SE7_Case_Study_Final%5b1%5d.pdf

7/27/2019 SE7_Case_Study_Final%5b1%5d.pdf

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SEND PATHFINDER: SOUTH EAST 7 CASE STUDY

Pathfinder Name: South East 7 (SE7)

Local Authorities and healthauthorities involved:

Brighton and Hove City CouncilEast Sussex County CouncilHampshire County CouncilKent County CouncilMedway County CouncilSurrey County CouncilWest Sussex County CouncilNHS Kent and MedwayNHS HampshireNHS Sussex

NHS Surrey

Pathfinder Activity:

Next Steps References:

SE7: Overarching agreements and commonframeworks

A single assessment process and Education,Health and Care Plan;Giving parents greater control, pg 10,para 17-19;Preparing for Adulthood, Chapter 4

ContextThe South East 7 (SE7) Pathfinder comprises Local Authorities with theirhealth and Voluntary and Community Sector (VCS) partners in the followingareas Brighton & Hove, East Sussex, Hampshire, Kent, Medway, Surrey,and West Sussex. There are well over 1 million children and young people inthis Pathfinder, with over 24,000 of these having a statement of SEN. Thepartnership has developed overarching regional frameworks and each area isworking within these but testing different approaches and with different groupsof 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 ofyoung people and their families. Although the detail of approaches is differentlocally, this overarching ethos will help with consistency and portability acrossthe region. The partnership governance of SE7 is shown in the diagram inAppendix 1.

Pathfinder Activity

There are a wide range of different activities and work streams within thedifferent areas of SE7. However, this case study focuses on the overarchingagreements and common frameworks that have been developed as part ofthe Pathfinder activity, with a few specific examples of emerging good practice

provided.


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Parent carer participation and the participation of children and youngpeopleParent carer involvement and engagement are at the heart of the SE7Pathfinder activity. The key success factor has been the strong SE7commitment to parents and professionals working on the Pathfinder on equal

terms. Another key feature of the SE7 approach which has led to positiveoutcomes is that the SE7 Parent Carer Forums meet regionally on a regularbasis, which has enabled them to share their learning and develop their roleacross the region, as well as in their own local areas.

Parent carers are represented on the Regional Steering Group and on each ofthe seven Local Change Boards. SE7 aims to showcase best practice inengaging parent carers by having a transparent and fair regional Pathfinderparticipation statement, which supports, values and remunerates theircontribution to the Pathfinder. This statement is provided in Appendix 2 andthe 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 andprofessionals. All Pathfinder workshops and development activity involvesparents 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 theirviews and wishes. As an example, East Sussex has commissioned a group ofyoung inspectors up to the age of 25 with special educational needs anddisability, to produce a DVD to portray their life experiences and test theattitudes of their peers who do not have a special educational needs or

disability. The region has commissioned a VCS organisation to develop aregional children and young peoples participation approach to inform thework of the Pathfinder.

Assessment and planningAlthough there are differences in approach and process, SE7 has agreed aset of overarching principles, a common language and a common frameworkfor their assessment and planning. The common framework is provided inAppendix 4 and key steps are summarised below:

Entry The family/practitioner who identifies that the child or young personhas 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 anyadditional assessment information that may be needed.

Agree and allocate - The parent carers and key working practitioner (alongwith other relevant practitioners) will agree the strengths, weaknesses andneeds of the child or young person. Together they will agree on thedesired individual outcomes for the child and agree a priority for these.

Plan - The parent carers, key working practitioner and relevant practitionersdevelop a plan for the support that will be needed for the child or youngperson and their family to achieve the identified outcomes. The plan will

set out accountabilities and time-scales.


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Review and Learn - The parent carers, key working practitioner andrelevant practitioners will agree how often the plan should be reviewed. Itwill be reviewed when there are any significant changes to the child oryoung persons or their familys situation.

At all times, parent carers and VCS groups have been involved and all plansare parent carer/child/young person owned and personalised.

With regards to mediation, SE7s approach is to embed family resilience intothe process, so that the family is able to build on their own knowledge, skillsand experience. Engagement with families will be a constant theme runningthroughout all dialogue and as such mediation is not seen as a specific,separate stage.

Personal budgetsA series of regional workshops have been held facilitated by In Control1 toagree an SE7 framework for Choice and Control. This framework treats

personal budgets as just one part of a whole approach to support, with thefocus being on making the best use of the child and familys real wealth andusing outcomes as a basis for making the budget allocation and in developingthe support plan.

