Support planning and brokerage. Final report from the support planning and brokerage demonstration project

Transcription

1 Independent Living Strategy Support planning and brokerage Final report from the support planning and brokerage demonstration project May 2011 Prepared by the project team Nick Campbell, Office for Disability Issues Rhys Cockerell, Office for Disability Issues Sue Porter, Norah Fry Research Centre, University of Bristol Steve Strong, NDTi Linda Ward, Independent consultant Val Williams, Norah Fry Research Centre, University of Bristol

2 Acknowledgements Thanks to all those in the user-led organisations and local authorities at the three project sites, for their help, ideas and involvement and to the service users, who shared their experiences with us.

3 Contents Acknowledgements...2 Contents...3 Foreword...4 Summary...6 Chapter 1 - Introduction and background...18 Chapter 2 What happened at the sites?...29 Chapter 3 - More choice and control? The process for service users...50 Chapter 4 After support planning: the outcomes for service users...66 Chapter 5 Issues and barriers for LAs and ULOs...75 Chapter 6 Wider messages and conclusions...92 Annex A - Project methods Annex B: Evidence Grid Annex C: What are the key characteristics of a user-led organisation? Annex D: References...117

4 Foreword Disabled people tell us that they face a number of barriers in exercising choice and control over their daily lives. This project was set up to demonstrate how some of the barriers within the traditional care management system can be addressed by user-led support planning and brokerage. I am happy to present the findings and lessons from this project which is in line with the wider personalisation agenda and Big Society values of empowering individuals and communities. The report highlights improved experience and outcomes for disabled people when they are assisted by User-led Organisations (ULOs) to develop their support plan; and highlights the importance disabled people place on peer support. This also goes beyond support planning and helps disabled people to build their confidence and to think more broadly about their goals/aspirations. Collaboration between local authorities and ULOs is vital in ensuring that disabled people have easy access to the right type of support at the time that is right for them. I am pleased that there is a real appetite amongst the local authorities involved in this project to continue to work with ULOs in this way. As the report shows, ULOs can help Local Authorities achieve their objectives e.g. increasing the take up of direct payments. The evidence in this report, backed up by the accompanying qualitative findings paper Your Life, Your Choice - can be used to influence change and to inform public authorities thinking about, and responses to the needs of disabled people. It acknowledges a need to increase the capacity of ULOs to deliver public services and steps are being taken to help address this need.

5 There is now a need to disseminate the project s findings across and beyond government to ensure that this learning is embedded to improve independent living choices, outcomes and equality for disabled people. Finally, I would like to thank everyone involved the sites, disabled people, project board and contractors in making this project a success. Tim Cooper, Director, Office for Disability Issues.

6 Summary Key Messages User led organisations (ULOs) were able to successfully deliver support planning and brokerage to a wide range of service users. They needed to adopt different approaches for people with different impairments and circumstances. Support planning was experienced by service users as more human when delivered by a ULO than by a Local Authority (LA), with less bureaucracy involved. People whose support plan was facilitated by a ULO were more likely to take their personal budget (PB) as a direct payment (DP) than those whose support plan was delivered by the LA. Service users were generally very happy with the PB system, which allowed them more choice and control. Clear information about all aspects of PBs was critical to maximise this. The peer support element of ULO-led support planning and brokerage was important to service users whose plan was ULO-led. Family carers regularly performed a key role in supporting their disabled family member. In most cases the PB system would not have worked without them. The development of the provider sector was seen as a priority; PBs were only useful if there were appropriate support services to buy. ULOs can deliver positive advantages in reaching local people and supporting them to negotiate LA systems. ULOs need investment in capacity building and involvement in strategic partnerships with LAs to achieve this.

7 Existing procurement systems present a significant barrier to the involvement of ULOs. LAs need to explore strategies to address this in order to optimise the contribution of ULOs. The involvement of ULOs in delivering services and support to disabled people can bring a number of benefits, at a time when LAs are considering how best to externalise certain functions. Introduction and background 1. The Support, Advocacy and Brokerage (SAB) project was set up to demonstrate how resources could be transferred from traditional, local authority care-management systems to user-led support planning and brokerage. The aim was to enable disabled people to have more choice and control over the support that they need. 2. The project formed part of the wider context of the personalisation of adult social care, and the increasing attention being paid to the role of non-statutory organisations, the voluntary and community sector and user led organisations in the reform of public services. 3. The project operated in three Action and Learning Sites, each comprising a Local Authority (LA) and a partner User Led Organisation (ULO). The three sites were: Essex - Essex County Council and ecdp (formerly Essex Coalition of Disabled People) Richmond - London Borough of Richmond and Richmond Users Independent Living Scheme (RUILS) Southampton - Southampton City Council and Southampton Centre for Independent Living (SCIL). 4. The project had three components: A Change Management Support Programme to the sites A Qualitative Research Programme to assess if, and how, user-led support planning and brokerage did

