in control first phase report 2003-2005

A report onin Control’sfirst phase2003-2005C a r l P o l lS i m o n D u f f yP r o f e s s o r C h r i s H at t o nH e l e n S a n d e r s o nM a r t i n R o u t l e d g e

A report onin Control’sfirst phase2003-2005C a r l P o l lS i m o n D u f f yP r o f e s s o r C h r i s H at t o nH e l e n S a n d e r s o nM a r t i n R o u t l e d g e

All chapters © in Control 2006. Foreword © Jo Williams and Rob GreigNo part of this book may be reproduced in any form without permissionfrom the Publisher except for the quotation of brief passages in reviewsPublished in 2006 by in Control Publicationsin Control Publications, PO Box 45377, London SE14 5JUDistributed by in Control PublicationsA catalogue record for this book is available from the British LibraryISBN: 0-9554119-1-2Typeset in Goudy and Frutiger to a design by Henry IlesPrinted in the UK by MoorprintPhotographs: pages 6, 74, 80, MENCAP;pages i-iv, 50, Listening to Us; page 90 Wigan and Leigh Scope;all other photos, charts and graphs © in ControlA report on in Control’s first phase 2003-2005

ContentsF Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1I Introduction .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 A new system of social care .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 A new Operating System .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153 7 steps to being in Control .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 254 Evaluation – self-determination . . . . . . . . . . . . . . . . . . . . . . . . . . . 395 Evaluation – direction .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 496 Evaluation – money .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 617 Evaluation – home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 738 Evaluation – support .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799 Evaluation – community life .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8910 The future for in Control .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97A Appendix 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105List of tables, charts and graphs1. Key terms of the Independent Living and InclusionMovements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.32. in Control’s system of Self-DirectedSupport . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.103. Care managers’ preference for total systemchange . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.114. Care managers’ preference for a change to thecare management role . . . . . . . . . . . . . . . . . . . . . . . . . p.125. The role of in Control’s Operating System . . . . . p.176. The development of a Resource AllocationSystem through four versions . . . . . . . . . . . . . . . . . . p.187. Outcomes in the six in Control pilots . . . . . . . . . . p.208. Professional Gift Model of social care . . . . . . . . . p.279. Citizenship model – Self-Directed Support . . . . p.2810. The in Control System . . . . . . . . . . . . . . . . . . . . . . . . . . p.2811. Planning Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.3112. Measures of a good support plan . . . . . . . . . . . . . p.3213. Managing Personalised Budgets . . . . . . . . . . . . . . . p.3314. Organising Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.3415. Support arrangements available to people withPersonalised Budgets . . . . . . . . . . . . . . . . . . . . . . . . . . . p.3516. Do you make important decisions inyour life? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.4217. Who is the major decision-makerin your life? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.4318. Are you happy with the control youhave over your life? . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.4319. Who is the most appropriate manager? . . . . . . . p.4520. Changes desired and achieved . . . . . . . . . . . . . . . . p.5121. Are you happy with your plans? . . . . . . . . . . . . . . . p.5222. Who is the best planner? . . . . . . . . . . . . . . . . . . . . . . p.5223. Are you happy with your money? . . . . . . . . . . . . . . p.6324. Care managers’ views on whether people fit inControl’s Resource Allocation System . . . . . . . . . p.6525. Profile of needs across 150 cases – 50 ineach of 3 London boroughs . . . . . . . . . . . . . . . . . . . . p.6626. Possible resource allocation compared tocurrent spend in one London borough . . . . . . . . p.6627. Efficiencies produced by the application ofthe RAS in 5 authorities . . . . . . . . . . . . . . . . . . . . . . . . p.6728. Typical local authority expenditure- learning disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.6829. Where people lived before and afterbeing in control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.7530. Are you happy with your home? . . . . . . . . . . . . . . . p.7631. Changes in support used . . . . . . . . . . . . . . . . . . . . . . . p.8132. Are you happy with your support? . . . . . . . . . . . . p.8233. Partners for Inclusion – key principles . . . . . . . . . p.8434. Are you happy with yourcommunity life? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p.9235. in Control’s structure and functions . . . . . . . . . p.101 Contents

ForewordMillions of people in the UK have been helped and supported by the welfaresystem for almost 6 decades. The system is, however, beginning to showa significant number of ‘fault lines’ including a lack of flexibility and an inabilityto respond to the specific and unique experiences of each individual.One of the main complaints of people who receive services is that they feelthey have little, if any, control over decisions about what services they areto receive and how those services are to be delivered. Too often, the prevailingattitude is still that it is the professional or public servant who decideswhat is and what is not acceptable.in Control set out to challenge this problematic situation by exploring howpeople can be given real choice and control over their services and thustheir lives. This report describes the first stage of in Control’s work. It hasbeen exciting, pioneering work and it has demonstrated that being in controlis life enhancing for the individual concerned.Mencap and the Valuing People Support Team are proud to be associatedwith this innovative way of working. The report shows that, although inControl is a relatively new concept, there are important lessons emergingthat could change the very nature of the social welfare system. Some peoplehave experienced radical life changes beyond their hopes and aspirations.It is an extraordinarily enlightened approach that is centred on each personas a citizen with human rights. To date the financial analysis shows that itis also cost effective. The Government is piloting the approach with othergroups of people and this leads us to believe that we are at the beginning ofa social welfare revolution.Read the report, capture the excitement, and think about whether you needto change your approach and behaviours in order to put people in control.Jo WilliamsChief ExecutiveMencaprob Greignational Directorlearning Disabilities Foreword

Introductionin Control builds on decades of work by disabled people, their families andsupportive professionals to overcome the oppression and institutionalisationof disabled people. Justice cannot be done here to the full history ofdisabled people’s fight for the right to control their own lives. It is possible,though, to identify two critical movements. Both have contributedenormously to the thinking behind in Control. They are the IndependentLiving Movement and the Inclusion Movement.These movements have developed in parallel but slightly different ways.Each has its own emphases and language.The following table sets out just some of the key terms and ideas that play apositive role for each movement.FIGURE 1The Independent Living MovementIndependent livingPersonal assistanceUser-led organisationsDirect paymentsAccessibilityThe Inclusion MovementSupported livingPerson-centred planningSelf-AdvocacySelf-determinationCommunity developmentKey terms of the Independent Living and Inclusion MovementsThe subtle differences between these two movements have sometimes ledto confusion and even mistrust. It is clear, though, that the fundamentalvalues of each movement are the same:✳ Each and every human being has their own unique value, regardless of theirdisability✳ Everyone can participate in society and make an important contribution✳ Every individual can lead their own life, with as much autonomy as possible✳ Society should offer the support people need and ensure that thecommunity is fully accessible to all disabled people.These beliefs represent a commitment to treat all disabled people as citizens.in Control’s partners shared these beliefs and so in Control’s fundamentalstarting point was the idea of citizenship. in Control’s system of Self-DirectedSupport, described in this report, is merely a vehicle that disabled peoplecan use to travel towards the goal of genuine citizenship. Introduction

C h a p t e rA new system ofsocial care

Chapter 1A new system of social careSummaryin Control is a partnership, begun by the Valuing People Support Team,Mencap, local authorities and a range of independent organisations.in Control was formed to help social service departments fundamentallychange their social care systems to increase the citizenship of disabled people.in Control calls the new system Self-Directed Support.Work began in 2003 to test Self-Directed Support as a viable model of socialcare in six local authority pilot sites – Essex, Gateshead, Redcar and Cleveland,South Gloucestershire, West Sussex, and Wigan. In 2006 there are80 local authority members of in Control. All these authorities are settingup systems of Self-Directed Support.The pilots focused on people with learning disabilities. However, in Control’ssystem of Self-Directed Support is designed for everyone who usessocial care support.Partnership for changein Control builds on decades of work by disabled people, their families andsupportive professionals to establish the rights of disabled people. Both theIndependent Living Movement and the Inclusion Movement have contributedenormously to the thinking behind in Control.in Control’s particular starting point is the Valuing People White Paper,the most important policy development for people with learning difficultiesin recent years. Valuing People set out the Government’s commitment toensuring that people with learning difficulties are treated as real citizens,who must have Rights, Choice, Independence and Inclusion – the fourprinciples underpinning the Paper’s strategy.It began to be clear to many that a whole new system for delivering socialcare would have to be developed if social care was to respond to the demandsof Valuing People. A new system of social care

In 2003 discussions about how to begin this work took place between SteveJones, then Chief Executive of Wigan Metropolitan Borough Council,Martin Routledge of the Valuing People Support Team (VPST) and JulieStansfield of the North West Training and Development Team. The emergingproject gained strong support from Rob Greig, then leader of the VPSTand Jo Williams, Chief Executive of Mencap.The group also included Helen Sanderson, one of the leading thinkers andpractitioners of person-centred planning, and Simon Duffy of Paradigm (aleading consultancy agency).Simon Duffy had been working on practical systems for individualisingfunding so that individuals had more control of money for their supportsince the early 1990’s. During this time he worked with service providerslike Southwark Consortium and Inclusion Glasgow, and latterly with NorthLanarkshire Council.Carl Poll also joined the team. He was the founder of KeyRing, an innovativecommunity support organisation. He carried a strong commitment tocommunity involvement and social marketing into in Control.By late 2003, under the joint leadership of Mencap and the VPST, the inControl Partnership was born.The early in Control Partnership included a number ofkey organisations:✳ First Step – Trainers and consultants who are people with learning difficulties✳ Helen Sanderson Associates – Leaders on Person-Centred Planning✳ know what i mean – Experts on making information accessible✳ Mencap – The leading charity working for people with learning difficulties✳ NWTDT – The leading development agency for people with learningdifficulties in the North West✳ Paradigm – Consultants and experts on services for people with learningdifficulties✳ Valuing People Support Team – The national team supporting theimplementation of the White Paper.Aided by the sponsorship of the VPST and Mencap (each contributed£60,000), in Control was able to invite local authorities to participate intesting and further developing the model. Essex, Gateshead, Redcar andCleveland, South Gloucestershire, West Sussex and Wigan came forwardas the pilot authorities. Each authority contributed both funding (£20,000each) and a commitment to building a new system of social care in theirareas.A report on in Control’s first phase 2003-2005

Project GroupA national Project Group met monthly to co-ordinate the development ofthe model through action in the pilot sites:Julie Casey, MencapSimon Duffy, in Control/ ParadigmKaren Flood, National Forum of People with Learning DifficultiesCarl Poll, know what i mean/ ParadigmMartin Routledge, VPSTHelen Sanderson, Helen Sanderson AssociatesJulie Stansfield, Val Bracken, NWTDTCaroline Tomlinson, Wigan and Leigh ScopeSteering Groupin Control needed to remain answerable to as wide a group of stakeholdersas possible in the course of this work and so formed a National SteeringGroup.in Control’s Steering Group included:Nicola Bailey, Redcar & Cleveland CouncilIan Berry, Department of HealthLeo Bishop, Essex County CouncilJoe Blott, Wigan CouncilDave Crook, South Gloucestershire CouncilSimon Duffy, in ControlDavid Ellis, Social Care Institute for ExcellenceKaren Flood, National Forum of People with Learning DifficultiesRob Greig, VPST, ChairFrances Hasler, Roy Web, National Centre for Independent LivingLindsay Lowes, Gateshead CouncilJim Mansell, Tizard CentreMartin Routledge, VPSTNeville Short, MencapAndrew Tyson, West Sussex CouncilThe need for a new systemin Control developed its system of Self-Directed Support as a way of supportingdisabled people to have real power and responsibility - a systembased on the principle that disabled people are citizens like other people.Such power and responsibility are conspicuously absent in the lives ofmany disabled people. The impact of this lack of control and participationwere described in the Government’s Improving the Life Chances of DisabledPeople. This important paper notes that disabled people are more A new system of social care

10likely to live in poverty, have fewer educational qualifications, be victimsof hate crimes, live in poorer housing and have less access to transport. 1The paper highlights the disparity between professional aspirations in regardto the citizenship of disabled people and the actual outcomes produced bythe present social care system:The adverse outcomes experienced by many disabled people reducequality of life for both the disabled people themselves andfor their families. Many disabled people feel isolated, unwantedand a burden to society. This has economic and social costs. 2Sceptics about the need for wholesale change might point to social careinnovations that already offer greater control – Direct Payments and personcentredplanning, for example. These are extremely important initiatives,but they have struggled to become mainstream because they do not fit wellwith the rest of the system. Direct Payments are likely to be more attractivewhen greater flexibility is allowed in their use – as will be the case in asystem of Self-Directed Support.Take up of Direct Payments is relatively low. Just under 1% of those withpackages of care in 2003-04 received a Direct Payment (17,300 out ofapproximately 1.74 million people with packages of care). 3As Improving the Life Chances of Disabled People (Improving LifeChances) notes:While Direct Payments have delivered significant choice andcontrol for some people, they are not suitable for everyone. 4FIGURE 2in Control’s system of Self-Directed SupportA report on in Control’s first phase 2003-2005

12Any preconception that care managers might be strongly resistant to suchchange is contradicted by a further outcome from this event. All participantswere in favour of a changed role for care managers.FIGURE 4NoYesCare managers’ preference for a change to the care management role.In a system that facilitates Self-Directed Support there will be increasedscope for creativity and the use of core social work skills. Care managerswill retain a duty of care and represent the local authority in the contractwith the disabled person. They need to agree support plans and take part inthe review.If, however, disabled people make their own assessments according to anopen and public Resource Allocation System – and if those people writetheir own support plans and organise their own support – care managers willbe released to focus on other tasks.They will be able to focus energy on working with people who are in complexsituations and on the high-cost, out-of-authority placements that mostauthorities have. In this work they can use the social work skills in whichthey are trained rather than spending excessive time processing forms –especially assessments – as many do at present.The support for a new direction in social care comes not just from front-linestaff. In a 2005 report by Verita for the Association of Directors of SocialServices (ADSS), the authors identify a clear trend towards greater spendingon traditional services for people with learning disabilities – at a timewhen policy and customer demand point in the opposite direction.One indicator of this trend is that:In real terms, spend on residential and nursing care more thandoubled between 1995/97 and 2003/04.A report on in Control’s first phase 2003-2005

13The ADSS press release announcing the report concludes that:…the pattern of service improvement and investment in newforms of more individualised service has been very variablenationally. In most parts of the country three quarters of localauthority expenditure is still spent on more traditional services– residential, nursing and day care.The way forward is twofold – to address the underlyingfinancial shortfall and to shift fundamentally the ways much ofthe funding is spent…More expenditure should not be directedto institutional forms of care. There is urgent need to establishbetter commissioning of more flexible and individualisedsupport to people with high needs and for people where thereis risk of their no longer being able to continue living in thecommunity. 7In the following chapters this report details the development of in Control’ssystem, one that is designed precisely to establish ‘better commissioning ofmore flexible and individualised support’.Jon’s storyJon’s story is typical of many whowould gain much from a newsystem of social care.Jon is 47 and he has lived in an institutionsince he was 10. He is still registeredas a hospital in-patient and lives in aresidential community bungalow whichis owned by his local Health Trust.The consequences of this are: he is unableto access the benefits that are availableto citizens living in the community;he doesn’t have his own GP or dentist,but does have a specialist psychiatricconsultant.He would like to move as he doesn’thave much in common with many ofthe people he lives with but he doeslike company. Eight other people live inJon’s bungalow and they are often shortstaffed.He has a big bedroom which he needsfor his hoist and wheelchair and thetoilet is just next door. However, Jonshares his bedroom with another manwho is in his eighties and, although theyappear to get on, they have nothing incommon.Jon likes to make conversation. It isimportant to Jon that he is with peoplewho chat and who use the particularwords and phrases that are importantand familiar to him. None of the peoplehe lives with use words, so Jon frequentlyseeks out staff to make the conversationthat is so important to him. Theycan find this demanding because theyare so busy.Jon likes to look at catalogues and isoften found seated at a table with acatalogue in front of him. Once therehe cannot move. The brakes to thewheelchair are at the back and he can’treach them. Sheila, his Mum, has beentold that they have been put therebecause he fiddles with them. If theybreak, which they frequently do, Joncannot go on the minibus to the daycentre because it would be unsafe. Thenhe spends two or three weeks at home– often looking at catalogues - insteadof going to the day centre. So when Jon A new system of social care