The level of progress and detail in the personal budget offer differs at the locallevel. The lead authority, West Sussex, is the most advanced in this area andis conducting a pilot of personal budgets in children's social care. 26 familiesare going or have gone through the process of assessment and supportplanning, with 18 'live' budgets in place, and parents are already beginning toreport improved outcomes for their children and families. East Sussex alsohas 12 families who are piloting personal budgets in social care.

All SE7 authorities are working on offering educational personal budgets andare focusing on home to school transport in the first instance. Most SE7 areasare exploring piloting health personal budgets.

The local offerA working group of parent carers and parent partnership services across SE7is consulting with parent carers and practitioners to produce regionalprinciples for its local offer framework. A draft of the local offer principles isprovided in Appendix 5.

Banded funding

A draft framework for banded funding is being produced by a range ofPathfinders in SE7, including in Hampshire. The long-term aim of the group isto build a framework which encompasses health and care as well aseducation-funded provision, although for practical purposes it may benecessary to focus for now principally on education and extend only into thoseareas of health and care which presently cause significant cross-boundaryissues e.g. various therapy-related services.

Short breaksHampshire County Council want to enable children and young people with

1

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


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disabilities and additional needs to join in with safe, entertaining andinteresting activities, whilst giving their parents or full-time carers anopportunity to have a short break from caring. The County Council hasworked very closely with parent carers and activity providers to ensure thatthe 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 thefamilies and carers of children and young people with disabilities andadditional needs can participate fully in the development of services withinHampshire. They have recently worked with Hampshire on the review of theirShort Break Statement.

Supporting young people at key transition agesEast Sussex is working with Preparing for Adulthood2 to support young peopleat key transition ages. The East Sussex Preparing for Adulthood element ofthe 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 complexphysical disabilities. These four young people recently expressed a desire toinvestigate the possibility of living together in the community. Their families,inspired by the SEND Green Paper, have joined forces and produced aproposal based on the young people's aspirations and the families own ideas,and they are now working with local agencies to put their proposal intopractice.

A summary of this Pathfinder project is provided in Appendix 6 and thefamilies 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 andwww.sendPathfinder.co.uk/Pathfinder/

Overcoming Barriers

There are always challenges in working together across boundaries andagencies. However, SE7 started with an agreement on principles of workingand approaches to service change. This has made a difference to the abilityof all of the different areas to work within a common framework.

The complexity relating to the implementation of the new school fundingproposals 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 setup relevant and effective frameworks for systems, organisation and practiceand to ensure, above all, the engagement of parent carers. Most of theenergies have been focused at a local level on determining the singleassessment process and recruiting families. Examples of various activitiescan be found throughout this case study. In addition, in East Sussex, aconsultant has been recruited to work with schools to develop their local offers

2For more information about Preparing for Adulthood see www.preparingforadulthood.org.uk


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and a stakeholder conference is to be held in October. In Surrey, severalschools have also been approached to be part of the process for compilingand testing the Surrey local offer during the Pathfinder period.

This joint approach should ensure that families in all SE7 authorities haveequal opportunities to benefit from good practice approaches to theimplementation 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 willhelp with consistency and portability across the region. The ethos issupported by the regional approach for key working and the role of personalbudgets in helping to achieve personal choice and control. Early Support keyworking training and training sessions with In Control on personal budgetsunderpins this.

It is too early to make a genuine assessment of the value for money ofproposed 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 stepsinvolved in the assessment pathway. However, it has identified that significantkey working training time and cost is being catered for and that thesustainability of this element will need to be measured during the Pathfinder.


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Appendix 1: Partnership governance of SE7


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Appendix 2: SE7 SEND Pathfinder Regional Parent Carer ParticipationStatement

Attached


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Appendix 3: SE7 SEND Pathfinder Regional Framework for Parent CarerParticipation

Attached


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Appendix 4: SE7 shared Framework for Assessment and Planning

Attached


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Appendix 5: SE7 principles for the local offer3

Co-produced by parent carers, young people and professionalsIt is central to the work of the SE7 Pathfinder that everything we do is throughpartnership and our regional local offer framework and each SE7 Local Offerwill be developed jointly by parent carers, young people and professionals.

Empowering for parent carers, young people & professionalsOur Local Offers should empower parent carers, young people andprofessionals by setting out clearly what can be expected locally, how toaccess services and where to find further information. This knowledge willenable 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 SE7steering group in the Autumn.


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to hold services to account. This knowledge will support professionalsunderstanding of what is available and enable them to advise parent carersand young people accurately.