8 deliver greater choice, control and independence to disabled people A Quantitative Data Analysis Programme to compare and contrast the usage, costs and service user outcomes associated with the services provided by the ULOs and the LAs. The project was overseen by a national, cross-government Project Board and formally ran in the sites from April 2009 December What happened at the sites? 5. The funding awarded by the three LAs to their partner ULOs to undertake support planning and brokerage ranged from 38K to 150K per annum. 6. The ULOs in the three sites served a range of user groups: ecdp worked with all user groups in Essex, except adults with mental health support needs RUILS worked with all user groups in Richmond SCIL only worked with adults in Southampton whose primary impairments were sensory and physical (including older people) 7. All three ULOs undertook support planning as part of the project; RUILS and SCIL also provided brokerage in the form of ongoing work after the initial support plan had been validated. ecdp s approach was to provide an initial intensive intervention aimed at enabling the individual to develop the skills and confidence to negotiate the remainder of the support planning process themselves with little further input from the ULO. 8. None of the ULOs provided formal, independent advocacy as part of the project, but they did undertake informal generic advocacy on people s behalf in the course of the support planning and brokerage process.

9 Analysis of data from individual sites 9. Data was collected from each of the ULOs and LAs about the user groups served, the form in which people received their services, the time spent on support planning and brokerage and the costs involved. Direct comparisons between ULOs and LAs were not always possible owing to differences in the data collected. Other comparisons reflect the different approaches taken by the ULOs, different referral systems and the range of user groups served. 10. In Essex: Over 80 per cent of the LA s support plans were for older disabled people, compared to 20 per cent for those receiving support planning through ecdp. (This reflected the criteria for referral from LA to ULO for the project.) More than half of those who received LA-led support planning in Essex received an LA managed service. By contrast, all the disabled people developing their support plans with ecdp received direct payments. The average time taken by ecdp to complete a support plan was just under eleven hours. LA estimates (not based on direct, individual, data collection for the project) indicate that it took two to four hours for them to complete a support plan. These figures are not directly comparable and should be treated with caution. ecdp estimated the average unit cost to deliver one support plan as just over 550. (Comparable estimates were not available for the LA.) 11. In Richmond: Those receiving support planning via the ULO comprised far fewer older people (36 per cent) than those with LA-led support plans (78 per cent). Proportionately more people with learning disabilities (32 per cent ULO, compared with 9 per cent LA) and physical impairments (23 per cent ULO, compared with 12 per cent LA) received their support planning from the ULO than the LA. For the ULO, the mean amount of time taken for support planning was around 12 and a half hours.

10 Significantly less time was spent on brokerage which averaged just under eight hours. (No data was available on the time taken to complete support plans by the LA.) The estimated average cost of delivering a support plan and associated brokerage services at RUILS worked out at 1,150; the average cost for delivering just the support plan was 740. (Comparable estimates were not available for the LA.) 12. In Southampton: Ninety per cent of the support plans developed by SCIL were for people with physical impairments (including older people), while 92 per cent of LA-led support plans involved people with learning disabilities. All of those whose support plan was developed by the ULO elected to take at least some of their personal budget in the form of a direct payment. The average amount of time taken to complete support plans was just under five hours for SCIL, compared with six hours for the LA. The estimated average cost of an SCIL-led support plan, including brokerage, was 880. (A comparable figure for the LA was not available.) Comparison across sites 13. The three ULOs provided some broadly comparable data on the amount of time taken to complete a support plan and, where relevant, brokerage. The findings on time taken reflect the range of ULO led approaches and services offered and the different user groups served. 14. Generally the data shows that a higher proportion of people chose to take their service through a direct payment when the ULO led their support planning, than when the process was led by an LA. 15. Direct cost comparisons between ULOs and LAs were not possible, largely because of the difficulty in identifying LA staff time spent on support planning.