14is found at the table he often says ‘stuckMum, stuck Mum’.Jon’s Mum wants him to be supportedby people who would get to know himwell. They’d get to know him by spendingtime with him and following thingsthrough. They would be people whowould like bowling, chatting and animals;people who share his enthusiasmfor ‘Zorba the Greek’ and singing hymns;people who take care and time when hehas a bath or chooses clothes, and whowill sit with him if something is windinghim up. She knows he is attractedto young, ‘good looking’ women anddoesn’t respond well to men who can beoverpowering. She would like potentialsupport staff to be introduced to Jon beforethey are employed. Then she couldsee if they provoke his ‘beautiful smile’or ‘a hum of contentment’.If Jon’s Mum and his sisters were organisingJon’s support he would be livingwith one or two friends he knows andlikes. He would get support from peoplewho would take the time to care forhim properly. He would be able to enjoydoing the things he loves. He wouldget the chance to go out in the van. Hewould get the equipment he needs toget around his own home. Last, but byno means least; he would have goodhealth care.References1. Improving the Life Chances of Disabled People, Prime Minister’s Strategy Unit, pp10-11.2. Ibid, pp. 10-11.3. Community Care Statistics. Referrals, Assessments and Packages of Care or Adults: England, Department ofHealth, 2004.4. Improving the Life Chances of Disabled People, p. 91.5. Ibid, p. 92.6. Ibid, p. 93.7. Verita, for ADSS, Pressures on Learning Disability Services, The Case for a Review of Current Funding, p.28.A report on in Control’s first phase 2003-2005

15C h a p t e rA new OperatingSystem

17Chapter 2A new Operating SystemSummaryin Control has a unique and innovative way of working, borrowed from theworld of the internet - an open-source Operating System for Self-DirectedSupport.An Editorial Board is responsible for constantly updating and improving thisOperating System based upon the learning and innovations of its local authoritymembers. The latest version of the Operating System is Version 4.0.FIGURE 5Open-source informationThis chapter is entitled ‘A new Operating System’ because of the similarityof in Control’s development approach to that of computer software manufacturers.These companies regularly issue new versions of their softwarethat build in improvements based on an analysis of what worked and didnot work in the last version.Software manufacturers issue new versions in order to stay ahead of competitors.in Control, on the other hand, seeks allies and partners to achievethe change. The Operating System is made available to those who want toimplement it on an open-access basis.The role of in Control’s Operating System A new Operating System

18Continuing the computer analogy, in Control’s system is positioned betweenthe user with their particular software (the local authority) and the computer’shardware (Government policy). The aim is to develop a system whichwill enable local authorities to implement Government policy. Learningfrom implementation can then be fed back to Government and also incorporatedas refinements in new versions. (see Figure 5. on previous page)An example of this way of working is in Control’s Resource Allocation System,the process for determining an individual allocation of funding (Step 1in the system). This system enables people to know right at the beginning ofthe process how much funding is likely to be available for their support.FIGURE 6Version 1 Link to DLA North LanarkshireVersion 2Version 3Based on service clusters.Different funding levels.Built by working backwards from criteria.Self-assessment questionnaire.Best value levels.5 Local Authorities andEssex Radical ReviewTesting begins in 60 sites for transferabilityVersion 4End of levels.Clear cost control.Ability to flex locally.Latest versionFebruary 06The development of a Resource Allocation System through four versionsEach version of the Resource Allocation System incorporates learning gatheredfrom use of the previous version. For example, Versions Two and Threewere based on levels of funding that reflect clusters of actual local spend.Version Four is based on establishing a local ‘price point’, an amount which,when multiplied by the points scored on a self-assessment questionnaire,produces the individual allocation. In reality, all versions are in use. Thereare advantages in using the latest version but, just as in the use of computersoftware, some users prefer to continue using an older version. This older versionmay not include latest refinements but nonetheless still function well.The in Control Editorial BoardResponsibility for the development of in Control’s model of support lieswith an Editorial Board. This Board is made up of a wide variety of agenciesfrom voluntary organisations, self-advocates, and consultancy agencies andincludes representatives from the Valuing People Support Team (VPST)and the Care Services Improvement Partnership (CSIP).in Control tested its system with people with learning disabilities and sothe Editorial Board has consisted mainly of learning disabilities agencies(though the National Centre for Independent Living was represented onthe National Steering Group for the pilot projects). The Steering Groupalso included representation from the Department of Health. The EditorialBoard has evolved from this Steering Group and encourages involvementby other disabled and older people’s groups.A report on in Control’s first phase 2003-2005

19The Board’s main job is to push forward the development of the model.80 authorities are now members of in Control, actively implementing thesystem and feeding back learning within in Control network events. TheEditorial Board then further develops aspects of the model in line withfeedback.During the early phase of in Control a Project Group gathered the informationlearned from the six pilots and this is summarised below.Learning from the pilot sitesIn September 2003 in Control began working with six local authorities totest the model and, in testing it, to develop it further.Each authority agreed to apply the system locally such that 15 people in theauthority would be allocated a personalised budget, create their own supportplan and arrange support that suited them.The six pilot authorities each adopted a particular focus in order to maximiselearning in the project as a whole:✳ Essex – support brokerage.✳ Gateshead – reproviding a hostel✳ Redcar and Cleveland – modernisation of a day service✳ South Gloucestershire – people in out-of-authority placements✳ West Sussex – people with high support needs✳ Wigan – young people in transition from childhood to adulthood.Findings from the evaluation of these projects are included in later chapters.In addition, information about what worked well and not so well in thesix sites was gathered in local stakeholder events.Some of the feedback is included below:✳ In Essex the Brokerage Project played a strong role in helping people achievedesired changes in their lives. At the same time there was an often-repeatedcomplaint that the brokerage role was not made clear enough and this ledto some resistance and discontent amongst care managers. (See the fullreport: Essex Brokerage Pilot – Report on Research Evaluation on in Control’swebsite: www.in-control.org.uk.✳ Gateshead found that the use of a Resource Allocation System to setpersonalised budgets proved very useful, allowing them to allocate funds topeople leaving a hostel and to help people develop services that were moreappropriate. The major obstacle to change was one of achieving a sharedunderstanding of what this new approach would mean to families and tostaff. Gateshead also supported a provider forum that aimed to ensure thatthose people without strong family connections would be able to move outof the hostel into arrangements with strongly individual supports. A new Operating System

20✳ Once Redcar and Cleveland had created a system for setting personalisedbudgets and won political support for the changes, considerable progresswas made with many people either leaving or making much less use of theday centre service. In carrying through the project, the authority was able towork effectively with the PCT.✳ South Gloucestershire: involving people placed out of authority provedchallenging for the Local Authority within the pilot period. Working toinclude people sometimes living hundreds of miles away placed impossibledemands on care manager time. This dilemma remains one to be solved,since amongst the people living out of authority are probably some whowould most benefit from directing their own support and who may be livingin high-cost and unsatisfactory situations. South Gloucestershire insteadfocused on people wanting to change their home situation.✳ West Sussex: in focusing on people with high support needs, West Sussexwere successful in helping a number of people – particularly young peopleat the end of their school years – to gain real control, with a family memberacting as their agent. It was more difficult for three people living in NHSresidential places. They were able to draw up effective support plans withthe help of NHS staff, but implementing the plans, which involved a movefrom the NHS accommodation, proved problematic. A disparity of fundinglevels available in the two services highlighted an historic problem andprevented these three people from moving into their own places in thecommunity – at least during the life of the pilot project.✳ Wigan: a focus on transition confronted the project with the questionof how to include education funding within personalised budgets.Apprehension about the response of education bodies proved unfounded.The Learning and Skills Council and Local Education Authority, as well asthe local college, were supportive. The endorsement of the project providedby the Council’s Chief Executive again proved important in transforming apotentially difficult arrangement into a productive partnership.Despite the relatively short pilot period and ambitious targets, all theauthorities achieved good progress. The following table shows progress forindividuals in each site at July 2005.FIGURE 7Region Recruit Assess AllocateFundsPlan DonePlanAgreedEssex 15 15 7 7 7 7Gateshead 16 16 16 11 7 5Redcar 21 18 18 15 15 15South Gloucs. 16 15 10 9 9 7West Sussex 14 14 14 9 9 6Wigan 15 15 15 15 15 15SupportBeginsOutcomes in the six in Control pilotsA report on in Control’s first phase 2003-2005

21Learning eventsAlongside monthly sessions of the National Project Group (now the inControl Core Team), a number of other learning events were held.These included two national conferences – Images of Success – held notjust to celebrate the emerging successes but to gather views in ‘market-stall’sessions (in which people posted views on different subject boards).Network events were also held and these included ‘think-tank’ sessionsto further understanding of Self-Directed Support and:✳ support brokerage✳ community development✳ new kinds of support provision – external providers✳ new kinds of support – local authority providers✳ resource allocation✳ commissioning✳ transition✳ the whole system.The learning from these events is captured in discussion papers and otherdocuments on the in Control website: www.in-control.org.uk.Open and accessibleOne of the challenges in developing an open-access and universally applicablesystem is the creation of information that is useful to the greatestpossible number of people.in Control has begun the task of providing information that is accessible byissuing a number of key publications.In the Driving Seat is an easy-English workbook that someone can use toproduce their support plan. Top Tips for Supporters is a companion guidefor those helping a disabled person to plan their support. Top Tips is a shortversion of the book Keys to Citizenship by Simon Duffy. 1Further details about in Control’s publications are included in the finalchapter of this report. All publications are available on the website on theopen-access basis described in this chapter. A complete listing can be foundat: http://www.in-control.org.uk/library/a-z.php A new Operating System

22ALAN’S STORYHaving control over support hasmeant that a move from school toresidential home may have beenavoidedIt has now been over a year since AlanJames left school in the North of England.His mother, Mrs James, says, ‘Alantook up so much attention back then,I thought he might only stay at homefor another couple of years before hewould have to move to a residentialplacement.’Before his Direct Payments camethrough, he went to a traditional dayservice, where social services providedone-to-one support. ‘I was worried thathe would end up sitting in the cornerof a large building,’ Mrs James says,‘with nothing or no-one to stimulate hisenthusiasm. Without the right kind ofsupport, I thought, Andrew would spendhis time staring out of the window.’This was the point at which Derek Birtwhistleintroduced Mrs James to the inControl project. Alan’s Person CentredPlanning meeting identified that collegemight not be the right step forward.He needed to be busy, which requiredtwo-to-one support, from peoplehe liked, who understood his epilepsy,were not phased by his disability andwho enjoyed many of the physical andtactile pursuits that he relishes.Redcar and Cleveland had been chosento pilot the in Control project. DerekBirtwhistle had the job of informingpeople and supporting those whochose to give it a try. ‘I knew about MrsJames’ hopes for Alan and I believedin Control would give the family theflexibility they needed to get the rightsupport.’Now that Alan has Direct Payments, hislife has changed significantly, as he isable to employ his own support workers.When searching for support staff,Mrs James looked to people she knewand trusted. ‘I wanted the people whomake his face light up when they walkinto the room,’ she says. ‘People whowere confident in supporting him if hehas a seizure or if he attempts to run inthe street.’These were support staff who also hadthe skills and interest in helping him todevelop his co-ordination and concentration,so that the knowledge he hadgained at school was not lost but becamea part of his life-long learning.Mrs James manages Alan’s income. HisIndependent Living Funding (ILF) andSocial Services funding go into a separateaccount to cover all the expensesof employing carers and everything hedoes during the day. She has optedfor his support worker’s wages to bepaid through the social services pay rolldepartment.‘They do the books, paperwork, tax andso on, which I wouldn’t have time to sitdown and do,’ Mrs James says. ‘Therehave been a few glitches with this systemand the support staff have not alwaysbeen paid on time. However theyseem to have ironed this problem out.I’m generally pleased with the supportI’ve received and how quickly difficultieshave been responded to.’As a result, Alan now has a busy week.Depending on his preferences that dayand of course, the weather, he can nowtake part in a great variety of activities.He loves to be out and about, whetherit is lunch in the pub, walking on thebeach or going swimming. People whoknow Alan have noticed how much helikes to be amongst others.‘I’m really chuffed with his progress,’Mrs James says. ‘He always liked watchingbright images on a screen, but nowhe regularly visits the cinema, and paysfor himself.’A report on in Control’s first phase 2003-2005

23With the encouragement of his supportstaff, he enjoys getting more involvedin what he does. Whether it’s kneadingthe dough when making scones, orrolling the ball when bowling, it’s clearto see that, in a way previously not possible,Alan is now getting stuck into hisactivities.‘It’s because of this increased confidence,’Mrs James says, ‘that I’ve begunto think about the possibility of a holidayfor Alan, where he would be supportedby his carers. I think in Controlcould give him the freedom to have aholiday doing everything he likes.’For the moment, Alan uses some ofhis income for a monthly treat. Lastmonth it was a trip on the North YorkshireSteam Railway. Mrs James wasable to cover all the expenses of petrol,lunch, tickets and staff from his income.‘The great thing is,’ she says, ‘that aslong as it’s clearly accounted for, wecan use the money for Alan on whateverhe likes.’Now, a year into their involvement withthe in Control project, the whole Jamesfamily love having him around. Sundaysoften include a family outing to alake near their home where they hirerowing boats. Prior to in Control, Alanwould have been going on outings likethis on his own.Alan James has a new lease of life. Thefreedom and flexibility the in Controlproject has given him means that heand his family may not think about himmoving for the next ten years. MrsJames’s view of that move is also verydifferent. ‘In the past, my fear was thatAlan would have to go into residentialcare,’ she says. ‘Now, my dream is that,supported by the carers of his choice,he might have his own home.’Endnotes1 Keys to Citizenship, Simon Duffy, Paradigm, 2003. A new Operating System

27Chapter 37 steps to being in ControlSummaryWork in the in Control pilot sites 1 has demonstrated that it is possible toimprove the lives of disabled people by transferring more power and controlto them or those who are close to them.These improvements can be achieved without extra expenditure bystatutory authorities through the creation of a new system of social care– Self-Directed Support.in Control’s system replaces current care management arrangements with a7-step process.Professional gift and citizenship modelsThe change from the prevailing system of social care to one of Self-DirectedSupport can be represented as a move from a professional gift model to oneof citizenship.FIGURE 8CommunityGovernmentProfessionalPerson inNeedContributionvia TaxationFundingfor ServicesAssessmentand supportProfessional Gift Model of social care.Members of the community pay theirtaxes to the government (both central andlocal). Government transfers the fundingto various organisations (Social ServicesDepartments, providers of care, the NHS)so that they can take care of disabledpeople. Disabled people are assessed byprofessionals and care is provided by otherprofessionals.In this model, care comes as a gift,something that cannot be controlled orshaped by the recipient.The alternative model for social care- Self-Directed Support - uses the samecomponents in a radically different way.The disabled person stands at the centreof this system and is assumed to have allthe rights and responsibilities attached to 7 Steps to being in Control

28citizenship. They are expected to be part of the wider community – bothusing the community’s support but also contributing to it.FIGURE 9NegotiatedserviceCitizenEntitlementto fundingGovernmentProfessionalCommunityContribution via taxationCitizenship model – Self-Directed SupportGovernment transfers money directly to the disabled person and allows thedisabled person to organise the services they need and want.The following is the system that in Control developed, according to themethods described in the last chapter – namely, as a constantly refined operatingsystem available to users on an open-access basis.FIGURE 10The in Control System1. Set PersonalisedBudgetThe person can find out how much money they are likely tobe able to receive in a personalised budget.2. Plan support The person can work out how they should use that moneyto meet their needs in a way that suits them best.3. Agree plan The person checks out their Assessment and Support Planwith the local authority or any other funding provider.4. Manage PersonalisedBudgetThe person decides on the best way to manage their PersonalisedBudget.5. Organise support The person organises the housing, help, equipment orother kinds of things they want.6. Live life The person uses support to live a full life with family andfriends in their community.7. Review and learn The person along with the Care Manager checks howthings are going and makes changes if needed.Seven Steps to Being in ControlA report on in Control’s first phase 2003-2005

29principlesPrinciplesFrom the Citizenship model and fromits testing of Self-Directed Support,in Control has distilled a set of keyprinciples that must underpin any socialcare system that claims to create theconditions for the citizenship of disabledpeople.1. Right to Independent LivingIf someone has an impairment whichmeans they need help to fulfil their roleas a citizen, then they should get thehelp they need.I can get the support I need to be anindependent citizen.2. Right to a Personalised BudgetIf someone needs on-going paid help aspart of their life they should be able todecide how the money that pays for thathelp is used.I know how much money I can use formy support.3. Right to Self-DeterminationIf someone needs help to make decisionsthen decision-making should be madeas close to the person as possible,reflecting the person’s own interests andpreferences.I have the authority, support orrepresentation to make my owndecisions.4. Right to AccessibilityThe system of rules within which peoplehave to work must be clear and openin order to maximise the ability of thedisabled person to take control of theirown support.I can understand the rules and systemsand am able to get help easily.5. Right to Flexible FundingWhen someone is using theirpersonalised budget they should befree to spend their funds in the waythat makes best sense to them, withoutunnecessary restrictions.I can use my money flexibly andcreatively.6. Accountability PrincipleThe disabled person and the governmentboth have a responsibility to each otherto explain their decisions and to sharewhat they have learnt.I should tell people how I used mymoney and anything I’ve learnt.7. Capacity PrincipleDisabled people, their families and theircommunities must not be assumed tobe incapable of managing their ownsupport, learning skills and making acontribution.Give me enough help, but not too much;I’ve got something to contribute too. 7 Steps to being in Control