Accessible

Parent carers should be able to find our Local Offers easily and understandthe content. The design will be flexible to enable access by the widest groupof parent carers and young people possible. For example this could includepictures, podcasts and flowcharts. Clear and jargon free language will beused. It will be widely available in the public domain and provide informationon where to find extra support.

HolisticOur Local Offers will cover ages 0-25 and contain information about servicesfrom 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 availableOur Local Offers will provide clear information about what is openly availablewithout the need for particular specialist assessments in order to access it.

TransparencyOur Local Offers will set out the path from initial query to outcome and publishand explain eligibility criteria. They will show the routes to access servicesand support including timescales and responsibilities. There will be an honest

explanation of how decisions are made and by whom. Options will be set outwith clear pathways for action and directions about what to do and where togo if things go wrong.

Sustainable and sustainedOur 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 willavoid duplication and use effective links. There will be clear arrangements forfeedback from users and for review by the co-producers parent carers,young people and professionals.

FactualOur Local Offers will be clear, factual and honest about current practice andprovision. They will help parent carers, young people and professionals knowwhat they can reasonably expect. Our Local Offers will recognise gaps,limitations and service changes and point towards possible alternatives. Theywill include information about how parent carers, young people andprofessionals can be involved in and influence policy and practice.


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What has the initial feedback from parent carers and professionals toldus?Feedback on the Principles was very positive some particular comments onhow 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 isclear.Need to be clear on the purpose of the Local Offer and who it is aimed atConcern about the term practitioners now changed to professionalsThe Local Offer should set out how parents can participate and what aretheir rights in terms of participating in decisions about their childParent Carers want explanations of terms eg P Scales/NC LevelsThe Local Offer should include information about training available toparents perhaps an upcoming events calendarMay 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 workingtogether

Accessible principle:Information must be flexible and proportionate so not to overloadUse icons and pictures to help clarity also be aware of the visuallyimpairedNot everyone has a computer and internet accessNeed access points across the communityShould be able to filter the information including by postcodeUse of key words is very important so the Local Offer is fully searchableon the webThe Local Offer also needs people to help parents navigate andunderstand the informationHaving the information in tiers will be helpfulThere 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 schoolsThe Local Offer should include vocational coursesShould include after school clubsInformation about support groups for parents should be includedGroups to be aware of Home Educators and Early Years who do nothave access to a school

Starts with the widely available principle:

The Local Offer must not just focus on children and young people with asingle plan but include lower levels of need


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Transparency principle:

Include a what to do if you are not eligible sectionFunding should be clearly signposted and the thresholds for accessing thisAccountability is very important

Must include a what to do if things go wrong sectionClear language stating right and responsibilities for being a parent carerInclude 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 itunder review

Essential Features of the SE7 Local Offers

Consistent format across the regionHas both SE7 and local brandingAccess points available across the communitySupported by trained people who can guide parent carers through itComprehensive but not unwieldySets out its purpose and who it is aimed atSearchable on the internetIncludes a feedback facility on the local offer itself for usersIncludes both local area wide standards and information and also servicespecific information

Desirable Features of the SE7 Local Offers

Searches can be filtered by area, age, need etcIncludes a feedback facility on individual services for users


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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 areyoung people aged 20-21 with very complex physical disabilities.

The four young people have attended an independent residential specialschool for most of their school careers. The school has now established aresidential unit for young people over the age of 19, however there is noformal education provision within the unit. The provision was establishedbecause of a lack of other opportunities for the young people.

The four young people recently expressed a desire to investigate thepossibility of living together in the community. Their families have joined

forces and produced a proposal based on the young people's aspirations andthe 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 trustFear of disappointing the young people

Starting something that wont be finished

However, the document prepared by the families setting out their aspirationswas agreed and adopted by all partners in July 2012. The Pathfinderrequested support from Preparing for Adulthood, to scope next steps,timescales and support, and a meeting with parents and partners will takeplace in September 2012 to begin the process of detailed planning forimplementation.

The single assessment process and EHC planning is being used to help theyoung people and their families to plan the move from the residential school toindependent living in the community, taking account of the young people'saspirations and their complex health and housing needs. The young peopleare also keen to explore future education and employment.

The provider and the local authority have agreed to continue this work beyondthe life of the pathfinder as it is a longer term project.

Funding will be sought from the young people's continuing health carebudgets as well as their social care budgets and other funding streams such

as housing and council tax benefits, education and employment funding tosustain and meet the costs of making this happen.