11 What were the experiences of service users? 16. The 80 participants in the qualitative study consisted of 41 people who had support plans facilitated by the ULO (referred to as the ULO group) and 39 by the LA (LA group). 17. Forty service users (spread evenly between ULO and LA groups) had family carers involved both in helping with their support planning and subsequently managing their budget. Support planning 18. Access to information was a key to people enjoying more choice and control in their lives. However, no one (in either group) had been given clear information at the outset about the whole route map of getting a PB. As a result, there was much confusion and misunderstanding about what they were and what was involved. 19. ULO participants had a firmer grip than their LA counterparts on what a support plan was and its purpose. 20. ULO participants were more likely to report what they felt to be an empathetic approach from their support planner. Those in the LA group made similarly positive comments only occasionally. Where this was the case, it was attributed to individual social services staff stepping outside their role. 21. Peer support was valued by those in the ULO group. Their comments on this included feeling that they were treated as equals, and that support planners who came from a disabled people s organisation were experts by experience. 22. People in the ULO group were far more likely than those in the LA group to know their indicative budget before engaging in support planning. This was felt to be an essential basis for planning.

12 23. Being offered choices about how to use their personal budget was important to people. ULO participants took up the option of a direct payment more often than those in the LA group. Some new customers in the LA group felt that a DP had been foisted on them, because of local authority cuts. 24. The amount of time spent on support planning visits appeared to be less important to people than the availability and efficiency of the support planner. In the LA group, participants were more likely to describe the support planning process as protracted. In the ULO group, the process was generally experienced as more efficient. 25. Different service users - those who were recently disabled, or had family carers involved, or had dementia, learning disabilities or basic skills needs - all had different needs and valued different styles of support planning which were sensitive to this. 26. People in both groups experienced long delays at the stage of validation of their personal budget. For the ULO group, team work between ULO support planners and LA staff seemed to be very important here. Experiences with LA finance departments were very poor for people in both groups. Putting the personal budget into action 27. The most valued aspect of PBs was the additional choice and control they gave, and the consequent increase in people s sense of their own self-determination. This was particularly marked for the new service users in the ULO group. 28. Brokerage (in the sense of signposting or recommendations on ways to put the support plan into practice) was appreciated by many participants, in both ULO and LA groups. However, since LA participants tended to lose contact with their named social worker, ongoing brokerage was not available to them, as it was for most of the ULO participants.

13 29. One of the most important aspects of putting a personal budget into action was the employment of personal assistants (PAs). PAs were said to be far more flexible and person-centred than previous carers from agencies. Those in the ULO group were more likely to have chosen to employ PAs, and to have employed friends or family. 30. Carers of people with complex or substantial needs often took on the management of a whole service for their son or daughter, and sometimes felt that they had no choice in the matter. This was true of carers in both LA and ULO groups. 31. Participants in the study commonly experienced periods of anxiety about what could be purchased with a PB, and about the closure of services, which they might want to use. People in the ULO group appreciated being able to go back to the ULO to ask for advice on managing their budget, and valued ongoing trouble-shooting from them. Those in the LA group were often left without any similar contact. 32. The feelings of being in control experienced by people through the support planning process seemed to lead to them feeling more in control in their lives generally. For some people in the ULO group, there was a clear tendency for the feelings of choice and control associated with the support planning process to persist after six months. Key issues for the LAs and ULOs 33. The system changes involved in the transfer of some support planning and brokerage functions from LA to ULO posed a number of challenges for both. Six key issues were identified.

14 Contracting services from ULOs 34. None of the ULOs had engaged in specific tendering processes to deliver support planning and brokerage services for this project initially, since the project was established in each site on the basis of an existing relationship between the LA and one specific ULO. Nonetheless, they all referred to significant problems and barriers in relation to LA procurement and tendering processes generally. 35. Uncertainty about their contracts for 2011 onwards, and thus the future of the support planning and brokerage services they delivered, became a pressing issue for ULOs in all three sites, as the project drew to a close at a time of expenditure cuts for LAs. The impact of LA systems on ULO-led support planning 36. One expectation behind transferring support planning to ULOs was that they would do this differently from the LA. But the ULOs in the project reported that it could be difficult not to get drawn into LA systems and cultures. There were concerns this might constrain the choices available to service users. Particular problems reported were: The impact of LA timescales on ULO-led support planning The LA Resource Allocation System for Personal Budgets The request by one LA for Disabled Living Allowance to be included in ULO-led support plans

15 Differences and difficulties between LAs and ULOs 37. The changing roles of the ULOs in this project were inevitably accompanied by teething problems and tensions. The cultural differences and other difficulties cited by ULOs and LAs included the following: Some ULO staff felt some LA staff had difficulty letting go of their control in the system Some concerns on the part of one ULO that their support plans were received more critically, and subjected to more revisions, than their LA-led equivalents Worries on the part of LA staff in another site that the ULO could spend too long on the support plans of some users, with the risk, as they saw it, of creating a dependency relationship Elsewhere, LA care managers were perceived as far more constrained in their attitude to support planning than their ULO equivalents - because they were employed by, and represented the LA and its more traditional approach. Data sharing between LA and ULO 38. A further set of challenges for partnership working between ULO and LA arose in the key area of inputting data relating to people s support plans and transferring it between ULO and LA. Incompatible IT systems and problems with data sharing often meant duplication of data inputting and associated delays and costs. A Common Assessment Framework and new government proposals to address data sharing issues could help address this issue.