30The 7 Stepsto beingin Control1. Set Personalised Budget2. Plan support 3. Agree the plan4. Manage individual budget 5. Organise support6. Live life7. Review and learnA report on in Control’s first phase 2003-2005

31The next section looks at the7 steps in detail1. Set Personalised BudgetAn individual’s first step to Self-Directed Support is finding out how muchfunding they will be entitled to. This amount forms the individual’s PersonalisedBudget. in Control has demonstrated how people can discover thisinformation at the beginning of the process and can even assess their likelyentitlement themselves.At present, of course, few people ever find out how much money is spent ontheir support. People rarely have the opportunity to determine what supportthey receive. The current process of assessment can take months.Such practice can, at least in some parts, be changed relatively easily. Caremanagers already know what level of funding is reasonable for particularlevels of need. By describing present practice and gathering informationabout current spending patterns, local authorities are able to turn animplicit resource allocation process into an explicit one – a process that canbe shared directly with disabled people.2. Plan SupportOnce someone knows how much money they are entitled to receive theycan plan the help they want. Many people can do this planning on theirown – either by making a plan in their own style or by using in Control’sready-made guide, In the Driving Seat.Whenever possible planning should be done by the person and the closeallies they choose to help – usually family and friends. Not everyone hasfamily and friends who are able to help in this way. So, in Control suggestsat least four other kinds of help that should be available:FIGURE 11Support BrokersSupport ProvidersCare ManagersPeople in theCommunityHelp from an independent source - someone who is notinvolved in either commissioning or providing support.Help from a support provider that the person trusts.Some may still need help from care managers. If care managersare released from carrying out assessments and from arrangingsupport for those able to do it for themselves, they will be freeto focus on those who need their specialist skills.Brokerage consists of a set of functions which are not thepreserve of professional brokers. Individuals, family members,and community organisations might also organise and managesupport. 7 Steps to being in Control

323. Agree PlanOnce a person has completed their support plan they will need to checkwhether the social services department agrees with it. Funding will only bereceived if it is clear that the person, or someone else on their behalf, canmanage the money effectively and in a way which makes the person’s lifebetter.Self-Directed Support should not leave anyone worse off, in dire need, orsubject to abuse. So it is important that social services departments sign offsupport plans. in Control recommends the following measures of a goodsupport plan.In summary, a support plan should be:FIGURE 12Person-centredClearPracticalSafeSelf-determinedManagedIn budgetIt must suit the person and fit their preferred lifestyle.The person must set clear and meaningful outcomes to achieve.The person should know how they will achieve these outcomes.The person should make sure they and others are not put unnecessarilyat risk.The person should be in as much control of decisions as possible.There should be clear systems of management and responsibility.The person must not spend more than the agreed amount.In practice, in Control has found that the quality of support-planning ledby disabled people, their family or friends is often very high because it isbased on real and detailed knowledge of the person and their community– knowledge that may not be available to a professional handling many differentcases.At this stage there is a significant question for the local authority: howcan the authority be confident that disabled people – especially those withcognitive impairments – understand and can take responsibility for theirown plans? in Control has responded by providing a policy framework forsupported decision-making and demonstrated how the use of an agent couldensure that Self-Directed Support can work for everyone, regardless of theircognitive capacity. Agency is explored further in the next chapter.A report on in Control’s first phase 2003-2005

334. Manage Personalised BudgetOnce the plan is agreed, the Personalised Budget has to be converted intomoney in a form that can be managed or overseen by the person or theirrepresentative. The person has to manage the money according to rulesagreed with the social services department.in Control has identified the following ways in which a PersonalisedBudget can be managed:FIGURE 13Disabled personRepresentativeTrustBrokerService providerCare managerThe money is managed by the disabled person.The money goes to a representative, who agrees to manage onthe person’s behalf. (This may or may not be the Agent, the personwho agrees the contract with the local authority. Sometimesan Agent may want another person to actually manage the funding.)A Trust is set up to act for the disabled person. The social servicesdepartment then contracts directly with the Trust and transfersfunding into the Trust’s bank account.Some may want to pay an individual or an organisation to act astheir broker. The broker controls the money on their behalf andcan organise and coordinate the services that they want.Some people may want their Personalised Budget to go directlyto their service provider who can manage the money through anIndividual Service Fund. In this arrangement, the funding is ‘restricted’and must be spent on behalf of the disabled person. Anymanagement fees must be set out and agreed in advance.The care manager acts for the person by planning and organisingservices for the individual in the same way that they act in the currentsystem.Though some of these arrangements are more familiar than others, all ofthem are already used to some extent by local authorities. 7 Steps to being in Control

345. Organise SupportHow someone organises their support is linked to the degree of control theydecide to take over their funding. They may decide to buy services fromservice providers and leave a lot of the details in arranging the support tothe provider. The person can remain in control and is able to change theservice if desired. However, if local services seem unsuitable or if the persondecides to get more involved in the details, a do-it-yourself option may beappropriate. Even if someone decides on a DIY approach in organising mostof their support, they might still want to buy in particular expertise.There are several areas where people may look for help:FIGURE 14Personnel ServicesFinance ServicesInsuranceManagementBrokerageHelp to recruit staff, arrange training or staff management; adviceon contracting and employment law and good practice.Help with payroll, keeping accounts and making financial reports.Cover for Public and Employer’s Liability or as a means of puttingaside money for emergencies or periods of higher need.Help to supervise, coordinate and organise personal assistance.Help to plan support, to find and recruit sources of support, andto change services when required.The question of who pays for this help is an important one. in Controlargues that the Personalised Budget should consist of the whole amount ofmoney to which someone is entitled. From this amount people would thenpay for any of the management or organisational support they need. Somelocal authorities may be accustomed to contracting with local organisationsto provide such support for people who have a Direct Payment. While thisapproach may work well with relatively small numbers of people directingtheir own support, it may be more difficult with greater numbers. It couldreduce the autonomy and choice of the disabled person and also restrict thedevelopment of a diverse market in this kind of support.6. Live lifeUndoubtedly the most important part of the process is living life. Supportis a vehicle to this goal. The objective in transforming the system of socialcare is that disabled people will take their place as citizens.It is especially important that someone can use a Personalised Budget in aflexible way, with as few restrictions as possible. Flexible use of funding willproduce support that suits the person, brings greater value and producesmore satisfying outcomes. In this new way of commissioning, support maybe paid for but could also be free, or traded in exchange for something providedby the disabled person.A report on in Control’s first phase 2003-2005

35The following are some of the support arrangements available to peoplewith Personalised Budgets:FIGURE 15Personal assistanceCommunity supportLive-in supportCommunity inclusionHousingWorkEquipmentSkillsSomeone is paid to work just for the person, able to helpthe person at home or in the community in a way that suitsthem.Friends, family and neighbours can offer many kinds of support.Someone can also pay expenses or other legal ‘rewards’to people who support them to participate in communityactivities.Someone who lives with the person and also offers help.Money can be used to join in community groups, pay membershipfees or pay for support to take part.People often want to move house or make changes to theirhome so that it suits them and the people they want to livewith better.People can use their money to find a job and get supportwhile they are at work.Equipment to help someone do what they want to do - perhaps,specialist equipment or the tools of a trade the personis pursuing.Money can be used to learn new skills and increase independence.Reducing the need for help in one area of someone’slife releases money that can be diverted to another area – ineffect a process of personal development.7. Review and LearnThe final step within in Control’s model of Self-Directed Support is that ofreviewing what has been achieved.This is important for several reasons:✳ there is a need to check whether things are going well and makeadjustments where needed.✳ there is an obligation to the wider community that paid its taxes.Communities have the right to expect that their money is well spent – in thiscase, on good support. However, this does not imply the rigid execution oforiginal support plans for the sake of being accountable to the community.✳ the person needs to review what they have learnt so that they can sharetheir experience with other disabled people. 7 Steps to being in Control

36Testing the 7 stepsThis system of Self-Directed Support was developed and refined in practicein the six pilot sites. The following chapters set out what was learned fromusing the system.In particular, outcomes are presented from an evaluation based around sixkeys to citizenship: self-determination, direction, money, home, support,community life. 2Barbara’s storyBarbara’s sister found that Barbara beingin control made a big difference tothe whole family.On the death of my mother 10 yearsago my sister Barbara, who has DownsSyndrome, moved in with me and Ibecame her carer. Barbara was capableof looking after her personal and everydayneeds by herself.She happily attended a day centre inNorth West London – something mymother would never let her do. Shemade friends and seemed extremelycontent with life. We were also membersof the Special Needs Club attachedto our parish and would go onoutings and meals with them.Six years ago I retired to Southwickin West Sussex and managed to getBarbara into Glebelands Day Centrefor three days per week which gaveme some spare time to myself. Whilstat Glebelands Barbara received twocertificates for Basic Learning Skills.About 3 years ago Barbara startedshowing some changes in her behaviour.She would covet and hide thingsthat were not hers. Post would gomissing. This was the onset of herdementia. Even with the dementiashe continued to attend the daycentre 3 days per week. She enjoyedthe company, cooking, needleworkand art.In June 2004, just around her 60thbirthday, Barbara was no longer willingto get on the community bus to goto Glebelands, did not want to use thetoilet and refused to do other thingsthat she would normally do – like goingout. I started to take Barbara tothe centre in the car. When I collectedher in the afternoons I found her miserableand detached from the crowd- where normally she would be in themidst of it all!Having Barbara home all day everyday became very restricting for meand to be honest I felt that I wouldnot be able to cope with her and normalfamily life with my children andgrandchildren.With the help of my social workerBarbara not only got the attention ofa very good occupational therapist,who visited weekly and started projectswith her that we and her carers,are continuing today. I was also givena few hours per week respite whichhelped me to charge my batteries. Myhours were increased to 7 per week– again a little extra freedom but notnearly enough when the task in handis so very demanding.Then came in Control. I was advisedend August early September 2004 thatI was to receive a budget of 23,500per year. In order to get this money Ineeded to write an in-depth SupportPlan stating exactly who Barbara was,what her needs were and how I wasgoing to use the money. This SupportPlan is being updated so that eachA report on in Control’s first phase 2003-2005

37new carer knows exactly what Barbaraneeds as she is unable to tell themherself.Since in Control has started I have afew hours off each day. I am a farhappier person and I feel that becauseI am more relaxed in general, myattitude to caring is a far better onethan a few months ago when I beganto resent everything I did for mysister. I will also have the ability andfreedom to have a few extra hours offonce the school holidays come aroundand be able to spend time with mygrandchildren – something I could notdo before in Control.I have covered the additional careinitially by using an agency and theAlzheimers Society. To get extra hoursI shall, in due course, be employing fulltime carers. in Control gives one thechance to use various options.The recording of the budget, bothincome and expenditure, is very easy,with returns to be made to West Sussexon a monthly basis.Endnotes1 The six sites were: Essex, Gateshead, Redcar and Cleveland, South Gloucestershire, West Sussex, and Wigan.2 Simon Duffy, Keys to Citizenship, Paradigm, 2001. 7 Steps to being in Control

39C h a p t e rEvaluation –self-determination

41Chapter 4Evaluation – self-determinationSummaryAn evaluation of outcomes for people in the six pilot sites 1 was carried outby Professor Chris Hatton of the University of Lancaster. For full details ofthe evaluation outcomes see Appendix 1.In the first of six domains (or keys to citizenship 2 ) – self-determination- in Control found that, when appropriate systems of supported decisionmakingwere used, it was possible for people, including those with profounddisabilities, to be more in control of their lives. The number of peoplesatisfied with the level of control they had over their lives increased from42% prior to being involved with in Control to 97% after gaining controlover their support.The evaluationThe ultimate test of the in Control model is whether it delivers sociallysignificant changes in the lives of the people using it.As well as inviting people to tell their stories and gathering information atstakeholder events, in Control asked that people directing their own supportwere interviewed (along with other important people in their lives) attwo time points - before and after taking part in in Control (Time 1 andTime 2).The before and after questionnaires were designed by the in Control team.The before questionnaires were used to capture important aspects of people’slives according to six keys to citizenship at the first time point:✳ self-determination✳ support✳ home✳ direction✳ money✳ community life.The after questionnaires were used to find out what (if anything) hadchanged about people’s lives since the introduction of in Control.In total, 31 people completed the questionnaires Evaluation – self-determination

42The outcomesin Control set out to implement a new system and learn from the experience,rather than formally to evaluate an ‘intervention’. In terms of traditionalresearch design, this means that we have to be cautious about interpretingthe questionnaire results, particularly in terms of assuming that the inControl pilot project caused the changes reported here. It is also importantto note that information was collected from 31 people – not all of thosethat participated. Therefore, we cannot be certain that we would see thesame changes if information could have been gathered from everyone whoparticipated in the project. Having taken these cautions into account, wecan say that the in Control pilot project has been associated with importantimprovements in people’s lives. What is more, improvements in relation toevery key to citizenship were reported less than a year after the introductionof in Control.Findings in the first area – self-determination – are included below. Findingsfor the other five key areas are presented in the chapters that follow.Self-determinationPositive changes were found in several areas associated with personal controlin life – self-determination.The number of people taking important decisions over their lives doubled.At Time 1, for example, only 3 people had chosen their own staff. By Time2 this had increased to 13.FIGURE 16Do you make make important decisions decisions in your life? inyour life?BeforeAfterA report on in Control’s first phase 2003-2005

43There was also a change in the person seen as the major decision-maker. Attime 2, the number of professionals seen as the major decision-maker in aperson’s life had reduced by over 50% (from 11 to 5).FIGURE 17Who Who is the is the major major decision-maker in your in life? your life?BeforeAfterSatisfaction levels increased. At Time 1, most people were unhappy withthe level of control they had over their lives (7 really unhappy; 11 unhappy;13 quite happy; no-one really happy). This had strongly improved by Time2, when almost everyone was reported to be happy with the level of controlover their lives (no-one really unhappy; 1 person unhappy; 13 quite happy;17 really happy).FIGURE 18Are you happy with the control you have over your life?BeforeAfter Evaluation – self-determination

44Supported decision-makingThese positive changes are perhaps most significant because they wereachieved by people with a wide range of support needs – including thosewith profound disabilities. Findings from the in Control pilots provide strongevidence that Self-Directed Support is feasible and desirable for everyonewho uses social care support – including those who may not communicatewith words, those who experience dementia or serious mental health problems,and those who have difficulty in understanding complex ideas.When people have such impairments, it will not always be possible for alocal authority to have confidence that the person understands their ownplan. Local authorities will need to work extra hard both to help peopleunderstand and, where necessary, to appoint an Agent who can representthe person when the support plan is being agreed.The use of Agents is a vital part of Self-Directed Support. Even if someonecannot wholly direct their own support it is still possible to make sure thatdecisions are made as close to the person as possible and that they are madein the person’s best interests.An Agent is responsible for acting in the person’s best interests and agreeinga support plan with the local authority. So an Agent must meet specificcriteria. A good Agent will know the person well, have a real commitmentto them, and will be available to help with big decisions. Often Agents willbe friends or family. Sometimes they will be professionals.West Sussex County Council developed a protocol to help care managersmake judgements about who would be appropriate Agents. The process ofdeveloping this protocol was demanding in that it involved officers from anumber of departments in considerations that raised anxieties around theCouncil’s duty of care.Nonetheless, an agreement was made and the protocol put into action. Thisprotocol and more information on supported decision-making is availableon the ‘How to be in Control’ page on www.in-control.org.uk.Who is best placed to manage support?The viability of supported decision-making as a means of including all thoseusing social care is reinforced by the outcomes of an exercise carried outwith a group of care managers from Lancashire, Gateshead, Wigan, Redcarand Cleveland and a number of London BoroughsThey were asked to think about their actual caseloads and say who theythought would be the most appropriate manager or coordinator of the supportservice to the individual. They gave the following information:A report on in Control’s first phase 2003-2005