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


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Appendix 7: Families proposal for young people

Exploring A Different Life Option for a Group of Young Adults LeavingSpecial 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 ourthoughts 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 theirongoing complex needs.

We have each been active in involving our children in general concepts ofwhat may be available to them in the future but have been careful not to bespecific so as not to raise expectations unnecessarily as experience tells usthat speculation about major changes in their lives has a destabilising effecton 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 fullsolution and that our group will need expert input from a variety of sources forus to establish whether a bespoke future living solution of such a complexnature is feasible for our young people.

Background

They are a group of young adults aged 20 & 21 with profound and complexphysical 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 inthe School's unique environment where their educational, emotional, social,medical and care needs have been admirably met. At age 19, the youngadults became resident in the school's recently opened transitional service for19 to 25 year olds which is where they are currently living either on apermanent or on a home either every or every other weekend basis.

The Transitional Service, whilst it doesn't include a formal educationalelement, was created and designed to equip disabled young adults with thelife skills that will be needed for their future lives; recognising the fact that forthose with extremely complex needs, a straight move from a vibrant andnurturing school environment to an external adult placement in most casesproves to be extremely challenging and in some intolerable. The service


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provides continuity of care with access to multi-disciplinary on site medicalservices whilst it builds on independence, life and social skills to betterprepare 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 canin preparation for the move to an Adult Service provision and that it will betime to find an alternative placement. Each family has already experiencedthe anxietiesthat this process brings with it. At the time when their children wereapproaching 19 years of age there was uncertainty as to whether the schoolwould be in a position to start their transitional service and therefore familieswere embroiled in the process of trying to find an alternative and appropriateadult placement that would fully meet their child's needs. Without exceptionnone could identify a suitable placement within their local area that theyconsidered 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 throughthe questioning of transitional professionals it seems that this situation has notchanged over the last few years.

It was against this backdrop that the families started initial conversationsbetween themselves acknowledging that they as a group were unhappy thattheir children appeared to only have a choice to migrate to one of a smallnumber of establishments that, in their opinion, would offer an inferior supportpackage to the one that they have had access to during their formative years.These discussions naturally led to speculation as to whether there was analternative path for our young people and we decided that we owed it to ourchildren to explore the feasibility of putting together a bespoke supportedliving solution for our group of young people who have expressed an interestin continuing to live together.

These investigations were in very early stages when in early May 2012 theparents were invited to join the East Sussex County Council SEN andDisability Pathfinder. The families, each with their child's approval, saw it asan ideal opportunity for us to explore and determine whether there is differentoption for our children that could potentially lead to a happier, more fulfillingand 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 familieshold common views and aspirations for the type of provision that we wouldlike made available to our Young People in the future, therefore with theassistance of a number of senior staff from the school, we recently held a

meeting of the parents to assess the commonality of thoughts across ourgroup.


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Reflecting on some of the information and examples that we have beenexposed to during early Pathfinder Family and Key Worker briefings that wehave attended we began by inviting each attendee to state what each wouldhope for their child after school. The output of this brain storming session was

then categorised and further information was subsequently added to provide amore detailed specification of the type of input and resource that we believethat they will need in the future.

The group acknowledged the fact that detailed care & medical plans are inexistence for each individual and that these could be used at a later point toestablish precisely the levels of support required in each area for providingany future solution.

It was also recognised that there was a need to provide a mechanism thatwould enable each of the young adults to independently express their

preferences of how they wish to live their lives after school. Whilst the parentsare confident that if the aims of this project become reality then their childrenwill grasp the opportunities that it will deliver, this approach will act as anecessary and important safeguard to ensure that parental influence is not amaterial factor in them opting for this approach. To this end and with the kindassistance of the Transitional Services Management, the young people, aspart of a larger peer group, have recently embarked on a project that willexplore the life options available to adults with disabilities so that they canbroaden their knowledge base and make an informed judgement about whatthey feel will be most appropriate to meet their individual aspirations andcircumstances. This output will of course become a principle driver of thedirection that this project will take.

Scoping Meeting Output

In answer to the question posed to the Parents "What are your hopes for yourChild after their current placement has ended"? the following responses wererecorded and collectively supported;

I would like them to;

Enjoy Lifeo Have the opportunity to interact with friends, family & the

communityo Have things to do during the day that are meaningful & fulfillingo Have the assistance they need to socialise & follow their own

interests

Live in a safe, stimulating & supportive environment similar to that theyhave now

o Have a home environment that is predominantly their home andnot someone's workplace


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o Live somewhere local, near to family and in a Community (someYP 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 asindependent as possible as an individual;

o Choose who they live witho 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 theychoose to and to keep them safe and comfortable

o Have local or home access to the therapies / medical supportthat they require

o Be mentally and emotionally supported by key carers that havea reasonable understanding of some of the psychological strainsthat 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 aspirationsfor the way we would like to see our children be allowed to live theirlives.