16 The skills and qualifications of support planners and brokers and the development of peer support 39. ULO staff were reluctant to assume a need to introduce 'professionalised' roles, training and qualifications for support planners and brokers. They placed greater emphasis on the importance of values (such as the social model of disability) and peer support and ensuring resources were available to enable mentoring and time to reflect as a continuous way of supporting front line activity. 40. The principles and values that underpin the work of ULOs emphasise the potential role of peer activity in extending disabled people s choice and control in achieving independent living. The development of peer activity (using unpaid volunteers) in the support planning and brokerage processes has been patchy in the three sites to date, but: SCIL has a history of developing geographically based peer support groups, facilitated by ULO staff, which involves peer supporters developing skills to allow them to offer 1-1 support to other disabled users ecdp have piloted a peer support planner development programme, with four disabled support planners completing the programme in November 2010, and a further four in January It is hoped this will increase capacity for peer led support planning in the future. RUILS are committed to extending this area of their activity. Slow market growth and a limited choice of providers 41. By the end of the project the partner agencies in all three sites had all identified the limited choice of providers available to be an issue constraining the desired outcomes of support planning and brokerage for the individual. 42. The ULOs and LAs in the three sites had ideas and strategies to address all the issues and barriers they

17 confronted, some of which they were able to put into place as the project progressed. Conclusions 43. The involvement of ULOs in delivering support planning and brokerage to disabled people can bring a number of positive benefits. 44. Harnessing ULO qualities- through a trusting but business-like partnership - should enhance the capacity of LAs to deliver their duties in a cost-effective, responsive way. 45. On the basis of the evidence of this project, this may, in turn, increase the sense of choice and control experienced by service users.

18 Chapter 1 - Introduction and background The Support, Advocacy and Brokerage (SAB) project was set up to demonstrate how resources could be transferred from traditional, local authority care-management systems to user-led support, advocacy and brokerage. The aim was to enable disabled people to have more choice and control over the support that they need. The project sprang from a commitment in the (former administration) cross-government Independent Living Strategy (2008) 1 to show how to bring about, and embed, the changes this would require. 1.1 The project forms part of the wider context of the transformation and personalisation of adult social care, and the increasing attention being paid to the role of nonstatutory organisations, the voluntary and community sector and user led organisations in the reform of public services In November 2010 the Coalition government confirmed its commitment to personalisation, saying that Councils should: provide personal budgets for everyone eligible for ongoing social care, preferably as a direct payment, by April 2013; accelerate reforms to their assessment, care management, financial and information systems to support a personalised system that places a stronger emphasis on outcomes and gives all users choice over their services, whatever the setting The SAB project had three components: A Change Management Support Programme A Qualitative Research Programme 1 ODI, 2008,Independent living: a cross-government strategy about independent living for disabled people 2 McGuire,2010,Personalisation of health and social care and services to reduce re-offending 3 Cabinet Office, 2010, Mutual benefit. Giving people power over services 4 DH, 2010, A vision for adult social care: capable communities and active citizens

19 A Quantitative Data Analysis Programme Key features of each of these components are described below. Annex A gives more detail on the methods used in each. 1.4 The project was overseen by a national crossgovernment Project Board. It formally started in April 2009 and ended in December 2010 (though some activities started before, and continued, after these dates). The change management support programme 1.5 The change management support programme was set up to: Provide change management support in the three action and learning sites within the SAB project Ensure local cooperation from the sites with both qualitative and quantitative research and analysis programmes Commission additional consultancy support where appropriate, so sites could deliver on their plans Facilitate the involvement of disabled people and their organisations in the project 1.6 The change management support programme was led by a former member of the Personalisation Team at the Department of Health (previously CSIP - the Care Services Improvement Partnership). The qualitative research programme 1.7 The qualitative research was set up to document, and understand, the mechanisms which support disabled people to achieve greater choice and control in their lives - a key outcome of independent living - with a specific focus on people moving on to personal budgets. 1.8 The research was undertaken by the Norah Fry Research Centre at the University of Bristol and aimed to:

20 Assess whether, and if so, in what ways, a user-led support planning and brokerage model did deliver greater choice, control and independence for disabled people than the LA equivalent Focus on impact assessment, by gathering direct evidence from people using support, advocacy and brokerage systems provided a) by a user-led organisation (ULO) and b) by local authority (LA) social services Explore service users satisfaction with the processes involved in support, advocacy and brokerage, and with the outcomes in their own lives. The quantitative research programme 1.9 The quantitative analysis set out to compare and contrast usage, costs and service user outcomes associated with the support planning and brokerage services provided by the user led organisations and those provided by the local authorities. The evaluation was undertaken by analysts at the ODI, drawing on data collected at the sites. (Constraints on the data available meant that a more limited range of information was ultimately collated. Further details are given in Annex A and Chapter 2.) The action and learning sites 1.10 Three action and learning sites were selected for the project each comprising a partnership between a local authority and a user led organisation. The sites had been previously identified as potential candidates for inclusion by the scoping study undertaken for ODI by Risk Solutions The sites were selected because they: Were keen to participate, at both senior and junior levels in the LA 5 Risk Solutions, 2008,Independent living action and learning sites scoping study; report for the ODI

21 Had one or more strong, active, user-led organisation locally Already contracted some services to user-led organisations Were actively thinking about person-centred planning Had a significant number of individual/personal budget holders Had 3 stars in the CSCI Performance Ratings for Adult Social Services in England 2007 or 2 stars and was improving On the basis of these criteria, and following the Risk Solutions report, three sites were selected: Essex (a county council); Richmond (an outer London Borough) and Southampton (a city council). An overview of key characteristics of each site follows, drawing on information supplied for the original Risk Solutions report, updated as necessary. Essex 1.13 Essex County Council: Covers 12 district councils and five Primary Care Trusts. Provided about 30,000 people with adult social care, with new assessments per day at the time of the Risk Solutions report people were receiving direct payments at that time, while 50 people had individual budgets (from the government s Individual Budget pilot programme) 6. The LA was committed to working in partnership with ULOs to provide peer led support planning 1.14 Essex Coalition of Disabled People (now ecdp) ecdp, the ULO selected to work on this project, provided a range of support services, including advice on direct payment issues to both users and local 6 A cross-government initiative led by the Department of Health working closely with the Department for Work and Pensions, and Communities and Local Government. The pilot was conducted over two years, , involving 13 local authorities.

22 authority staff and payroll and account management services to cash payment users. ecdp s lead person on the SAB project was seconded to the ULO from Essex County Council in 2009 to help ecdp further develop its implementation of a broad range of self directed support services. Richmond 1.15 Richmond Borough Council: An outer London Borough with approximately 5,300 people using adult social care. The LA s aim, in 2008 (the time of the Risk Solutions report) was to get all those eligible for adult social care on to self-directed support plans in the next years. The council wanted 70% of these plans to be prepared and reviewed by the LA, with the balance (ie 30%) done by local ULOs Richmond Users Independent Living Scheme (RUILS): RUILS, the partner ULO in Richmond, leads a consortium of local charitable/voluntary groups who provide a range of services to disabled people. Together these make up the Richmond Independent Brokerage Service (RIBS). The three lead partners in the consortium at the start of the project were RUILS, Advocacy Partners and Age Concern. Of these three, only RUILs is user led. 7 The borough council set up a 12 month contract with RIBS at the end of 2007 to provide support for selfdirected support planning and brokerage. RUILS held the contract on behalf of the consortium, but did not have a paid support broker itself until April Southampton 1.17 Southampton City Council: Southampton City Council had around 3000 clients, of whom about 320 received direct payments in At 7 See paras for more on the definition of a user-led organisation

23 that time the LA was just beginning to implement personal budgets. At the time of the Risk Solutions report the LA was evaluating how much more of its remaining services to disabled people could be relocated externally to the third sector. It envisaged placing self-directed support planning and brokerage (in addition to direct payment support) with the third sector Southampton Centre for Independent Living (SCIL): SCIL, the partner ULO for this project, is the largest ULO in Southampton. It had a contract with the City Council at the time of the Risk Solutions report to provide advice and guidance on direct payments More details on how support planning and brokerage were delivered at the three sites are given in Chapter 2. The project s aims 1.20 To demonstrate how changes in traditional caremanagement and the use of user-led support, advocacy and brokerage can enable people to have more choice and control over the support they need To provide evidence on the outcomes, costs and benefits of this approach. Terms and definitions 1.22 Most of the key terms used to describe the project user-led ; support [planning] ; advocacy ; brokerage - are subject to a range of interpretations. As a general rule the definitions used by the project follow those outlined in other work by and for ODI 8, DH 9 and the Putting People First 8 Ward,L and Strong,S, 2007, Advocacy, brokerage and support, Report for ODI