45FIGURE 19Appropriate Manager?Who is the most appropriate manager?Data from Lancashire, Gateshead, Wigan, Redcar & Cleveland and London BoroughsThese care managers believed that, in only 120 out of 774 actual cases, theywere the most appropriate manager of someone’s support. The biggest singlegroup deemed most appropriate, in these care managers’ view, were the familyand friends of the person.Control of fundingA strong indicator of self-determination is control over finances. At Time2, more people had greater control over their money – 26% more had bankaccounts (and a number of those who already had accounts had openedadditional accounts).The principles of supported decision-making described above must applyalso to control of finances. Direct Payments have been a very importantmeans to greater control for disabled people. However, other means of managingfinances needed to be identified in order to ensure that everyone canhave a Personalised Budget – including those who are not able to take onthe full responsibility of managing the funds.The available means – Direct Payments, Indirect Payments, Trust, Provider,Broker, Care Manager – are described in the previous chapter. Evaluation – self-determination

46Celia’storyA social worker tells Celia’s storyCelia was diagnosed with Asperger’sSyndrome at the age of 15 but shereceived very little help from children’sservices. She is now 20.Celia was originally in residential school.But things weren’t going well. Therewere no night staff and Celia roamedthe building, knocking on others’ doors,bullying and attacking other students.She was very unhappy. She was not understood.Her needs were not met.In 2004 she was given notice becauseof her behaviour. I made an emergencyplacement at an in-house residentialcare home but Celia continued to bullyother residents.She did not like to be seen as someonewith a learning disability or live withdisabled people. Sometimes she attackedstaff. She also started to showsigns of bulimia. She was controlling.She was obsessive about bathrooms andabout others’ behaviour.Eventually things became so bad thatshe was given notice to quit – her secondtime. Her parents found a ‘specialist’residential care home for peoplewith autism. I had reservations, butthere was no suitable alternative and soshe moved in.It was a 4-bed house in the community.It was registered and linked to the mainresidential home. Food and day carewere provided centrally. To all intentsand purposes it was just another institution.Not surprisingly, Celia hated it. Thoughshe had constant 1:1 support, she nevereven went out to local shops. Her behaviourdeteriorated. She was desperateto visit her parents every weekendand took every opportunity to go outand leave the house.This ‘specialist’ home was soon callingme in for talks about Celia’s behaviour.I felt sure that another notice to quitewasn’t far away.Celia’s mum was talking to me over acoffee one day after yet another difficultmeeting when she said, ‘I am verydissatisfied with what is being provided.It’s a waste of money. It’s doing her nogood at all. If you gave me the moneyI would do it myself. ’She was awarethat there was a lot of work involved,but said ‘anything would be better thanwhat Celia gets now’. This is how Celiagot involved with in Control.I stressed that it was Celia who was tobe in control and not her parents. Therewas help available with things like employmentadvice and payroll from thelocal Centre for Independent Living. Imade a referral to Circles of Support tomake sure Celia was fully involved.Celia wanted to live in her own placein the town centre. Shared ownershipwas considered but, in the end, Celia’sparents put down a deposit on a flat.As soon as the residential home heardCelia was thinking of in Control, theygave her 3 months notice!The flat was bought and an advocateworked hard with Celia to write asupport plan. Celia got an allocationof £60k a year. This was much morecost-effective than the specialist home,which was about £ 100k. But would thenew arrangement work?Celia’s parents arranged housing benefit,DLA and recruited a team to supportCelia. They decorated the flat with Celiaand got everything in place for her tomove in during July 2005.On her second day in her own place, Celiatold her support worker she wantedto go to a local open-air pop concert.On her third day she went out for a pubA report on in Control’s first phase 2003-2005

47lunch in the country and watched thesun set.Since that time she has done, for thefirst time, an incredible number ofday-to-day things that we all take forgranted. Her parents went away lastOctober for their wedding anniversaryfor the first time in 5 years. I just heardthey have had the best Christmas inrecent memory.Celia is very happy in her flat. She lovesher life and, although she still presentschallenges to others fairly regularly, injust a year her life has improved out ofall recognition.She has a dedicated staff team andkeeps them all busy. Mum says runningthe support is almost a full time job butit’s all much less stressful than life was ayear ago.Endnotes1 The six sites were: Essex, Gateshead, Redcar and Cleveland, South Gloucestershire, West Sussex, and Wigan.2 The six keys to citizenship are taken from Simon Duffy’s book: Keys to Citizenship, Paradigm, 2001. Evaluation – self-determination

49C h a p t e rEvaluation– direction

51Chapter 5Evaluation – directionSummaryControl over decision-making, as presented in the last chapter, only becomesreally useful when it is coupled to the making of a plan. The plan sets outthe steps in the direction the person wants their life to take.Some people need help to plan and organise their support. However, therecan be a tendency to underestimate what individuals and families can do forthemselves. In most of the pilot sites a very little extra money was invested inbrokerage yet there was a high success rate for those wanting to make changesin their lives: 79% of desired changes were achieved in less than a year.Those satisfied with their plans and direction increased from 61% of thegroup before involvement with in Control to 90% when they had controlover their support.Moving in the right directionEven in the short period between the before and after questionnaires (Time1 and Time 2) – less than a year – people achieved a high percentage of thechanges they wanted.The vehicle for these changes was the support plan. At Time 1 less than halfof people (12) had a plan; by Time 2 this number had increased to almostall the people (27)FIGURE 20Desired change Number desiring change Achieved the changeWhere I live 17 76%Who I live with 16 81%What I do with my time 26 69%Who supports me 18 89%Other specific changes 10 90%Satisfaction with plans rose accordingly. At Time 1, a third of people wereunhappy with their plans. By Time 2, only one person was unhappy withtheir plan.5 Evaluation – direction

52FIGURE 21Are you happy with your plans?Are you happy with your plans?BeforeAfterWho can plan?In the current care management system it is the care manager who plans.However, any assumption that care managers are strongly attached to theprocess of assessment and care planning for everyone on their caseload isquestioned by an exercise carried out with care managers from a number ofauthorities.These care managers judged that they would be the best person to planin only 17% of their combined 801 cases. Individuals and their familieswere considered to be the best placed to plan in 57% of these cases. Thisconfidence in individuals and families appears to be well placed when weexamine plans produced during the pilots.FIGURE 22Who is the best planner?BeforeAfterA report on in Control’s first phase 2003-2005

53Slides from Gavin Croft’simaginatively presented planView Gavin’s plan at: http://www.picturethispartnership.org.uk/examples%20of%20our%20work.htm5 Evaluation – direction

54Slides from Gavin Croft’simaginatively presented planView Gavin’s plan at: http://www.picturethispartnership.org.uk/examples%20of%20our%20work.htmA report on in Control’s first phase 2003-2005

55There were diverse approaches to planning. One approach took existingperson-centred plans as the starting point. Another approach created a newplan using a person-centred planning style.In Redcar and Cleveland, a team of person-centred planning facilitators,working in partnership, with care managers was the main vehicle for supportplanning.Elsewhere, families played a leading role in supporting people to plan.Training for people to develop support plansWhile families were often willing to support relatives in creating their plan,some wanted help in doing this work. in Control’s response in West Sussexand South Gloucestershire was to offer training to people, families andfacilitators.Sheila, a 78-year old parent of a disabled man commented that she hadfaced many obstacles in trying to get the best for her son. In contrast, playinga leading role in the planning process was ‘like a light being switchedon’.In South Gloucestershire training was provided for self advocates and theirsupporters to do their own plans. This approach has now been developedinto a process called Planning Live!, in which disabled people get togetherover a couple of days to develop their support plans.Donna attended training days held in a community hall in Bristol at theweekend. She says she was nervous at first when thinking about plans forthe future. But as she went along she felt much more confident in makingdecisions.The conclusion from adopting a number of planning training approacheswas that supporting people in groups to develop real plans was more productivethan providing training in the abstract.One clear request made during the process was for a planning workbook. inControl responded with an easy-English guide to planning: In the DrivingSeat. A companion guide for supporters, Top Tips, was also produced.Both are available on the in Control website: www.in-control.org.uk.The development of brokerageThough many people will want to make their own plans – perhaps withthe help of family and friends – there will be a significant number who willbenefit from the help provided by support brokers. These are independent5 Evaluation – direction

56professionals who could help with planning and who are not involved inproviding support or in rationing resources.As the Commission for Social Care Inspection suggests in its discussionpaper on Support Brokerage:Brokerage models have much to commend them, as they canbe flexible and delivered in a number of ways to suit individuals’particular situations, in a similar way as independentfinancial advisors tailor packages to meet individuals’ financialcircumstances.A number of models were tested within the in Control pilots.While Wigan in Control was based largely on families carrying out the brokeragefunctions, Essex and South Gloucestershire tried different approachesto professional brokerage.In South Gloucestershire people started their support plans and then chosea broker to help them implement the plan. An advertisement for brokerswas put in the local paper which received seven responses. Five people wenton to train as brokers.In Essex, everyone involved in in Control had a broker. Essex gave brokersspecific training in a range of skills, including negotiation and mediation.The project created a useful structure which broke down and costed outbroker functions c .Gateshead and West Sussex both involved the local Centre for IndependentLiving (CIL). In Gateshead, the CIL offered peer support to an in-housebroker. In West-Sussex, the CIL was grant-funded to work with peopleinvolved in the pilots.Each of these models had its own advantages. These experiments suggestthat it was unlikely that any one model would suit all people. Certainly, thecreation of a monopoly brokerage agency within an authority would notstimulate diverse and flexible responses to individual needs and wishes. Sucha monopoly would also not lead to value for money. in Control thereforerecommends that authorities foster the development of diverse brokeragearrangements.The experience of families in Wigan underlines that it is more accurate tothink of ‘brokerage’ rather than ‘brokers’. The activities included withinthe term ‘brokerage’ are not the exclusive preserve of professional brokers.Brokerage is a set of functions that includes planning, organising and managingsupport. These functions can be carried out by non-professionals. Inmany cases, brokerage will be more effectively carried out by individuals,families and friends. Brokerage provided by members of the community has,of course, the advantage of being free to the individual.A report on in Control’s first phase 2003-2005

57Defining brokerage too narrowly could also lead to the exclusion of existingprofessional brokerage activities that are not currently labelled as brokerage.For example, support agencies that facilitate community connections as acentral part of their support might already be carrying out brokerage functionswithout actually naming them as such. These organisations alreadyhelp large numbers of people to get the lives they want in the community,but do not refer to their support as ‘brokerage’. KeyRing (an innovative supportedliving agency) and some adult placement services are examples.It should also not be forgotten that support agencies may have a valuablerole to play in helping people with some brokerage functions, providingthat attention is paid to conflicts of interest arising from their role as providersof support.A new role for providersA support provider can also carry out brokerage functions. A provider willingto reframe its support so that it offers individual tailor-made help underthe person’s control will be an important ingredient in the new system.There are precedents. Providers like Inclusion Glasgow, Partners for Inclusionand others have shown that a radically person-centred approach tosupport is feasible and sustainable. These organisations hold people’s IndividualService Funds on their behalf and work with the person to designwholly tailor-made supports. The money and the support staff are the person’sown. The money is kept in a restricted account and, apart from clearmanagement charges, does not become merged with the organisation’sgeneral accounts. Support staff are recruited just for the person and, if theperson no longer wants a staff member to work with them, that staff memberreceives help to find another job.A number of organisations in England are responding to this challenge andare developing their services in anticipation of a more consumer-drivenmarket. While these organisations take on the challenge of turning aroundestablished working patterns and organisational culture, there may be a casethat social services commissioners should support the development of neworganisations. New support providers – led by experienced and entrepreneurialindividuals that are founded in strong person-centred values – couldbe lighter on their feet in responding to immediate demands for tailor-madesupport.A changed role for care managersSelf-Directed Support can offer positive change for care managers. Theymaintain a duty of care and represent the local authority in the contractwith the disabled person. They still need to agree support plans and takepart in the review. However, if disabled people make their own assessmentsaccording to an open and public Resource Allocation System – and if those5 Evaluation – direction

58people write their own support plans and organise their own support – caremanagers will be released to do other things.They will be able to focus energy on working with people in complex situations.They can tackle high-cost, out-of-authority placements. In this workthey can use the core social work skills in which they are trained. One caremanager commenting on the current system, put the problem succinctly: ‘Ididn’t come into social work to fill out forms’.Kenny’s StoryHow Kenny moved from aninstitution 200 miles away to hisown flat.Ken is thrilled. In July at last, he movedout of the institution. He moved theresix months ago after spending threeyears at another institution in Devon. Itwas supposed to be a temporary stay.Ken’s friend and advocate, Tony, describeshow he moved to the institutionuntil a place in Essex, his home county,could be found.They had known each other for manyyears. Ken was going to move into hisown flat in 2002 but, the day before hewas due to go there, the staff at theassessment unit he was living in hadbeen instructed not to work with him.So Tony and Ken stayed together in theflat for a week before moving to theestablishment in Devon as this was theonly place the social worker could findfor Ken.Whilst he was living in Devon, Ken saidhe was not allowed to go to the toiletalone. He had to ask for toilet paper andwasn’t allowed things like razors, batteries,bottles and beakers at night. ‘If I wasdry I could not get a drink’, he says.The light switch to his room was outsidethe door, but staff said that Ken couldturn it on or off whenever he liked! Norcould Ken go out with out an escort. Itwould seem that going out was a rareevent. When he needed new clothes forhis move to Essex, a staff member wentto buy them for him as there were notenough staff to take him. His care at theIt would seem that Kenny has had alife of being moved around withouthaving any control over where or whenhe went. Ken is now forty three. Hehas been in just about every hospitalin East Anglia. He had his first experienceof the long stay hospital systemwhen he was 15. He also says he waskept in hospital on a section under theMental Health Act. It is true that Kenhas lost his temper with staff in thehospitals he has lived in. But in all theyears that Tony has known him, he hasnever done anything like that outsidethe hospital.A report on in Control’s first phase 2003-2005

59institution cost almost £3000 per week.To stay in the Savoy Hotel for a weekcosts £2800!Ken’s mood becomes sad when hedescribes the ‘Odd’s Room’. It was reallythe observation room, but Ken misheardit and thought you went therewhen you were behaving ‘odd’. This, heexplains, is where he had to go if he hada disagreement with staff. It is an emptyroom with one chair in it. Most peoplewho had to endure these circumstanceswould probably be inclined to lose theirtemper.It was Tony who came up with the ideaof Ken being part of the in Control project,with a view to moving to supportedliving and a place of his own. Everyonethey spoke to said that this was a greatidea. But where would the £3000 a weekcome from for Ken to move into his ownplace? Anxiety amongst staff mounted.They had never done this before. Itwould all take time to sort out. Meantime,Kenny was desperately unhappywhere he was living. He longed to moveto Essex.So it was decided to do a half-way plan.When Ken was on holiday in a cottagewith Tony in Essex, he invited Nicola fora cup of tea. Nicola is a social worker.She read the report about Ken butcouldn’t match what she had read withthe person she saw in front of her. Shewas undeterred by the report and startedlooking for somewhere suitable inEssex. This is how Ken came to be wherehe is now – in his flat, able to organisehis life as he chooses.Endnotes1 The six sites were: Essex, Gateshead, Redcar and Cleveland, South Gloucestershire, West Sussex, and Wigan.2 Commission for Social Care Inspection, Support Brokerage, March 20063 For more detail see papers from the Essex Support Brokerage Project on the in Control website: www.in-control.org.uk5 Evaluation – direction

61C h a p t e rEvaluation– money

63Chapter 6Evaluation – moneySummaryThe work in the pilot sites 1 demonstrated that Self-Directed Support doesnot cost more than traditional services. in Control’s system is built on thefoundation of a fair and public Resource Allocation System.Where such a system was used, in Control found that the allocations couldbe made within existing resources. In the largest scale test of such a resourceallocation process, one authority carried out a desk exercise and found thatexpenditure was running 20% higher than the level at which PersonalisedBudgets would be set.Individuals’ satisfaction with their money increased. Before involvementwith in Control, 45% of people were happy with their money. Within a yearof getting control, 90% were happy.Personal money for supportWhen people were interviewed at the beginning of their involvement within Control (Time 1), over half said they were unhappy with how muchmoney they had. There was a strong improvement by the second interviewFIGURE 23Are you happy with your money?Are you happy with your money?BeforeAfter6 Evaluation – money