Each of our young people can be described as having an assistance and careneed 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 eachare each extremely vulnerable and need constant accompaniment to keepthem safe. Equally, all are non verbal but use whatever means that areavailable to them to communicate; these methods include eye pointing, theuse of VOCAs , symbol communication books, spelling out words on lettergrids etc. They need assistance for all aspects of their everyday living, be iteating & drinking, hygiene, postural management, medication administrationor help with whatever activities they choose to be involved in.

Although their physical disabilities make them highly dependent on care andassistance from others they are not intellectually impaired. They each have an

expectation that they should be allowed to live in an environment thatprovides enough support for the individual to be as independent as their


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disability allows and have the opportunity to socialise, interact with otherpeople and lead as normal a life as possible by expressing their ownpreferences 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 andfrailties will not be sufficient. It is equally important to identify strategies thatwill bring fulfilment to their sense of wellbeing and inclusion in society (in theareas that they choose). Therefore in the categories outlined within the chartshown below we provide further detail that encompass the other vital areasrequired for them to lead the type of life that they are entitled to and that wewish for them.

Care & Support

As has already been outlined, the four young adults have very high care andsupport needs and rather than providing a detailed schedule of their preciserequirements (these are available in their individual care and health plans) thefollowing section outlines at a high level, the assistance and support the groupreceive now while in their current placement. Due to the nature of theirconditions it is highly unlikely that the level of support they need in this areawill diminish in the future;

Care / Residential Assistance

o 24 hour presence including night staff awake & alert to deal with anyissues that arise.

o A care approach that extends beyond just physical needs and iscapable of providing psychological support to individuals who arenaturally susceptible to greater than average anxiety levels and who

often require encouragement to help them maintain a positive outlookon life

Care

&SupportCarers & Health

Social

&Community

Sense

ofPurposeEnterprise

MaterialRequirement

sAccommodation,

trans ort etc.

Long termsustainability

Self

determinationChoice of how


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o Staffing approach that incorporates robust management with access toalternative backup staffing to cover absences & ensure adequatecoverage at all times.

o Feeding & drinking assistance including gastrostomy feeding regimeso Dressing, bathing, hygiene, continence care etc.

o Medication administration that involves decision making where 'asrequired' drugs are prescribed (Nurses in the current provision currentlyoversee this category of medication).

o Preparation of meals that are of suitable textures & consistencies toenable food to be taken orally.

o Hoisting, positioning and everyday postural managemento 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 canbe 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 exercisesetc.

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 requiredo Occupational Therapy input dealing with

o Equipment modifications as a result of postural changeso Identification of seating & hoisting solutions

o Rehabilitation Engineering Services for equipment repair and bespokesolutions 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 witha wide range of issues; both urgent and non-urgent.

o Dietician; overseeing Gastrostomy feed regimes; weight & nutritionalmonitoring.

Social & Community

Naturally the majority of the group's current social & community networkcentres around their current placement where they each have attendedschool, 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 theTransitional Service. The activities that they are able to participate in includewheelchair football, Boccia, visits to pubs, clubs, visiting friends etc. togetherwith the opportunity to take part in one off events; Shows, visits to Motor

Racing events and other activities during their leisure time. They also maintainlinks with the community in a variety of ways, these include; attendance at


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courses, through previous association with the school Scout troop and byparticipating in Wheelchair Football Tournaments.

It is clear that in any future home these social & community networks and theopportunity 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 ensurethat the young people don't become isolated and continue to come intocontact and continue to have the choice to interact with a wide spectrum ofthe community where they wish to.

Sense of Purpose

Each of the young adults thrive on being involved in intellectually stimulatingactivities during their 'working' day and they particularly enjoy engaging inproductive tasks that stretch their minds, and when they succeed against setobjectives, return a positive outcome and a sense of achievement. They

definitely do not respond in a positive manner to continual exposure totherapy based activities demonstrating that they have active minds to occupyand a hunger to be involved in meaningful and mentally challenging tasks.