24 consortium 10, as part of the government s agenda to transform adult social care Personal budget: A personal budget is an allocation of money from the local authority, given to a person on the basis of an assessment by the LA, in order to meet their assessed needs for a given period of time. The user can take their personal budget as a direct payment (see below) or leave the LA with the responsibility for commissioning the relevant services. Alternatively they can take their PB as a combination of the two Direct Payment: With a direct payment an individual elects to receive their personal budget as a cash allocation (into a bank or similar account). They take on the responsibility for making the necessary arrangements to meet those aspects of their support plan for which the money has been made available. Some people choose to manage these activities (like receiving the payment, keeping records, employing and managing staff) themselves, with support as required. Others delegate some or all of the management of the money and associated activities to a third party for example, a relative, friend or paid agent, or an organisation, like a support service or Centre for Independent Living (or a combination of these) User Led Organisations (ULOs): Improving the Life Chances of Disabled People 11 set out the government s commitment that there should be a user led organisation, modelled on Centres for Independent Living, in every locality by The Department of Health led on this commitment, with support from ODI, and its ULO Project established, in partnership with disabled people, a set of ULO Design Criteria. 12 These set out the key principles and features characteristic of ULOs involved in delivering services. This list is reproduced in Annex C(i) for information. 9 DH, 2008, Managing the money: resource deployment options for personal budgets 10 IDeA, ADASS, LGA, 2009: Making progress with Putting People First: Selfdirected support 11 Prime Minister s Strategy Unit, 2005, Improving the Life Chances of Disabled People 12 DH, 2007, User-Led Organisation Design Criteria Summary

25 1.26 Richmond was the only one of the three sites where non-ulo agencies were involved in delivering support planning and brokerage as part of this project. The implications of this were considered by the Project s national Board, in relation to the ULO Design Criteria mentioned above. As a result of these deliberations a list of those characteristics of a ULO which are most critical specifically for the delivery of support planning and brokerage was prepared, and is set out in Annex C (ii) The kind of added values that ULOs bring to support planning and other service delivery processes, are outlined in the box below. The added value of User-Led Organisations 13 As organisations run by disabled people, ULOs operate from a value base which encompasses the social model of disability and the key principles of independent living: choice and control. Their added value arises from the unique combination of: 1. Their deep understanding of the issues and barriers people face and how to empower them 2. Their lived experience 3. Their ability to translate disabled people s direct lived experiences into a legitimate, collective, voice - to influence service commissioners and a range of other organisations to effect real social change to enhance people s everyday lives 4. Their provision of peer-led services within the voluntary and community sector - because of their real understanding of the lived experiences of disabled people, ULOs are able to provide a range of services that are both shaped and delivered by disabled people 5. The relative absence of imbalance of power in the relationship between ULOs and disabled people (in comparison with statutory services) 6. Their ability to offer disabled people pathways to social capital (one of the elements of personalisation), both formally and informally, through their delivery models. 13 Added value drafted for the project by ecdp

26 7. The considerable evidence that better outcomes are achieved by disabled people through peer to peer support*. ULOs share key characteristics of other third sector organisations in that they can: 1. Work across policy boundaries 2. Be nimble and responsive to market need 3. Support people who self-fund and those whose needs fall above and below the Fair Access to Care Services threshold Support: The support needed by some disabled people in order to exercise choice and control over their lives and the assistance they need to do this for example, personal assistance and any help needed to organise this, for example, through Direct Payments Support Schemes run by Centres for Independent Living Peer support: The defining characteristic of peer support is that it refers to relationships and interactions between people who are peers Peer support has always been a key aspect of disabled people s organisations, since disabled people are seen as the experts on the barriers to independent living that they face, and possible strategies for overcoming them Peer support can encompass a range of methods, including the following: Listening, sharing first hand knowledge about living with a disability, assist others in making informed, independent choices, share experience, information and strategies, navigate attitudes and values that impede personal growth, offer solutions to barriers, obstacles and problems The availability of peer support is a key feature of the drive to transform adult social care in order to give service users more choice and control in how their individual support needs are met NCIL, 2008, Peer support and personalisation 15 Ibid