64(Time 2): 75% more people reported that they were happy with theirmoney.There was an increase in the number of people claiming Independent LivingFund (ILF) money – from none to six. There was also an increase in thenumber of people getting direct payments – from 1 to 16.It might be assumed that the increased take up of ILF supplemented thepersonal budget and is a hidden reason for the affordability of Self-DirectedSupport. However, individual allocations were not supplemented by additionalILF monies. Instead individual allocations were organised so as toinclude any ILF monies.At the outset in Control argued that, if individuals and their supportershad control over how they spent their money, they would be able to getbetter value for money than a local authority can through the purchase oftraditional services.It is probable that good value was achieved because people spending theirown support money had a vested interest in getting the most favourablesupport arrangements – at advantageous prices, at a time that suited themand delivered by people who they know and trust.However, one important disincentive was identified. At present the differentfunding streams are not coordinated - each imposes different andoverlapping burdens on the disabled person or their family. For instance,one family in West Sussex withdrew from the project because of the burdensof accounting to two different funding bodies - the ILF and West SussexCounty Council. This example highlights the urgency for the resolution ofsuch issues at national level.Developing a Resource Allocation SystemBecause individuals have a strong incentive to ensure value for their supportmoney, in Control set out to develop a system which could build on thisvested interest. The Resource Allocation System (RAS) needed to offer themaximum control at the earliest possible stage. The system was designed tooffer openly, publicly and fairly an allocation of funding that was affordablewithin current authority budgets.in Control’s belief that allocations could be administered very quickly wassupported by many care managers. These officers noted that critical informationneeded to make a fair allocation of funding is often limited in scopeand can be gathered quickly – in contrast to what is now often a lengthyprocess. In an early exercise to test the robustness of the RAS, care managerswere asked to evaluate how well people on their present case load fittedinto the different categories of in Control’s RAS Version Two.A report on in Control’s first phase 2003-2005

65In this version, each level of funding corresponded to a particular set ofbroadly defined needs. The whole system was defined within two pages.Over 90% of people seemed to fit easily into the pre-defined categories. Lessthan 2% did not seem to fit at all.FIGURE 24Level Easy Fit Marginal No Fit1 12 N/A2 18 13 13 24 16 425 33 26 13 0TOTAL 116Care managers’ views on whether people fit in Control’s Resource Allocation System (Version Two).Improving the Life Chances of Disabled People 2 set a target for a nationalroll out of Individualised Budgets by 2012 (subject to the evaluation of the13 Individual Budget Pilot Projects started in January 2005).One of in Control’s major contributions to the meeting of that target will bethe development of its Resource Allocation System (RAS). There are nowthree versions of the RAS. All are being successfully implemented by localauthorities around England. The latest version offers a potential nationalframework for resource allocation and is applicable to both working ageadults and older people.This version is based on self-assessment. The disabled person fills out aquestionnaire which assesses the impact of someone’s disability on their life.Their answers generate a points total which is multiplied by a local ‘pricepoint’. The amount of a price point is worked out by the local authority in adesk exercise to identify current spending in a sample of 100 real cases. Thetotal current spending is reduced according to a formula. It should, though,be emphasised that the RAS is not designed as a tool for cutting costs. Itcan be managed through the RAS so as to offer a means of offering an equitableand transparent share of available resources while taking account ofinefficiencies in current spending and acknowledging the greater value formoney which individuals can achieve. The example below shows the outcomeof recent price point exercises in several local authorities.6 Evaluation – money

66Profile of needsThe example below shows profiles of need generated in desk exercises in threeLondon boroughs. In each of these exercises, care managers applied the RASto people on their caseload. Each borough carried out the exercise with asample of 50 cases. It is notable that the profiles are remarkably similar.FIGURE 2570Profile of Needs across3 London Boroughs60RAS Points allocation Needs504030201001 11 21 31 41PeopleBorough 1 Borough 2 Borough 3Profile of needs across 150 cases – 50 in each of 3 London boroughs.Looking in detail at one borough’s current spend compared to the patternproduced when the RAS is applied, stark differences in spending emerge.FIGURE 26£140,000£120,000RASCurrent Spend£100,000Money£80,000£60,000£40,000£20,000£01 11 21 31 41 51 61PeoplePossible resource allocation compared to current spend in one London borough.In this chart, the current cost can be seen to vary chaotically. Current spendingappears to have little correlation with the profile of need identified in theA report on in Control’s first phase 2003-2005

67RAS exercise shown in the first chart. In each of eight cases on which morethan £60,000 is currently spent, the RAS indicates a lower needs profile and,therefore, a significantly lower allocation. Conversely, a number of cases currentlyreceiving amounts below £5,000 would receive more if the RAS wereapplied. On the other hand, because of the RAS’s inherent rationale, thereis a consistent and clear correlation between each RAS allocation and theindividual’s needs.The redistribution of funding made possible by a rational RAS is not intendedas a cost-cutting exercise. In the example above, there would actually bemore people who gain money for support than those whose allocation isreduced. The latter do not ‘lose’ funding. The evidence presented throughoutthis report shows that high cost support purchased by local authoritiesdoes not guarantee a good quality of life for the person receiving the support.Most services are not tailor-made and a significant proportion of thecosts are taken up with management charges levied by the support provider.Individuals and their supporters are shown to be capable of getting bettervalue for money and achieving a more satisfying quality of life.In the first phase of work the RAS was set to correlate with current patternsof allocations. However, in Control consistently found that this still led toefficiencies. (See the table of figures below from 5 other authorities). Theseearly savings were primarily created by cutting out expensive outlying casesbut also by eliminating the natural tendency of current block provision toover-provide services to people even at the lower levels of need.FIGURE 27AuthoritySum of allocationsbefore in Control (£)Sum of personalisedbudgets (£)Difference(%)1 600,000 525,000 122 (desk exercise) 5,625,000 4,500,000 203 (in cases where therewas a difference)194,000` 107,000 454 187,305 152,300 195 594,000 397,000 33Efficiencies produced by the application of the Resource Allocation System in 5 authorities.Value for moneyin Control’s intention is to develop a fair, open and equitable system forallocating resources within existing expenditure limits.Finance departments might, not unreasonably, cast a sceptical eye over sucha radical reform of the current allocation system. Does the change hide anypotential for increased costs?6 Evaluation – money

68John Dixon (Director of Social Services in West Sussex County Council,and Co-Chair of the Disabilities Committee for the Association of Directorsof Social Services) addresses this question:For those who are anxious about the impact of individual budgets onfinances - which could include the Treasury - the good news from the smallscale but very similar experiences of the in Control pilots is that they donot have to break the bank. In West Sussex, none of the in Control carepackages came in at more than previous authority arrangements, andmany cost significantly less, despite being bespoke for individuals and theircarers. But they, like Direct Payments packages, produced a quite differentand generally non-standard pattern of services. This creates a challenge forcommissioners and providers alike. 3Though in Control’s primary motive is not to save local authorities money,it does recommend that authorities use the RAS to identify areas of spendingwhich represent poor value for money. It is not uncommon for localauthorities to spend £100k a year on specialist placements – see the chartsabove. £500k a year for one person is not unknown. This high level ofexpenditure does not guarantee high quality of service. (For an example seeCelia’s story in Chapter 2).The chart below shows the extent of spending on traditional services withina typical metropolitan authority. Expenditure is locked into three maintypes of service provision, leaving relatively little for more individualisedservices.FIGURE 28Typical local authority expenditureExpenditure- learning disabilityEvidence that there is scope for achieving better value in using in Control’sRAS was provided in an exercise carried out by another local authority. Inapplying the RAS to all people in the authority using social care, the resultwas an improvement in efficiency of 20%. Funding that would be saved inthis way could then be made available to others.A report on in Control’s first phase 2003-2005

69Joe’s storyCaroline Tomlinson tells how herson now has a more ordinarylifestyle.Our first child, Joseph Robert Tomlinson,was born in October 1988.Like many families we started to makethe huge adjustments needed withthe demands that such a small personbrings. Our life was ordinary until 6months later when Joseph contractedmeningococcal meningitis.To cut a long story short, after numerousassessments and examinations itwas evident that Joseph had severedevelopmental delay and we entered aworld we never knew existed - ServiceLand.And so our journey changed. Wewere suddenly parachuted into a verystrange and scary place. In this worldof Service Land lots of other peoplebecame involved in our daily lives,constantly making recommendations todo this or do that. And all the time weseemed to have to ask for permissionjust to live an ordinary life.But our life was certainly not ordinary.To function as a family we needed lotsof support from other people, especiallywhen Joseph’s sister Rosie and hisbrother Jacob were born. Joseph, yousee, finds it really difficult to sit still. Hedoesn’t use words to communicate andhis body doesn’t always do the thingshe wants it to. In fact many peoplehave said he is “extremely challenging.”So, as a family, we have needed help.But the help we received was what Icall conveyor belt care. This means thatservices put in help at the most crucialparts of the day based on their assessmentof our needs. For example, homecare was provided by the Local Authorityto come into the home and assistwith getting Joe bathed, dressed andeating his breakfast. Then there wasmore help again at tea time.At first it worked okay. But as the serviceincreased because of Joe’s supportneeds we needed two people to assisthim. In the end it began to feel thatwe were being invaded every morningand every tea time by an army of homecare assistants. Due to rotas, rest daysand everything else, the number ofdifferent people coming through ourdoor had gone from two to over 40 insix months. This was totally unacceptablefor Joe and very intrusive for us asa family. But all the time we felt thatwe had to be eternally grateful for the‘gift’ of professional services – servicesthat didn’t really work.Not only did Joe’s home care not workbut he was also being sent to a schoolthat was over an hour’s drive away. Joewasn’t happy there and his connectionwith his community was getting weakerby the day. And it was all at a phenomenalcost to the Education Department.Joseph didn’t need specialist out of boroughsupport. He just needed peopleto listen to what he was trying to say inhis own unique way.So when we heard about in Control wejumped at the chance of being involved.We had felt over the years that6 Evaluation – money

70we were passive recipients of a servicesystem that intruded in our lives andconfused Joe. What he really neededwas a person-centred approach to hissupport. In other words it was designedfor Joe, by Joe - and the people whoknew him best. He also needed to berecognised as an equal citizen, someonewith rights who was entitled to his ownlife, someone who was prepared totake on some responsibilities too.We started to help ourselves by organisinga circle of friends for Joe. Basicallythe circle consisted of people wholoved and cared about Joe and otherpeople who were paid to be in his life.The social worker also came and usedits meetings as a starting point for hisassessment. At the circle meeting wediscussed Joe’s dreams and visions forthe future, what his skills and giftswere, a step-by-step approach to howhe was going to get there and who weneeded to involve.The social worker used the assessmentto give Joe an allocation of money fromSocial Services and we considered anumber of the other funding streamsthat might be available to Joe. In shortwe applied for funding from the IndependentLiving Fund and we maximisedJoe’s benefits. It is essential that theindividual maximises their benefitsbecause, in order to get a life, you needmoney to spend – a disposable income.This first phase of money enabled Joeto employ four Personal Assistants whowork on a rotational basis and enableJoe to access ordinary social and leisureopportunities. (We need four becausehe needs two people at any one time tosupport him).He now attends a gym, goes on thetreadmill and swims in the pool. So heuses an ordinary facility, meets newpeople, has some important exercisewhich helps him to sleep. We get anexcellent package from the local gym,Total Fitness - they allow any of his PAsto go with him. He visits a lot of theNational Trust Parks as he is interestedin history and likes to walk round thegardens. He loves fairs and fast rides.So Alton Towers is a great favourite, aswell as Blackpool. He also likes to ridehis bike, which is a specialised tandem.His PAs need the right range of skillsto support him in his varied life styleand we also need the flexibility fromthe PAs so that if we go away for aweekend the PAs can carry on workingtogether as a team and can stop overat our house to support Joe round theclock.The management for the staff worksrelatively easily. I do a monthly rota,the PAs fill in time sheets and they getpaid on a monthly basis. I have a localcompany of accountants doing thePAYE and it all works quite smoothly.We have insurance for the PAs and haveto deal with any staff managementissues, which so far has worked fine forus all. Over the past few weeks we havestarted to break down the fundingwithin the education system and haveenabled Joe to attend the local college.We have considered how he can be incontrol of all of his week.So, what do things look like now?He goes to college 4 days a week fundedby the Learning and Skills Council.He has his own PAs working with himwithin the college, and they are nowpaid by the college for this element oftheir work.No more taxis and escorts to get tocollege. Instead, he catches the bus likeother young people. His PA’s come tothe house and support him from hereto college. The walk to and from thebus stops sets him up for a calmer dayin college. This is funded by the LEA.After college he goes on to the gymwhich is funded from his original socialand leisure resource allocation from ILFand SSD.A report on in Control’s first phase 2003-2005

71On his fifth day - when he’s not in college- he does voluntary work. This hasonly just started and we are trying outa few different things. The support forthis is currently being paid for by theLEA until Social Services do a reassessment.His weekends and evenings are the sameas they were and support is paid for byILF and SSD.It sounds complicated but in the wholescheme of things it isn’t. In comparisonto the difficulties around the support inour lives before Joe was in control, it isso much better for the whole family. Joehas consistency with the people supportinghim through his whole week - peoplehe has chosen. The support is flexibleand works around what Joe needs to do.So if he has a dental appointment hejust fits it into his life – like the rest of us- instead of his Dad or I having to take ahalf day off work to travel over an houreach way to pick him up! There are alsomany times when Joe doesn’t have paidsupport and we are really happy as afamily to support him at this time. This isso much easier than before because hehas been active and has had a fulfillingday.So, how will it move on in the future?We are setting up a trust as Joe turns 18and the trust will manage the staff teamand will have the legal responsibility formanaging the finances. The trust willbe people who love and care about Joe,and it will be developed so it is sustainable,as we, his parents, get older.After all I never wanted to be his caremanager, his accountant or his directorof services. All I ever wanted to be isJoe’s mum, doing things that mums dofor their growing children – like doingthe washing! Bring it on!Endnotes1 The six sites were: Essex, Gateshead, Redcar and Cleveland, South Gloucestershire, West Sussex, and Wigan.2 Prime Minister’s Strategy Unit, Improving the Life Chances of Disabled People, 2005.3 John Dixon, Director of Social Services, Community Care, February 20066 Evaluation – money

73C h a p t e rEvaluation– home

75Chapter 7Evaluation – homeSummaryin Control found that disabled people seek the same kind of housing as therest of the community: ordinary tenancies, family living or home ownership.Within one year 100% of those in residential care at the beginning ofthe process chose to move to housing they preferred. These moves did notcost local authorities any more money than they were already spending.Satisfaction levels, as in all areas, rose significantly. 65% of people werehappy with their home situation before directing their support. 94% werehappy at the end of the evaluation period – just under a year.Moving to ordinary housingIn the space of less than a year, there were some significant changes inwhere people lived. For example, all those people living in residential care– 10 people – had moved to other kinds of accommodation.People shared their homes with fewer others – down from an average of 6.2other people to an average of 3.6. Four people lived alone at the time of thesecond interview.FIGURE 29Place Before AfterIn family home 14 15Registered care home 10 0Hospital units 4 4Own tenancy 1 10Adult placement 1 0Foster care 1 1Home ownership 0 1Average household 6.2 (2-12) 3.6 (1-8)Single living 0 4Where people lived before and after being in control.These changes produced a substantial increase in satisfaction levels. At thefirst interview (Time 1), 35% of people were unhappy with their homes. Bythe second interview (Time 2) only 6% remained unhappy. 74% of the 29who were happy about their home situation at Time 2 said they were ‘reallyhappy’.7 Evaluation – home

76FIGURE 30Are you happy with your home?Are you happy with your home?BeforeAfterThough all people originally in residential care moved to other types ofhousing and support, there was no evidence that a clear entitlement toindependent housing led to a similar move away from the family home. Infact there was a slight increase in the number living with family - one moreperson at Time 2 than at Time 1. There was also no evidence to suggest thatfamily members exerted any inappropriate influence on the disabled personto stay in the family home. Had any such influence been exerted we mightexpect to see this reflected in declining satisfaction levels. As noted already,though, satisfaction levels increased significantly.Housing strategyThe strong interest in independent housing – especially on the part of thoseliving in residential care - might have been anticipated. However, the wishfor ordinary housing situations took some of the pilot authorities by surprise.While these authorities hurried to catch up by exploring and promotingthe full range of housing options, individuals and their families pursuedtheir own solutions. For example, one man’s elderly mother independentlypursued many possibilities including queuing on a winter’s morning for theopening of a new sales office at a housing development.In the southern pilots there was some pessimism about the chances of individualsfinding suitable and affordable housing. Affordability is sometimesviewed as a southern problem. However, while house prices may be higherin parts of southern England with consequent greater pressure on socialhousing, good affordable housing is a national issue.Wigan, for example, has a good supply of rented housing, but needs £220mto bring this stock up to modern standards. 1 Newcastle’s housing strategynotes that entry level housing doubled in price between 2002 and 2005:A report on in Control’s first phase 2003-2005