Through the Transitional Service they currently have a set weekly activitiesschedule that is determined through agreement with each individual and theActivities Co-ordinator. The activities are broadly based and include IT,attendance at certain weekly one day courses (where available & the facilitiesallow), photography, managing budgets and input into on site enterprises(selling home produced eggs, garden vegetables) etc. Most of the group havea strong desire to be engaged in and experience 'real' employment at somepoint in the future and whilst there have been attempts to identifyopportunities for them to participate in work experience programmes theyhave been very difficult to source and consequently such opportunities havebeen very rare and for some individuals non-existent.

It will therefore be vital that in any progression from the school to a new homethat substitute activities / opportunities for employment are identified andmade available to the group that at the least maintain and if possible build onthe positive sense of purpose each individual currently has. Solutions couldinclude some form of small enterprise that involved them in areas of a

business where they were able to contribute in a meaningful way; theidentification of an appropriate day centre with programmes that interestedand would engage each individual; or, opportunities for employment whetherthey be on a paid or voluntary basis. Ideally a combination in each of thesecategories would be desirable so that each individual could exercise theirchoice.

Self Determination

One of the big motivations for the Parent Group in seeking to identify whetherthere 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


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enhanced level of independence in their future lives than they wouldotherwise have, given their individual circumstances.

We believe that a natural by-product of increased independence is anincrease 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 theymove through life they, like any other person, are likely to develop and changetheir aspirations & ambitions. It is therefore important that any future livingarrangement recognises & legislates for any such changes and incorporatesstrategies 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 disabledadults 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 sectionsof 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, toiletmoulds, feeding pumps etc. etc.) and would need sufficient and appropriatehoisting equipment. It would also need to provide individual bath / shower /wet room facilities together with an accommodation layout that enabledprivate space for each individual but didn't isolate them to the extent that theycouldn't easily summon help when they needed it.

Ideally the property would also be energy efficient, have a garden that wasconducive with driving switch operated power chairs around it and had anenvironmental control system that would act to empower the individualsindependence. An absolute necessity for our young people (and it would be adeal breaker if it wasn't available!) would be access to a decent internetservice so they could continue to use social network sites, Skype etc. to keepin touch with friends & family and to have access to sites to assist them inpursuing their own interests.

They would also of course need access to wheelchair accessible transportfacilities with sufficient space around the property for parking and loading andunloading.

The location of any suitable property would be largely dependent uponsolutions identified within the sections covering Social & Community andSense of Purpose. Some of the young people have expressed a preference tolive in a rural village type environment with some local amenities so they couldwalk to the local shop and pub without always having to go through the timeconsuming process of being loaded and unloaded from their vehicle.The

main criteria however for its location would be that it was within a reasonable


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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 ableto oversee and nurture our offspring, who, whilst they are able to demonstratecertain levels of independence, are still individuals with extremely complexcare & health needs and consequently they will continue to require vigilantmonitoring and responsive input to maintain their health levels and generalwellbeing. We also need to plan for and be content that we have put in placeappropriate arrangements to ensure their future comfort and safety for whenour lives end.

It is therefore essential in our view that any future home for our childrencarries with it robust mechanisms to ensure that there is long term certainty

that all aspects of its management, financing, functionality and focus on eachindividual that chooses to make it their home are self maintaining. We, theParent Group, understand some of the complexities and barriers to achievingthis goal and recognise that we would need to involve third parties for adviceand in some cases engage ongoing services to realise this ambition. Suchservices and advice sources that we have considered are those providingAdvocacy, Housing Associations, Charitable Institutions, Alternative methodsof managing payments & expenses, Specialist Legal advice etc.

Conclusion

The four families do not underestimate the complexity and magnitude of thisproject, both in terms of the high resource requirement that it will bring andthrough the many and varied points of expertise that will need to be drawn onto identify workable solutions to meet the multiple requirements set out in thisdocument.

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 arefully prepared to work with Care, Health and Education agencies in an openand 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 ina similar situation to our children. We have a belief that that this approach hasthe capability to deliver improved outcomes for our young people in theirfuture lives when compared with current traditional care options, it also hasthe potential to be equally or more financially efficient than existing pathwaysto adult living for people with profound and complex disabilities.

We welcome the change of emphasis that the SEND Pathfinder approachbrings with it in terms of promoting transparency to families and working inpartnership and as equals with them. Consequently we look forward toengaging with the East Sussex SEND Pathfinder team and other experts to

discuss next steps and to begin to formulate an approach that will establish


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

SE7_Case_Study_Final%5b1%5d.pdf

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