing services to realise this ambition. Such services and advice sources that we have considered are those providing Advocacy, Housing Associations, Charitable Institutions, Alternative methods of managing payments & expenses, Specialist Legal advice etc. Conclusion The four families do not underestimate the complexity and magnitude of this project, both in terms of the high resource requirement that it will bring and through the many and varied points of expertise that will need to be drawn on to identify workable solutions to meet the multiple requirements set out in this document. We recognise that as well as meeting the requirements of the young people, any solution will need to be affordable and financially sustainable and we are fully prepared to work with Care, Health and Education agencies in an open and transparent manner to identify positive outcomes that, if successful, can form the basis of a template that can be applied to and benefit other adults in a similar situation to our children. We have a belief that that this approach has the capability to deliver improved outcomes for our young people in their future lives when compared with current traditional care options, it also has the potential to be equally or more financially efficient than existing pathways to adult living for people with profound and complex disabilities. We welcome the change of emphasis that the SEND Pathfinder approach brings with it in terms of promoting transparency to families and working in partnership and as equals with them. Consequently we look forward to engaging with the East Sussex SEND Pathfinder team and other experts to discuss next steps and to begin to formulate an approach that will establish

whether the hopes and aspirations that the four families have for their children are capable of being realised.