77This means that for most Newcastle residents not on the housingladder, the majority of Newcastle property is no longer affordable. 2Despite such obstacles, solutions were found by those wanting their ownplace to live – in both the north and south. This experience points to aclear need for an early local housing strategy in the conversion to a systemof Self-Directed Support. A full range of housing options needs to beincluded in any such strategy. These options are set out by the independentorganisation, Housing Options, at www.housingoptions.org.uk. Thelist of options includes well-documented accounts of how people have usedbenefits to pay mortgage interest on properties they are buying either aloneor shared with others, including registered social landlords.One option that is currently somewhat underused involves the use of familyresources to buy a property for the disabled person. Perhaps this possibilityis relatively little used because many regard the provision of support andhousing as the responsibility of local authorities. In any event, for thosefamilies who have resources to use as a deposit on a purchase, this can bea direct and convenient solution. As related in Clive’s story below, thehouse can be rented to the disabled person by their relative. For a fullerexplanation of this option see Keys to Citizenship, Chapter Four. 3Clive’s storyClive’s main objective in directinghis support was to move from thegroup home to his own place.Clive lives in his own home in Bristol. Hefirst heard about in Control at a PeopleFirst meeting. He thought it sounded‘all right’.At that time, about two years ago, Clivewas living in a group home with sixother people. He didn’t like living there.The people he shared the home with oftenargued. This made the house quitenoisy. Once, he was hit with a snookercue by another resident. Other residentsoften used to ‘tell him off’. These werejust some of the problems that Clivefaced in the group home. He had togo into the office to talk to staff aboutthese problems. It used to make himvery nervous and the problems neverseemed to be sorted out.Clive needed to take quite a few tabletsfor health reasons. In the home, healways had someone watching himtake his tablets. Clive would say ‘I’mnot a baby, I’m an adult’ and the staffwould reply that they had to watch himto make sure he took his tablets. Thismade him feel angry.7 Evaluation – home

78He had to go to bed at 10pm duringthe week and at 11pm at weekends. Hewasn’t happy about being told when togo to bed. In fact, all in all, Clive was‘fed up’ with where he was living, whohe had to live with and the support hereceived from staff. He was sharing ahome with people who needed 24 hoursupport, 7 days a week, and he didn’tneed this. So, when he heard about inControl, he thought that this was hischance to be more in control of his lifeand to make some changes.Clive found the first in Control meetinghe went to ‘nerve wracking’. He wasmore confident at the second meetingand his confidence steadily grew.Clive’s family is important to him, sowhen he started planning for his future,he really wanted them to be involved.His Mum and his two brothers, Paul andMark, supported him to put his plantogether. Even though Mark lives inBradford and Paul lives in Canada, theyattended meetings, telephoned and sentemails to support Clive.Clive also did some training to becomea trainer of person centred planning.He also had support from Alison, a supportbroker, and his social worker. Witheveryone’s support and his training,Clive found that he was now makingdecisions about what he wanted to seechanged in his life.Plans were agreed, money was allocatedand Clive set about looking for a newhome. His brother, Paul, came over fromCanada and together they looked atquite a few houses.Eventually, they found the right house ina quiet residential area of Bristol. Pauldecided he would like to buy the houseand Clive was happy for Paul to becomehis landlord. Clive moved into his newhome in June 2005.Clive says ‘moving out is pretty good’.He says he is happier than before.No-one watches him take his tablets.His support staff still ask him if he hasremembered to take them but the supportis on his terms. He chooses whenhe goes to bed.When his brothers phone him, he answersthe phone himself now instead ofthe staff. Clive has learnt how to use hisown washing machine and is proud ofthe plants he has planted in his own garden.If he has problems now, the staffsort them out. If he has any problemswith the staff, he can, as he says, ‘sackthem’! It took Clive a while to get usedto being in control in this way, but nowhe is more confident and knows thatthings will change if he is not happyabout anything.However, as you would expect, noteverything went smoothly. For example,there were problems sorting out benefitpayments. In spite of support fromrelatives, support workers, the supportbroker and the Citizens Advice Bureau, 3months after moving into his new home,things still hadn’t been sorted out. Thebenefits staff in the various departmentsand offices seemed unable or unwillingto deal with Clive’s support staff whenphoning on his behalf. Issues wereoften passed from one member of thebenefits staff team to another each timethey phoned.But Clive is looking forward now. Hewould like to get a job (as long as hewill be better off financially!) He wouldlike to tell others about in Control.He would like to do this so that morepeople can do what he has done.Endnotes1 Wigan MBC, Best Value Report, the Wigan Housing Context, 20032 Newcastle City Council, Housing Strategy Consultation Document, 20063 Simon Duffy, Keys to Citizenship, Paradigm, 2003.A report on in Control’s first phase 2003-2005

79C h a p t e rEvaluation– support

81Chapter 8Evaluation – supportSummaryEvidence from the in Control pilots 1 shows a strong increase in the useof Personal Assistants. Nearly three times as many people used PersonalAssistants by the end of the evaluation period.Use of day centres reduced. Though only one person gave up their day centreplace entirely, the average number of days spent at day centres reducedby 28% across the whole group.There were early signs of the ability of individuals to force changes in thesupport provider market. One man who was dissatisfied with a provider’smanagement charge decided to look elsewhere. Providers were generallycautious about changing their services to cater for the more individualrequirements of those directing their own support.48% of people were satisfied with their support prior to their involvementwith in Control. The changes made in support arrangements led to a strongrise in satisfaction: 100% of people were satisfied.Personal Assistants and day centresA striking change in the nature of support that people chose once they hadcontrol in this area was the increased use of Personal Assistants (PA’s). Thenumber increased from eight at the time of the first interview (Time 1) to22 at the end of the period (Time 2) – a 175% increase.FIGURE 31Type of support Before AfterThis use of PA’s was not arequirement. Nor was it aSupport at home 20 22 consequence of the strong associationbetween Direct Pay-Employing PA’s 8 22ments and PA’s. (For manyUsing day centre 12 11 receiving Direct Payments,Hours in day centre 4.5 days 3.5 days the use of PA’s can be virtuallyautomatic.) Rather thisUsing family support 21 21preference for PA’s appearsUsing community support 8 15 to be a genuine choice. Themove by all of those in residentialcare has already been noted. The change in those people’s supportpartly accounts for the increased use of PA’s.8 Evaluation – support

82Though only one person stopped attending a day centre completely, thenumber of days spent in day centres reduced between the two Time Pointsfrom an average 4.5 days to an average 3.5 days. Though no clear link wasestablished between reduction in day centre use and an increased involvementin community, it is worth noting that satisfaction with communitylife also increased (see the next Chapter). This suggests that people werespending less time at day centres and more time actively engaged in theirlocal community.Once again, these changes led to important increases in satisfaction. AtTime 1, just under half of the people were unhappy with the support theywere using. By Time 2, everyone was reported as happy with the support theywere using. The increase in those who said they were ‘really happy’ withtheir support was even more defined: from one at Time 1 to 17 at Time 2FIGURE 32Are Are you you happy happy with with your your support?BeforeAfterCreative supportin Control anticipates that, once people direct their own support, therewill be a cumulative shift away from traditional services towards moreflexible support arranged to suit the person. Though disabled people whouse services have sometimes been called ‘consumers’, it is only now, whenpeople are genuinely free to choose how they spend their support money,that they are really consumers and have some economic power in themarket place. As Clive says in his story (see the previous Chapter), ifhe does not like what his support staff do, he has the power to appointreplacements.One person demonstrated their power as a consumer when they rejected aprovider’s charges. This man and the friend with whom he intended to sharea house had decided to use a particular organisation’s support once theyA report on in Control’s first phase 2003-2005

83controlled the funding. However, when he discovered that the organisationintended to charge a premium for working with two people at one time, heand his friend considered going elsewhere. The organisation complainedto the local authority that this was unreasonable. The man was undeterredhowever and made other more satisfactory arrangements.Another similar account of consumer choice comes from North Lanarkshire– a local authority whose work around Self-Directed Support preceded andinspired in Control. Mary and Billy Black, having negotiated with the localauthority to get a resource allocation for their son Stephen, arranged hismove from a residential home in England.The Blacks chose a local provider for Stephen’s support. However, theyquickly became dissatisfied with the management costs of the support. Theystopped the arrangement and took on the recruitment and management ofStephen’s support team themselves.As disabled people’s experience of Self-Directed Support grows, supportsthat are little used in traditional services seem likely to become morepopular. Disabled people will share information about what support typesrepresent good value, are responsive and help them to get the lives theywant. Support roles like community connector, good neighbour, job coachand life sharer will probably become more common. 2Such supports are not merely isolated pockets of good practice. For example,KeyRing, a supported living organisation emphasising community support,uses a role called Community Living Volunteer. 700 people use the supportof these local people across about 40 local authorities.Individual service provisionA demand for more responsive, person-centred supports has great implicationsfor service providers. If, for example, the trend away from day-centreuse (as indicated in the findings outlined above) continues, local authorities’plans for day service modernisation will soon be put to the test. Thatis to say, if people have buying power and do not choose day centre places,day services, like commercial businesses, will have to change their productsor suffer decline.Some organisations have already responded in radical ways. In Scotland,organisations like Inclusion Glasgow, Partners for Inclusion and C-Changefor Inclusion have been showing for over 15 years how an organisation canprovide support while the disabled person remains in control.8 Evaluation – support

84Partners for Inclusion sets out the following key principles for organisationswanting to change in response to the requirements of peopledirecting their own support:FIGURE 33Individual servicesRight relationships:Real LivesPeople are peopleStick with peopleStay small and localFlat structure, trainedand supported staffValue for moneyEvery service for every person is uniquely tailored and designedonly for them.Finding the right people and getting the relationships rightwith partners is essential – people supported, families, staff,professionals.Homes, families, jobs, relationships – all real, right and meaningfulfor the person.Different and equal, with individual gifts, strengths, weaknessesand needs.Listen, change, and ‘keep going till we get it right.’Keep connected, stay flexible and focus on people’s needs notorganisational needs.Minimises organisational complexity and control, facilitatescreativity and autonomy.Honest and transparent, working towards budgets controlledby person/family/staff teams where this makes sense.Partners for Inclusion – key principles 3Organisational systems are determined by these principles and are quite differentfrom those of most support providers. For example, support staff arerecruited for just one person. If a supporter is recruited to work with morethan one person, that worker has a contract for each person.The last principle is particularly important. Partners for Inclusion hold theperson’s support money in a restricted account within the organisation’sown accounts. At the end of the year, any surplus belongs to the person andnot the organisation. This Individual Service Fund is one of the optionsavailable at Step Four in the in Control process. It is an important choicealongside Direct Payments, Indirect Payments, Trust, Broker, and CareManager administration of the funds.A trusted and genuinely person-centred provider can be a good choice forthose wanting to delegate the arrangement of their support. However, providerswere, during the pilot period of in Control, often slow to take upthe challenge of recasting their services in response to support plans. Now,though, some providers are beginning this work. Paradigm, one of in Control’spartners, is currently beginning a provider development network. Thisnetwork will encourage members to work with people who have individualsupport plans. 4A report on in Control’s first phase 2003-2005

85Responsible use of fundingIf people have licence to use their funding flexibly, local authority financedepartments and auditors may ask what safeguards are in place to ensure thatfunding is used responsibly. In this move towards an entitlement approachto social care funding, the burden of accountability shifts towards the individual.How confident can we be that individuals and their supporters willuse the funding to achieve the objectives set out in their support plan?There is no evidence from the pilots that funds were misused in any way.As mentioned in chapter four, 79% of desired changes in people’s lives wereachieved in less than a year. This high level of positive change suggests thatfunding was used in the proper pursuit of clear support plan targets. We donot know what changes could have been achieved if the same people hadconventional care plans and typical support arrangements. Therefore, wecan only speculate how cost-effective were the support arrangements madewithin the pilot compared to prevailing care management arrangements.in Control’s suggestion is that, given that many of the group seemed to havelittle prospect of change at Time 1, these outcomes are much better valuefor money than could have been achieved in a similar time span by the currentsystem.Another side of the cost-effectiveness question concerns the value added bylocal authority monitoring of people’s use of funding.In Wigan, an audit of Direct Payments use was conducted over three years.This exercise cost £55,000 a year. During this time only one minor case ofmisuse was uncovered. This concerned the inappropriate use of taxi receipts.Learning from this process, the Authority then adopted a different approach,one with a more favourable cost-to-benefits ratio.Oldham, too, has adopted a pragmatic approach to the monitoring ofpersonalised budgets. No monitoring of individuals’ funding will beundertaken outside an annual review and checks within the standard contract.In practice, there is a light touch within the contract – a specification that‘we expect you to keep basic records of your spending should we choose toaudit it’.Social services departments retain a duty of care and there is a clear contractfor the management of the funding. This contract sets out clear reportingrequirements for individuals with personalised budgets.Oldham’s contract is provided as a model on in Control’s website:http://www.in-control.org.uk/how/local_authorities.php.8 Evaluation – support

86Family supportThe role of families in support deserves consideration. Until now some familiesmay have felt marginal to the process of care planning and support fortheir relatives. If they are marginalised by current processes, their absencein support arrangements is a missed resource.Like Jon’s mother in the story at the end of Chapter One, many familymembers are in the best position to know what will work for their relative.Family members are, of course, in the main, the people who love and careabout their relative.in Control assumes that family members will often play a critical role inpeople’s support. They are often best placed to help someone to plan. Theymay also be the best choice as Agent if the disabled person is not able toagree their own support plan.If we are relying on families to play such roles, a question arises of whetherfamilies should be paid for their support. Clear answers at either extremecause difficulties. On the one side, the system could not pay for all supportprovided naturally by families. In any case, many families would considerthat such payment is inappropriate for the support that they naturally wantto offer to their relatives.On the other side, not acknowledging family support while relying on familiesto provide that support can lead to perverse incentives. Families maydownplay their own availability or ability to support a disabled relative inan attempt to trigger a higher level of fundingin Control, in the Resource Allocation System, seeks a solution in the formof a moderate means testing of family capacity to support a relative. Theself-assessment questionnaire includes a section which considers the impactof caring for a disabled relative on family carers. Anecdotal evidence fromstakeholder events held in the in Control pilots suggests that this approachmeets with broad approval.Laura’s storyLaura’s Mum and Dad supportedher to tell her own story - howshe now has her own PersonalAssistants and is living life herway.Twenty years ago I was born in Liverpoolon the 8th February 1985. Mymum and dad called me Laura JaneHughes. At this time my dad, Tom, andmum, Elaine, did not know how specialI was. At 12 yrs old I was diagnosedwith Rothmund Thompson Syndrome.This is a rare genetic condition. I havelearning difficulties with challenginghealth needs and limited communicationskills.I attended Hope special school from theage of three until I was nineteen. WhenI turned fourteen, at my transitionalreview my mum and dad were advisedA report on in Control’s first phase 2003-2005

87to look around local day centres whichthey said would be the only suitableplace to meet my needs, as they didn’tthink I would cope with a collegeenvironment.After looking around the day centresmy mum and dad knew they were notright for me. The problem was thatmy local college didn’t offer nonfoundationcourses for people withlearning disabilities.So I started to access 10 hours supporta week through direct payments toenable me to have a more independentsocial life without my mum and dadalways there.I now employ six Personal Assistantswith the help of my parents. They workwith me and help me do things thatwould have otherwise been impossible.With the help of my Personal AssistantI attend Skelmersdale college 4 days aweek.I hope the teachers and social workerswho said I was not suitable for collegeare reading this.I have a job with Scope collecting andcounting the money from the charityboxes with help from Personal Assistants.More recently I have started in ayoung person’s centre which is somethingnew for the 16- 25 age group.I am very busy in the evenings and atweekends. I enjoy line dancing, goingout for meals and drinking SmirnoffIce in my local pub, where I am wellknown. I also enjoy swimming andbowling at every opportunity.Endnotes1 The six pilot sites were: Essex, Gateshead, Redcar and Cleveland, South Gloucestershire,West Sussex, and Wigan.2 For further information on support types, see Top Tips for Supporters, www.in-control.org.uk orSimon Duffy, Keys to Citizenship, Paradigm, 2003.3 Julia Fitzpatrick, Dreaming for Real, Journal of Integrated Care, February 2006.4 For more information see: www.paradigm-uk.org.8 Evaluation – support

89C h a p t e rEvaluation– community life

91Chapter 9Evaluation – community lifeSummaryParticipation in community life is an acid test of the success of Self-DirectedSupport. in Control found that, when people were able to organise theirsupport in an individual way, there were significant increases in social relationshipsand general satisfaction. The number of people living with familywho were satisfied with their relationships and community connections rosefrom 67% to 100%. Of those living outside the family, 56% were satisfiedbefore and 100% after gaining control over their funding and support. Overallsatisfaction with community life rose from 61% of people to 100%.Given the short evaluation period – under 12 months - and the fact thatthe development of community relationships can be a long process, theseare important findingsA small grants initiative – Small Sparks – showed that, for a very smallinvestment of funds and virtually no worker input, creative and enduringcommunity projects could be produced by disabled people.There were no indications that people were more at risk from wider involvementin local community activity.Members of the community?For many people with learning disabilities, active membership of local communitieshas proved elusive. The principle of Inclusion set out in ValuingPeople and many other Government policy documents has remained anaspiration for the majority and reality for only a minority.Few people have friends apart from those paid to be withthem, their close families, or other people with learning disabilitieswith whom they live. Being part of the communitybenefits everyone. 1Self-Directed Support is a vehicle to community participation and citizenship.So the findings around changes in individuals’ community life areparticularly important as an indicator of the success or otherwise of in Control’smodel.9 Evaluation – community life

92Satisfaction with community life overall increased significantly. At the firstinterview (Time 1) 11 people said that they were unhappy with their sociallives. At the second interview (Time 2) none of the 31 people said theywere unhappy.FIGURE 34Are you happy with your community life?BeforeAfterEight people received support from members of local communities (e.g.church groups) at Time 1. This increased by Time 2 to about half of people(15). This finding is important in the context of a debate about the hospitalityof communities. Many in services fear that prejudice towards disabledpeople on the part of ordinary members of the community is a basic blockto greater participation. This increase in a short space of time indicates thatdisabled people can count on significantly more support from members ofthe community than is currently being accessed.There were comparable increases in the number of social contacts. At Time1, most people had limited social contacts beyond other family members.For example, of those living outside of family homes, seven people had nocontact with friends and seven people reported no contact with acquaintancesin the past month. At Time 2, four of the 11 from whom informationwas available reported positive changes in their social lives and relationships,largely in terms of gaining greater freedom and a more active andvaried social life within local communities.One interesting finding is that people living with families were the happiergroup at the start of their involvement. This finding underlines the importanceof establishing the right approach to the involvement of families inthe support of disabled people. As argued in the last chapter, the contributionsof family members can be properly valued within a reasonable and fairresource allocation process.A report on in Control’s first phase 2003-2005

93Small SparksThe above data seems to indicate that increased numbers of social contactsand greater satisfaction with community life can be achieved simply bytransferring control over funding, planning and support to disabled people.While in Control had confidence in the ability of people and their closesupporters to establish connections in their communities, it also tested asmall grants programme - Small Sparks - as a practical, inexpensive means ofhelping people to get involved. The name and idea of Small Sparks are borrowedfrom the successful community development project run by the Cityof Seattle Department of Neighborhoods, Involve all Neighbors Project. 2Four of the pilots each received £2,500 from in Control to distribute asgrants of up to £250 on a match-funding basis. Small Sparkers could providetheir contribution in funding (perhaps obtained as a donation from a localbusiness), in materials, or volunteer labour.There were simple criteria for the projects:✳ they must involve new people in the neighbourhood✳ they must be completed within 8 weeks✳ a record must be made (probably in photos)✳ Small Sparkers must come and tell their story at a celebration.The local authority had to ensure that the programme remained low tech,low administration, and low scrutiny - trusting people to use the £250 sensibly.In practice, this meant that local authorities handed over the funds incash and then waited to see what happened.Any fears that funds might be misused or wasted proved, just as in the caseof concerns about misuse of the main Personalised Budget, to be unfounded.People, without exception, used their Small Sparks grants responsibly.For this very small investment (both in funds and in the minimal workerinput required) diverse and imaginative projects were produced. Each atleast doubled the £250 investment with the matching of resources fromthe Small Sparker. One project, a sponsored cycle ride, produced a £7,000return for a local charity.National significanceThe modest amount of funding involved in Small Sparks might suggest thatthis approach is peripheral to any strategic approach to inclusion. in Controlbelieves that, on the contrary, Small Sparks is a practical tool which couldbe at the centre of a strategy for inclusion and, particularly, prevention.For that reason, in Control now includes Small Sparks grants as an integralpart of the Resource Allocation System. The grants can be offered to9 Evaluation – community life

94anyone – including those people with high support needs. But they are ofparticular interest for those people who are on the edge of Fair Access toCare eligibility. Currently, some people who are not eligible for servicesmay fare badly when isolated and left to their own resources. For want ofa little support these people can find themselves on a downward spiral ofproblems – possibly leading towards crisis and, ironically, eligibility for services– a scenario well known to many social services staff. Independence,Well Being and Choice, the Green Paper on Adult Social Care, supports anapproach exemplified by Small Sparks:There is a small but growing evidence base indicating significant potentialbenefits in low-level prevention aiming at improving well-being… 3Small Sparks projects work best when not launched from within care groupsilos. Those projects which reach out to find allies within the communityproduce perhaps the most enduring results – relationships which extendbeyond the life of the project. Finding local people who share an interestand want to organise the project jointly seems key to an integrated communitydevelopment approach.Safety in communityAn often-stated concern of professionals and families about Self-DirectedSupport is that disabled people are vulnerable to abuse from unscrupulouspeople in the community. This view suggests that people are safer in settingswhere establishments and staff are registered with the Commission forSocial Care Inspection.The argument that people are safer in registered premises when supportedonly by those with Criminal Records Bureau checks can, of course, be contested.A report by Action on Elder Abuse 4 , funded by the Department ofHealth, states that data on elder abuse shows how 29% of abuse took placein institutional settings or was conducted by care workers –18.2% in institutionsand 10.2% by paid care workers outside institutions.24.3% was carried out by family members. (Information was not known ornot supplied for the remainder in the study).However, the full importance of these statistics comes into focus when weconsider that only 4.79% of people in the UK over retirement age (60/65)live in a care setting 4 and yet 29% of all calls reporting abuse were aboutpeople who were in residential or nursing homes or hospitals.Further concern is raised by the Healthcare Commission and Commissionfor Social Care Inspection investigation into services for people withlearning disabilities at Cornwall Partnership NHS Trust in 2006. Thisinvestigation highlighted:A report on in Control’s first phase 2003-2005

95…years of abusive practices and, in some cases, real injury sufferedby some people.Investigators referred over 40 people under No Secrets guidancefor the protection of vulnerable adults. 5These statistics clearly challenge the view that vulnerable people are safe inthe care of registered institutions and staff.An alternative view is that communities have the capacity to care for theirmembers. In order for people to be protected by the community at large,they must be part of that community – present and participating. SmallSparks is one way of helping people to find their place in the community.Joseph Tomlinson in Wigan organised a cycle ride. There was an importantspin-off. Some weeks later Joseph’s mother got a phone call. The caller said:‘I was on the cycle ride. I’ve just seen your Joe with people I don’t recognize.Is that ok?’ This kind of neighbourly vigilance may answer the questionraised by those who worry the community is a dangerous place for disabledpeople.Small SparksSome of the 40 Small Sparksprojects produced with just£10,000.In Wigan, Joseph Tomlinson, withthe support of his mum and dad,used the money to print a flyeradvertising a sponsored cycleride. 200 people came. £7,000 wasraised for Wigan Scope.Joe became well known in theneighbourhood for his part inthe ride. His mother, Caroline,says ‘Lots of people knew Josephbefore, but a lot more peopleknow him now’.In Redcar people at a day centrehave an allotment. Just beingin an ordinary place in thecommunity had not automaticallymeant they were well connectedwith other allotment-holders.They got a Small Sparks grant.They spent it on a barbecue, agazebo, food and drink. Theyinvited the other allotmentholdersto a barbecue. Peoplecame and there were probablylively conversations about whohad the biggest tomatoes. TheSmall Sparkers now have plans toraise some more money to put upa fixed shelter where everyonecan gather when it rains.In West Sussex some people hadfound it difficult to open a bankaccount. They decided to find outtheir rights and tell others. Theyused the Small Sparks money tobuy display materials and got theagreement of a local bank to setup a stall and explain ‘Easy stepsto banking’.Another project in West Sussexwas similar to one in SouthGloucestershire. Both wereabout children. Both reachedout to other people in theneighbourhood who share9 Evaluation – community life

96the Small Sparkers’ interest inchildren. A young woman in WestSussex liked the local toy libraryand offered to help the librarycelebrate 30 years of its work.They worked together to arrangea playday, a lively event with amusic bus, arts and crafts andother activities.The people from the toy librarycame to the celebration andwere full of praise for the youngwoman who initiated the project.They immediately started to plantheir next event together.Sonia Nethercott in SouthGloucestershire said: ‘I wantpeople to talk about what morecan be done for under 5s in thisarea.’ She organised a sportsday for under-fives at the localcommunity centre. Lots of peoplecame. Sonia said that she found itvery stressful to organise but sheis proud of her achievement.In these last two projects disabledpeople worked in alliance withlocal people around a sharedinterest. Carolyn Carlson, theperson who started the SmallSparks idea in Seattle, says thatthis approach holds the greatestpromise of people making lastingrelationships.Endnotes1 Department of Health, Valuing People – A New Strategy for Learning Disability in the 21st Century, 2003, p. 83.2 For more information go to: www.ci.seattle.wa.us/neighborhoods/involve/3 Department of Health, Independence, Wellbeing and Choice, 2005, p. 45.4 Office for National Statistics, 1999.5 Healthcare Commission and Commission For Social Care Inspection, Joint Investigation into Services for Peoplewith Learning Disabilities at Cornwall Partnership NHS Trust, 2006, p. 59.A report on in Control’s first phase 2003-2005

97C h a p t e rThe future forin Control

99Chapter 10The future for in ControlSummaryin Control has been set up as partnership between central Government,local government and the third sector.80 local authorities have become members of in Control and are beginningto implement Self-Directed Support across the whole social care system.Four local authorities have committed themselves to the total transformationof their services into systems of Self-Directed Support – covering allcare groups.Policy contextIn 2003, at the beginning of in Control, it was clear that any model ofSelf-Directed Support had to be feasible within the existing resource andpolicy context. There would be little point developing a new system if localauthorities and their partners could not afford it or policy would not allowit.The pilots attracted strong interest from policy makers. The first of threerecent policy documents, Improving the Life Chances of Disabled People,set out a radical agenda for the transformation of service systems used bydisabled people so that people could achieve Independent Living and directtheir own lives.in Control was strongly cited in this document and inspired the proposal thatpeople should have access to their own Individual Budgets – which mightbe drawn together from various sources. Individual Budgets then featured asa key lever for change in the adult social care Green Paper – Independence,Wellbeing and Choice.A third policy paper, Opportunity Age, confirmed the intention to explorethe potential for Individual Budgets for all people using adult social care,including older people.Following publication of these policy documents, a Government pilotIndividual Budget Programme was initiated. Thirteen local authoritiesare developing their systems to deliver Individual Budgets over a two-yearperiod from January 2006. Our Health, Our Care, Our Say, the health The Future of in Control

100and social care White Paper, has now confirmed that these pilots have thepotential to set the direction for social care for the next generation:Individual Budgets offer a radical new approach, giving greatercontrol to the individual, opening up the range and availabilityof services to match needs, and stimulating the market torespond to new demands from more powerful users of socialcare.1The Care Service Improvement Partnership (CSIP) that coordinates theIndividual Budgets Programme and the Department of Health recognisein Control’s pioneering role in developing Self-Directed Support and haveasked it to support the Individual Budget sites in developing their localsystems.If the pilots are deemed successful, the Government has stated that IndividualBudgets will be rolled out across all local authorities over the next fewyears such that all people using social care have the choice of an IndividualBudget by 2012.From pilot to national programmeThe Government’s on-going commitment to the development of Self-Directed Support has ensured that in Control and its partnership has grownand developed.in Control itself has changed. It is no longer an important demonstrationproject. 80 local authorities are now members of in Control – more thanhalf of English local authorities. Membership involves the active changingof local social care systems to Self-Directed Support. Nine of these localauthorities are also Individual Budget Programme sites.The Department of Health, the Care Services Improvement Partnership,and Mencap are key sponsors and provide vital funding support.A report on in Control’s first phase 2003-2005

101The following organisations are now partners of in Control, committed toboth promoting Self-Directed Support in their work and sharing what theylearn with the whole community through the in Control Partnership:First StepFoundation for People with Learning DisabilitiesHelen Sanderson AssociatesInclusion NorthKnow what I meanMencapMoveable FeastNational Association of Adult Placement SthemesNorth West Training and Development TeamOlder People’s ProgrammeParadigmValuing People Support TeamFIGURE 35in Control’s structure and functions.While this partnership is powerful, it is left with at least two challenges.First, only one of the partners – First Step – is clearly a user-led organisation,as defined by the disability movement.The second challenge is the dominance of organisations who are expert inservices for people with learning disabilities. While this presents in Controlwith a valuable stock of expertise, it also means that some organisationsnow considering Self-Directed Support may think that in Control is onlyrelevant to people with learning disablities. This is not the case and inControl is working to ensure that Self-Directed Support is not limited toany group. The Future of in Control

102The principles that underpin Self-Directed Support apply to everyone.Many local authorities realise this is the case. Of the 80 local authoritymembers of in Control, more than 20 are already extending Self-DirectedSupport to older people, people with mental health problems, those withphysical or sensory impairments, people with brain injuries, children withdisabilities, and carers.in Control encourages agencies working with other groups of disabled peopleto join this partnership to ensure that this extraordinary opportunity forchange is seized.in Control has a clear brief:1. To develop its system of Self-Directed Support by constantly gatheringlearning from the implementation of the system, updating the system andpublishing new versions of the model.2. To support as many authorities as possible to change their existing systeminto one of Self-Directed Support.3. To give information and advice to disabled people and their families aboutSelf-Directed Support and indicate options for getting support.4. To support the development of services and supports that make it easier andmore effective for people to use Self-Directed Support (e.g. to encouragenew forms of brokerage and support provision).5. To advise policy-makers on how to build a legislative and monitoringenvironment that is more supportive of Self-Directed Support.6. To enable authorities to monitor their own performance and to shareinformation on resources, outcomes and services.A programme for real changein Control considers that the findings from the evaluation of the six pilotprojects as presented in Chapters Four to Nine provide strong encouragementfor further action. The experiences of those local authorities thathave begun to implement Self-Directed Support since the end of the pilotsin 2005 also provide further confidence in the viability of the new system.in Control is therefore pressing ahead with a wide-ranging programme tosupport real change in local social care systems. As described in Chapter2, in Control constantly updates and improves its Operating System basedupon the learning and innovations of its local authority members. Thelessons from local implementation are shared with policy makers withinGovernment including the leaders of the Department of Health’s IndividualBudgets Pilots Programme.A report on in Control’s first phase 2003-2005

103in Control’s programme incorporates the Self-Directed Support activitiesof its partner organisations. In the coming period this programmeincludes:✳ technical refinements to the in Control model of Self-Directed Support.For example, gathering lessons and data from local implementation of theResource Allocation System (RAS) and using these to further develop theRAS✳ supporting local authority members through induction programmes,network events and regional forums that enable local authorities to sharedirectly experiences of implementing Self-Directed Support✳ sponsoring the creation and development of a brokerage network that willsupport its members in brokerage work and will gather and co-ordinate thelessons being learned through the diverse efforts of broker members✳ bringing experiences from in Control’s work to the transition of youngpeople from childhood to adulthood✳ the promotion of models of support provision that are consistent withthe principles of Self-Directed Support. In practice, this involves work withproviders to reshape their services such as to respond to individual plans✳ further work to develop Small Sparks and other community building tools asimportant parts of a strategy to help disabled people both contribute to andget support from their local communities✳ supporting the development of family and self-advocate leadership.in Control Trainers is one initiative begun by a group self-advocates who aredeveloping accessible training materials and delivering training directly toother disabled people✳ developing on-line resources to help both individuals who want to be incontrol of their support and local authorities that want to create a Self-Directed Support system✳ the production of further key publications; for example a Resource Guidefor Families, and a Community Connecting Workbook. Information onexisting publications can be found on the in Control website, where thesepublications are available on an open-access basis. For a summary of keypublications, see panel on the next page.These are just some of the means by which in Control will continue to playa leading role in the development of Self-Directed Support. Its partnershipwith disabled people’s groups, Government, local statutory authorities, thevoluntary and community sector is a strong one, and one which holds thepromise of a genuine revolution in social care.Among the findings in this report, there is, perhaps, one overriding conclusion.Disabled people and their supporters, when offered the chance,quickly demonstrate their capacity to take control and to make the mosteffective use of the community’s funding of social care.Endnotes1 Department of Health, Our Health, Our Care, Our Say, 2005, p.59. The Future of in Control

104in Control publicationsThe following is just a sample of in Control’s published materials on Self-Directed Support. These and many other guides, discussion papers, tools,examples, stories and articles can be found at www.in-control.org.uk.Guides to Self-Directed Support7 Guides for local authorities wanting tochange their system to one of Self-DirectedSupport. These cover the in Control 7 stepsfrom the local authority perspective:1. Resource Allocation and Assessment2. Support Planning3. Decision-Making4. Individual Contracting5. Market Management6. Community Development7. Quality Improvement.PresentationsThese presentations are available for all touse to explain how the in Control systemworks.✖ in Control – a comprehensive presentationon the rationale for and benefitsof in Control’s system.✖ Resource Allocation – a presentationwith detail about how to set up theRAS.✖ Policy – a presentation by SteveJones, ex CEO of Wigan MetropolitanBorough Council, exploring the policycontext for Self-Directed Support.Discussion papersDiscussion papers explore a range ofsubjects including:✖ Individual Budgets✖ Supported Decision-Making✖ Support Brokerage✖ Community Development✖ Individual Services✖ Resource Allocation.Practical toolsThere is a big range of practical toolsand model documents on the website.Examples are:✖ Self-assessment questionnaires – partof the Resource Allocation System✖ Supporting Safely – a guide on risk✖ In the Driving Seat - a workbook forpeople making their own support plan✖ Top Tips - a short version of the book‘Keys to Citizenship’ - for people whoare helping someone to plan.✖ Easy English Brochure - how in Controlworks, with pictures. There is also anUrdu translation.These and many other materials are available on an open-access basis andcan be reproduced or adapted in accordance with in Control’s licenceagreement, which can also be found on the website.A report on in Control’s first phase 2003-2005

105r e f e r e n c eAppendix 1

107Appendix 1Evaluation data by Professor ChrisHatton, University of LancasterThe ultimate test of the in Control model is whether itdelivers socially significant changes in the lives of thepeople using it. One way of evaluating the impact ofthe pilot project on participants’ lives was to interviewpeople (along with other important people in their lives)at two time points - before and after taking part in inControl.The before and after questionnaires were designed bythe in Control team. The before questionnaires wereused to capture important aspects of people’s livesaccording to the six keys to citizenship:✳ self-determination✳ direction✳ support✳ money✳ home✳ community life.The after questionnaires were used to find out what (ifanything) had changed about people’s lives since theintroduction of in Control. In total, 31 people completedthe questionnairesThe outcomesin Control set out to implement a new system and learnfrom the experience, rather than to formally evaluate an‘intervention’. In terms of traditional research design,this means that we have to be cautious about interpretingthe questionnaire results, particularly in termsof assuming that the in Control pilot project caused thechanges reported here. It is also important to note thatinformation was collected from 31 people – not all ofthose that participated. Therefore, we cannot be certainthat we would see the same changes if informationcould have been gathered from everyone going whoparticipated in the project.Having taken these cautions into account, we cansay that the in Control pilot project has been associatedwith important improvements in people’s lives.What is more, improvements in relation to every keyto citizenship were reported less than a year after theintroduction of in Control.People are more self-determined. They were more likelyto have a bank account, make important decisionsthemselves or with families (rather than services makingthe important decisions). They were happier with thelevel of control they have over their lives.People have a better sense of direction in their lives.They were more likely to have a person-centred planand to be happy with their plans for the future. Mostpeople who had wanted to change fundamental aspectsof their lives had achieved some important changes.People’s support has improved. More people wereemploying personal assistants to work specifically withthem. They were spending less time at day centres andpeople were happier with the support they were using.People’s money situation has improved. More peoplewere using ILF funding and direct payments. They werehappier with the amount of money they had.People are improving their home situation. By Time 2,no-one was living in registered care homes – 10 hadbeen living in care homes at Time 1. More people wereliving in their own tenancies. People’s homes containedfewer other people. Participants were happier with theirhome situation.People’s community lives are improving. Some peoplereported more active, varied and integrated social liveswith bigger and more varied social networks. People felthappier with their relationships.Such progress within just one year seems to presentstrong evidence of the beneficial impact of Self-DirectedSupport.It will, of course, be important to assess whether similarpositive change takes place over a longer period forthose who did not yet report significant change.And it is important to note that some circumstancesseemed more difficult to change – at least within ayear. Notably, only one person had stopped using a daycentre altogether (although the average number of daysspent in a day centre had reduced by 1 day). Living inhospital units presented a blockage to change for fourpeople.Clearly, the full impact of Self-Directed Support onpeople’s status as citizens and on their participationin community life can only be assessed over a longertimespan. Meantime these early indications that peoplehave a stronger hold on the keys to citizenship whendirecting their own support provides encouragement forfurther action.The statistical information supporting these conclusionsis included below. Bar charts provide a quick means ofassessing the changes.Analysis of the questionnairesIn total, 31 people completed the questionnaires bothbefore and after the introduction of in Control, withan average 46 weeks between the first and secondquestionnaires (range 18-61 weeks). From the informationthey gave, we have examined what people’s liveswere like before the introduction of in Control andwhat (if anything) had changed for the group of 31people since they began their participation in in Control.This section of the report uses numbers to talk aboutwhether things generally got better for the group of31 people as a whole. Where we talk about things Appendix

108increasing, decreasing or improving we are noting thatthere has been a statistically significant change frombefore to after the introduction of in Control (in otherwords, things where changes from Time 1 to Time 2 areextremely unlikely to be the result of random fluctuationsover time). Statistical details are available in thetables in Appendix 1.Self-determinationThe number of people with their own trusts was verylow at both time points (no-one at Time 1; 3 peopleat Time 2). However, the number of people with bankaccounts was much higher and increased from Time 1(23 people) to Time 2 (29 people). Many people withbank accounts at Time 1 had also opened additionalaccounts to handle aspects of their individualisedbudgets.Few people required or reported having a recordedcommunication method at both time points (5 people atTime 1; 7 people at Time 2).The number of people making important decisions abouttheir life increased from Time 1 to Time 2. At Time 1, 17people did not make these decisions, 8 people sometimesmade important decisions or had some influenceon the decision-making process, and 6 people madethe important decisions about their lives themselves. AtTime 2, 14 people did not make important decisions, 5people had some influence on decision-making and 12people made the important decisions about their livesthemselves. For example, only 3 people at Time 1 hadchosen the staff who were supporting them; by Time 2this number had increased to 13 people.There was also a change in the person seen as themajor decision-maker. At Time 1, fairly equal numbersof people (9), family members (10) and services/professionals(11) were seen as the major decision-makerin the person’s life. By Time 2, the people themselves(12) and family members (13) were more likely andservices/professionals less likely (5 people) to be seen asthe major decision-maker in the person’s life.At Time 1, most people were unhappy with the level ofcontrol they had over their lives (7 really unhappy; 11unhappy; 13 quite happy; no-one really happy). This hadstrongly improved by Time 2, when almost everyonewas reported to be happy with the level of control overtheir lives (no-one really unhappy; 1 person unhappy; 13quite happy; 17 really happy).DirectionAt Time 1, less than half of people (12) had a personcentredplan; by Time 2 this number had stronglyincreased to almost all the people (27). At Time 1, justover half of people were at least quite happy withtheir plans, although a substantial minority of peoplewere unhappy (4 really unhappy; 7 unhappy; 15 quitehappy; 4 really happy). This had strongly improvedby Time 2, when almost everyone was reported tobe happy with their plans (no-one really unhappy; 1person unhappy; 9 quite happy; 21 really happy).At Time 1, a majority of people wanted to changefundamental aspects of their lives, including wherethey lived (17), who they lived with (16), what they didwith their time (26) and who supported them (18). AtTime 1, 10 people also reported other specific aspectsof their lives they wanted to change, including usingpublic transport rather than segregated transport,having adaptations to their home, support to maintainbetter health, having more time with individuals andhaving more time alone. Two people reported that theywanted everything about their life to change.Young people at school generally wanted to stay livingwith their families but have more support to have afuller life outside school, whereas adults living outsidethe family home were much more likely to reportwanting to change where they lived, who they livedwith and who they were supported by.By Time 2, positive changes had taken place for amajority of people who wanted change in each area oflife. 76% of people who had wanted to change wherethey lived had moved home; 81% of those wantingto change who they lived with had made this change;69% of people wanting to change what they did hadmade positive changes; 89% of those wanting tochange who supported them had made this change.90% of people wanting specific changes had madethese changes.SupportMost people (26) received some form of support fromservices at both Time 1 and Time 2. Much of this was inthe person’s home (20 at Time 1; 22 at Time 2). At Time1 a minority of people were employing personal supportstaff specifically to support them (8); by Time 2 this hadstrongly increased to a majority of people (22).Less than half of people were using day centres at Time1 (12). Only one person had stopped using day centresaltogether by Time 2 (11 people). However, the numberof days spent in day centres did reduce from Time 1to Time 2, from an average 4.5 days at Time 1 to anaverage 3.5 days at Time 2.At Time 1, around half of people were unhappy with thesupport they were using (6 really unhappy; 9 unhappy;13 quite happy; 1 really happy). There was a strongimprovement by Time 2, when everyone was reported ashappy with the support they were using (no-one reallyunhappy or unhappy; 12 quite happy; 17 really happy).MoneyAt Time 1, most people did not know the cost of theirwhole support package (5 people), and this did notsignificantly improve by Time 2 (10). Relatively fewpeople reported detailed cost breakdowns for thedifferent aspects of support.In terms of sources of money for support (30 peopleanswered these questions), very few people earnedwages at either time point (1 person at Time 1; 3 atTime 2). Almost everyone at both time periods receivedbenefits for their support (30 at Time 1; 29 at Time 2).Benefits commonly received were DLA (26 at Time 1and Time 2) and income support (13 at Time 1; 17 atTime 2); very few people received incapacity benefit (1at Time 1; 3 at Time 2), housing benefit (1 at Time 1; 5at Time 2) and SDA (2 at Time 1 and Time 2). There wasan increase in the number of people claiming ILF moneyA report on in Control’s first phase 2003-2005

109(no-one at Time 1, 6 at Time 2) and a strong increase inthe number of people getting direct payments (1 at Time1; 16 at Time 2), although people differed in whetherthey considered their in Control resource allocation as adirect payment or not.At Time 1, just over half of people were unhappywith how much money they had (9 really unhappy; 7unhappy; 12 quite happy; 2 really happy). There was astrong improvement by Time 2, when almost everyonewas reported as happy with how much money they had(1 really unhappy; 1 unhappy; 15 quite happy; 13 reallyhappy).HomeAt Time 1 people were living in diverse locations, mostcommonly with family (14), in registered care homes(10) or in hospital units (4). 1 person lived in their owntenancy, 1 in adult placement and 1 in foster care. AtTime 2 there were some continuities (15 lived withfamily, 4 still lived in hospital units and 1 person stilllived in foster care). However, no-one at Time 2 wasliving in a registered care home (10 had their owntenancy and 1 person jointly owned their home). Thenumber of other people in people’s homes decreasedfrom Time 1 (average 5.2 other people, range 1-12) toTime 2 (average 2.6 other people, range 0-7). 4 peoplelived alone at Time 2.At Time 1, most people were happy with their homesituation, particularly those living with their family (4really unhappy; 7 unhappy; 10 quite happy; 10 reallyhappy). However, there was an improvement by Time 2,when most people were reported as really happy withtheir home situation (no-one really unhappy; 2 unhappy;6 quite happy; 23 really happy).Community LifeMost people at both time points were accessing extensivesupport from family (21 people at Time 1 and Time2). A minority of people received support from membersof local communities (e.g. church groups) at Time 1 (8people). This had increased by Time 2 to about half ofpeople (15).At Time 1, most people had limited social contactsbeyond other family members. As the patterns of socialcontacts were quite different for people living withtheir families compared to people not living with theirfamilies, we looked at information for these two groupsseparately.All the people (mostly young people) living with theirfamilies at Time 1 saw their parents every day and otherfamily members regularly (at least twice a month).However, 4 people (of 10 where there was information)were reported to have had no contact with friends inthe past month, and 6 were reported to have had nocontact with acquaintances in the local communityin the past month. At Time 2, 7 of these people hadreported positive changes in their social lives and relationships,particularly in having more frequent and morevaried social lives. This improvement in social live oftenalso reduced dependence on their parents and familiesaround arranging their social lives for them. Althoughmost people were at least fairly happy with their relationshipsat Time 1 (no-one really unhappy; 4 unhappy;4 quite happy; 4 really happy), this had improved byTime 2, with everyone reported as being happy withtheir relationships (no-one really unhappy or unhappy; 4quite happy; 8 really happy).At Time 1, people not living with their families alsoreported limited social contacts. Most people (9 out of13) had contact at least monthly with their parents andwith other family members (7). However, just over halfof these people at Time 1 were reported to have had nocontact with friends (7) or acquaintances (7) in the pastmonth. At Time 2, 4 of the 11 from whom informationwas available reported positive changes in their sociallives and relationships, largely in terms of gaininggreater freedom and a more active and varied social lifewithin local communities. Although most people wereat least fairly happy with their relationships at Time 1(5 really unhappy; 2 unhappy; 6 quite happy; 3 reallyhappy), this had improved by Time 2, with everyonereported as being happy with their relationships (no-onereally unhappy or unhappy; 5 quite happy; 10 reallyhappy).To gain some idea of how people spent their time,people at Time 1 were asked to write in a typical week’sactivities, with each day divided into three sessions(morning, afternoon, evening) resulting in a total of 21sessions per week. Again, the information is given separatelyfor people living with their families and peoplenot living with their families.At Time 1, we had information on the typical weeklyactivities of 13 people living with their families. Of the13 people, 8 were engaged in education (total average5.5 sessions per week) and 5 people were engaged inwork or work experience (total average 1.2 sessions perweek), with no-one using a day centre. Almost everyonewas engaged in leisure or other activities in integratedsettings (11 people; total average 4.5 sessions perweek), with fewer people involved in leisure or otheractivities in segregated settings (6 people; total average1.1 sessions per week). Finally, everyone spent time athome (13 people; total average 8.6 sessions per week).By Time 2, 6 of 9 people reported positive changes intheir activities, largely in terms of engaging in moreactivities that were more varied, more enjoyable andmore integrated.At Time 1, we also had information on the typicalweekly activities of 13 people not living with theirfamilies. Of these 13 people, few were engaged ineducation (3 people; total average 1.0 sessions perweek) or work/work experience (2 people; total average0.2 sessions per week), with most people using a daycentre (8 people; total average 4.2 sessions per week).Everyone was involved in some leisure or other activitiesin integrated settings (13 people; total average 4.5hours per week), with fewer people involved in leisureor other activities in segregated settings (4 people;total average 0.5 sessions per week). Finally, everyonespent time in their home (13 people; total average 10.6sessions per week). By Time 2, 4 of 9 people reportedpositive changes in their activities, largely in terms ofbeing busier and more integrated and reducing theamount of time spent in day centres. Appendix

110Full details of statistical results fromthe before and after questionnaireTable 1: Self-determination indicatorsCategory N. at Time 1 N. at Time 2 Difference over time?Trust 0 3 No change (p=0.25*)Bank account 23 29 Increase (p=0.031*)Recorded communication method 5 7 No change (p=0.50*)(for those with no words)Choose staff 3 13 Increase (p=0.006*)Making important decisions about lifeIncrease (z=2.71; p=0.007**)No 17 14Partial 8 5Yes 6 12Who is seen as the decision-makerIncrease (z=-2.41; p=0.016**)Person 9 12Person + other 1 1Family member 10 13Service/professionals 11 5Overall happiness with level of control over life Increase (z=4.47; p

111Table 3: Support indicatorsCategory N. at Time 1 N. at Time 2 Difference over time?Use support from services 26 26 No change (p=1.00*)Use support where you live 20 22 No change (p=0.69*)Use personal support staff 7 22 Increase (p

112Table 6: Community life indicatorsCategory N. at Time 1 N. at Time 2 Difference over time?Support from family/friends 21 21 No change (p=0.63*)Support from community 8 15 Increase (p=0.016*)People living with familyContact in past monthParents 14 (of 14)Other family 11 (of 11)Friends 7 (of 10)Acquaintances 6 (of 10)Overall happiness with relationshipsIncrease (z=2.07; p