27 1.33 The term peer support can be used to describe both user-led support planning (where the ULO support planner or broker is paid) and unpaid peer, or volunteer, activity undertaken by (disabled) people within or beyond ULOs. Where unpaid peer support or activity (as distinct from ULO led support planning) is the focus of discussion in this report, this is made clear Support Planning: The process of a person developing a plan for the support they need to live their life the way they want, including how to spend their personal budget Brokerage: or support brokerage, is the help or support that people may need to work out how best they can achieve the goals of independent living set out in their support plan, the support they need to make them happen and thus how to spend their personal budget Advocacy: defined as taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. 18 There are several different types of advocacy: 19 Citizen advocacy: where an independent person (usually a volunteer) supports a disabled person to speak up for themselves, or, if they are unable to do this, represents them and communicates their needs and wishes. Self-advocacy: where people speak up for themselves often as a result of coming together in groups. Peer advocacy: where someone with similar experiences supports another person to make their views known and acted upon. Professional advocacy: where someone is supported by a paid advocate, employed by a service like the Independent Mental Capacity Advocate Service to express their views and make choices. 16 DH, 2009, Good practice in support planning and brokerage 17 Ibid Disability Rights Commision,2006, Delivering the choice and voice agenda: the role of independent advocacy services

28 1.37 Although the SAB demonstration project had advocacy in its formal title, the primary focus of the project was on the transfer of traditional care management functions from the LA to user led organisations. The project s focus, therefore, was on support planning and brokerage. In practice this meant that none of the sites or partner ULOs within them actually offered formal independent advocacy as part of their contracted work for the project, although they did undertake informal generic advocacy on behalf of the users with whom they were involved in the course of the support planning and brokerage process. More details on how support planning and brokerage were delivered at the three sites are given in the next chapter.

29 Chapter 2 What happened at the sites? The Change Management Support Programme As part of the Change Management Support Programme for the project, initial visits to all three sites took place in November and December 2008, involving representatives from both local authority and user led organisation in each area. At these meetings, the user groups to be covered by the project in each site were discussed, along with the establishment of a local project board (with representatives of all relevant local agencies and stakeholders) to oversee the project s development locally. 2.1 A project plan was developed at each site by early 2009 to agree: The membership and terms of reference of the project board Ways of ensuring ' co-production' in the project (that is working in partnership with disabled people/the ULO ) A local delivery plan Identification of connections/dependencies with other relevant issues and developments locally Decision making processes for the project Underpinning principles for the project Proposed project outcomes 2.2 An initial planning event for the partner agencies in each site was subsequently organised, facilitated by an external consultant. These covered: Desired project outcomes in each site A self-assessment of the current situation in each locality Project management arrangements The specific focus in each site in relation to 'user groups' covered and care management functions included Data collection and qualitative research issues (with input from the quantitative and qualitative research teams)

30 2.3 Discussions took place at the sites at an early stage to identify the most effective support that could be offered by the Change Management Team to assist the work of the project at a local level. It was agreed that, in addition to regular attendance at local Project Board meetings, it would be useful if the team could: Arrange events where staff from the three sites could meet together Consider setting up meetings/workshops on specific issues Create an e-based (later web-based) facility to make information and learning available between the three sites and other project stakeholders. 2.4 As a result, a number of events/workshops were organised for staff. Three cross-site meetings - for ULO and LA staff from all three sites - aimed to review progress and share ideas and experiences from working on the project. A series of four meetings was also arranged specifically for ULO staff directly involved in delivering face to face support planning and brokerage, to enable them to reflect on emerging practice and learn from 'best practice' thinking from other areas. 2.5 In addition to the direct support offered by the Change Management Team and these events, it was also possible to offer resources to each of the ULOs on two occasions: An initial 2k to assist towards their time and resources in the setting up phase of the project Up to 5k to support specific activity contributing to their general capacity to play an active role in improving opportunities for local people to achieve Independent Living. 2.6 These resources were made available on condition that they did not subsidise' the work the ULO was already contracted to carry out on the project but furthered additional relevant activities to increase their capacity.

31 What was commissioned at the sites? The contracts 2.7 Funding awarded by local authorities to the ULOs in each site to undertake the support planning and brokerage associated with the project was as follows: Essex: 50k in 2009/10 (for up to 500 validated support plans); 146k in 2010/11 (for up to 300 submitted support plans) 20. Richmond: 150k per annum for 2 years 21 Southampton: 38k per annum for 2 years 22 Which user groups were involved at each site? 2.8 The three ULOs were commissioned to deliver support planning and brokerage to the following user groups, as part of this project: User groups Essex (ecdp) included People with physical and sensory impairments People with learning difficulties Older disabled people Older people with mental health support needs Richmond (RUILS) included All service user groups Southampton (SCIL) included People with physical and sensory impairments Once the project was underway in Essex it was recognised that the targets set for the first year of operation were unrealistic; hence the lower targets for 2010/11, based on experience in the first year 21 This funding also covered a development manager, a helpline and other activities 22 The lower contract value for Southampton reflects the smaller number of support plans (see paragraph 2.54) 23 People with mental health support needs in Southampton were able to get their support from other local organisations

32 Which care management functions did the ULOs undertake at each site? 2.9 The different care management functions transferred to the ULOs in by the LA in the three sites were as follows: Essex site: Support planning only Richmond site: Support planning and brokerage Southampton site: Support planning and advocacy The fact that none of the sites focussed on 'formal', independent, advocacy was identified as a potential issue for the project early on (given the project s title) and is discussed further in Section 5. How did the ULOs deliver support planning and brokerage? 2.11 The three ULOs adopted different approaches to the delivery of support planning and brokerage in their area, as summarised below. Essex 2.12 From the outset ecdp worked to what they called an empowerment model. This involved a brief but intensive intervention aimed at enabling the individual to develop the skills and confidence to negotiate the remainder of the support planning process themselves in most cases, without further face to face input from ecdp. (Ongoing support is available to people via phone and as they finalise the content of their support plan themselves. ecdp support then includes double-checking that that there is sufficient information in it to allow the LA to make its decision At the outset, ecdp had one full time support planner working on the project. This had increased to 1.8 full time equivalent by October (At one stage, three support planners were employed on the project; this was not considered viable in the longer term because of concerns about sustainability and uncertainties about future contracts.

33 2.14 Initially, referrals for support planning through ecdp was dependent on practitioners offering people the choice. When it became clear that referrals were low, the LA decided to take positive action to change practice and get more people referred for independent support planning. The criteria for referrals were changed. The default became referrals to ecdp for independent support planning for all people who: had indicative budgets of 7k plus, and were new or fairly new social care clients, and were under 65 unless they preferred to stay with LA support planning. Other people who did not meet these criteria could also opt for independent support planning through ecdp if they wanted this. Richmond 2.15 By contrast, RUILS, through its partner agencies, worked with individuals at various stages in the process of developing their support plan. They were then available to make sure that the resource allocation process (to agree funding) went well and the support plan was actually put in place There were two full time staff working as support brokers (writing and setting up support plans) in Richmond - one broker each in the two partner organisations (Age Concern and Advocacy Partners). In April 2010 a third broker came into post in the RUILS (the only ULO involved). All three brokers delivered support planning and brokerage in the project on RUILS behalf. Southampton 2.17 SCIL also worked with people through the whole support planning process. Where appropriate, they would also link the individual up with other relevant activities undertaken by SCIL, which were not part of the SAB project; for example, the direct payments support scheme they operated.

34 2.18 SCIL employed one support planner to work on the project throughout its duration. Who used ULO and LA support planning and brokerage services? 2.19 Data was collected from the ULOs and LAs in all three sites on the support plans produced by each. This data provided the following information: the user groups with whom the ULO and LA worked the form in which people received their services the time taken to complete support plans some limited information on the costs associated with producing support plans. (Further details on the data collection process are set out in Annex A.) 2.20 Only data captured by existing systems at the sites was collected for the project. As a result, a robust comparison of activity across the sites is not possible, since the available data varies. The analysis that follows focuses more, therefore, on comparisons within sites (in particular, any differences between ULO-led and LA-led support plans in the same area) than between sites, though some tentative comparisons between sites are drawn at the end of the chapter For all sites we have been able to get some information on the costs to deliver support planning and brokerage (which was not formally undertaken by ecdp) but we have not been able to do this on a consistent basis between ULOs and local authorities. For all the ULOs we have been able to identify the total resources that have been directly allocated to this project and we have a record of number of support plans produced and time taken; this allows for a broad definition of unit costs for these activities. Given the diverse activities of adult social care department s it has not been possible to isolate the costs and activities in the same way, so we have not reported a figure for local authorities. In a number of cases we could report a narrow definition of unit costs (based just on direct staff costs), which could artificially

35 make the ULOs work look expensive as it wouldn t include overheads An outline of the broader picture on direct payments and personal budgets follows, in order to set the subsequent site data in context. Direct payments and personal budgets 2.23 The way in which individuals elect to receive social care services can be seen as one indicator of how much choice and control they have over their support. From this perspective, people can be said to have more choice and control over their social care support if they receive a direct payment or personal budget, where the individual has an upfront allocation of resources, an agreed support plan and a choice on how these resources are delivered, which includes the option of taking a direct payment Statistics for show the number of social care users who accessed social care services via direct payments and personal budgets in the three sites as compared with the figures for England overall In England overall, only six per cent of people accessing social care services received a direct payment in 2008/9. For people over 65 the corresponding figure was just under four per cent In the three sites involved in this project, Richmond and Essex had a slighter higher prevalence of direct payment users than the country as a whole in 2008/9 (before the project began). The figure for Southampton was around the national average, as the table below indicates: