Supporting the Development of User- Led Organisations in the North West 2008- 2010 Breakthrough UK LTD April 2009 Contents 1. Context/ Background 1.1 Introduction 1.2 Background 1.3 Terminology 1.4 The ULO design criteria 1.5 Aim of the study 2. Abstract/ Summary of findings & recommendations 2.1 Abstract 2.2 Summary of findings Local Authorities 2.3 Summary of findings ULOs 2.4 Recommendations 3. Methodology: 3.1 Gathering Information on the Local Authority Perspective 3.2 Gathering Information on the User-Led Organisation Perspective 3.3 Identifying Key Themes 3.4 Drawing on other work 4. Findings: 4.1 The current picture Local Authorities (LAs) 4.2 The current picture ULOs 4.3 Developmental and Support Priorities LAs 4.4 Developmental and Support Priorities ULOs 4.5 Preston DISC 4.6 Step by Step 5. Recommendations 6. Conclusion 7. Appendices 7.1 Blank Questionnaire – which includes 21 ULO design criteria. 7.2 List of ULOs who returned questionnaires. 7.3 List of ULOs who attended regional meetings. 7.4 Analysis of returned questionnaires 7.5 Themes from regional meetings. 1. Context and Background: 1.1 Introduction The “Improving the Life Chances of Disabled People”1 report of the Prime Minister’s Strategy Unit, January 1995, had a key recommendation (4.3) which said that By 2010 each locality (defined as that area covered by a Council with social services responsibilities) should have a user-led organisation modelled on existing CILs, (p. 130) The Department of Health has the policy lead in overseeing implementation of recommendation 4.3 and has just begun a second wave of development funding of User Led Organisations (ULOs) in England, having almost completed the first round of funding by supporting the development of Action Learning Sites, enabling ULOs to learn from each other. Nevertheless, many gaps remain in both the location, and the capacity of ULOs. Since the North West has been recognised as a region with an uneven spread of ULOs this work has been commissioned to map existing activity and identify the key supports that will facilitate the development and sustainability of existing and new ULOs. 1.2 Background In the last thirty years the development of the concept of independent living and autonomy for disabled people has moved rapidly, as have ideas on how to achieve this independence. This growth and expansion of ideas and activities has brought us to a position where real wins are possible in a society which once confined most disabled people to institutions. Such developments have only been possible with the direct involvement of, and control by, disabled people. In 1972 a letter to the Guardian from a resident in an institution, Paul Hunt, led directly to the establishment of the Union of Physically Impaired Against Segregation (UPIAS)2, a group of disabled people who challenged the received wisdom that impairment inevitably brought dependence and a need for “charitable care”. Through their discussions the social model of disability3 was developed and has since been the cornerstone of the growth of the disabled people’s movement. Basically, the social model says that it is the barriers created by society which prevent disabled people being full and active members of society, not the nature of a person’s impairment or condition. 1981, the International Year of Disabled People, saw the establishment of the British Council of Organisations of Disabled People (BCODP), now the UK Disabled People’s Council (UKDPC). BCODP was a national organisation from which there came many important initiatives. Two were key to the emerging independent living concept: a) The BCODP Research Group supported the writing and publishing of “Disabled People in Britain: the Case for Anti Discrimination Legislation” (Colin Barnes, 1991)4, a seminal piece of work which formed the evidential basis to lobby for legislation around disability. After many stormy parliamentary manoeuvres and debates this led eventually to the Disability Discrimination Act in 1995, b) The BCODP Independent Living Subgroup led eventually to the establishment of the National Centre for Independent Living (April, 2003) and promoted the concept of Direct Payments to disabled people so that they could be in charge of their own support. Throughout the eighties there was rapid growth of “Centres for Independent Living”, with Derbyshire and Hampshire being the first two: however, as the nineties approached the traditional areas of work that the CILs had focussed on – supporting independence, and later, direct payments – were increasingly contracted to large national charities and CILs began, and continue to close. Published in January 2005, “Improving the Life Chances of Disabled People” (citation) was felt by many disabled people to be the most helpful policy document on disability to be produced by the government. It led directly to the establishment of the Office for Disability Issues and the Independent Living Strategy, but key to this mapping work it led to a programme of recognition and support for User Led Organisations via recommendation 4.3. (see above). This recommendation 4.3 was that every local authority with a social services function would have a ULO in place by 2010: this mapping work aims to assess the state of readiness of ULOS in the North West and asks them to assess the key challenges that they face in terms of developing and meeting the criteria. In addition, this report outlines responses from NW Local Authorities. 1.3 Definitions: It is important to consider the words we use, and what we take them to mean, so that we are not talking at cross purposes. In this report the following terms are used, with the meanings given: ? Action Learning Sites (ALSs): each ALS keeps a record of what it learns as it develops in line with the ULO criteria: this learning is then shared with other ULOs who are acting as ALSs. Some of the ALSs may also have an active mentoring / support role with one other organisation. ? BASIS : a 3 year project, starting in April 2009, to improve opportunities for disabled people to influence policy, service provision, and support by ensuring that the full range of Voluntary and Community Sector disability organisations across the North West are provided with consistently good and accessible infrastructure services through the development and promotion of a North West Disability Infrastructure Partnership consisting of 6 sub-regional partners. ? BME disabled people: disabled people who belong to a black or minority ethnic community ? Centres for Independent Living (CILs): ”grassroots organisations run and controlled by disabled people”5 ? Carer: an unpaid / family carer, someone who gives support and/or care to a disabled person, who may or may not be a family member ? Paid carer: someone who is paid to give care and/or support to a disabled person ? DH is used throughout this report to refer to the Department of Health ? Disabled people: those who may have a physical, intellectual or sensory impairment or long term condition. ? The social model of disability: a way of explaining that disabled people (see above) are disadvantaged, and often discriminated against, by the way society is built and organised. ? Disability LIB – is a capacity building and support consortium of the following organisations; Alliance for Inclusive Education, Disability Awareness in Action, Equalities National Council, People First, Preston DISC, Scope and UK Disabled People’s Council. As part of this programme - Preston DISC provide tailored organisational development support to disabled people’s organisations in Lancashire, Blackpool & Cumbria. ? Experts by Experience : this phrase is used to describe people who’s knowledge about social care services comes directly from using social care services. The Experts by Experience programme. ? Local Involvement Networks (LINks) : are the replacement for Patient and Public Involvement Forums LINks aim to give citizens a stronger voice in how their health and social care services are delivered. Run by local individuals and groups and independently supported - the role of LINks is to find out what people want, monitor local services and to use their powers to hold them to account. ? Peer-support based: refers to individuals or groups being supported by their peers, that is, people like themselves. For example, disabled people being supported by disabled people. ? User led organisation (ULO) : one which meets the 21 ULO Design Criteria (Ref – DH) 1.4 The “ULO Design Criteria”: Supporting the development and growth - from the “top down” – of ULOs was always going to be a challenge, given that they are meant to emulate existing CILs, which traditionally grew from the “bottom up”. The use of “Action Learning Sites” to support ULO development has gone some way to begin addressing this. The difference between a ULO and a CIL has not always been clear, and this remains unresolved. Original CILs were controlled by disabled people, whilst ULOs are – according to the DH criteria – controlled by a diverse range of service users, including unpaid carers. There are recognised “gaps” in this diversity, with few ULOs achieving a broad mix: people with learning disabilities, older people, the deaf community, BME disabled people, users of the mental health system are often involved marginally with ULOs, or not at all. Conversely, many existing organisations are “single issue” or “impairment specific”, such as People First. Such characteristics underline the fact that disabled people – and other service users – are not an homogenous group: rather there are various movements and communities, which are not always at one with each other and whose support needs can be very different. Furthermore, the public sector shift towards personalisation, self assessment and peer support brings a practical and cultural challenge to the professionals who have traditionally steered and dealt with such matters, and who now have to support service users to take on that control. These matters are important because they refer to the 21 ULO Design Criteria, upon which the self-assessment questionnaire for this mapping were based (Appendix 7.1). Whilst the findings give a clear indication of the major challenges that ULOs in the North West have identified, it is important to note that the mapping was reliant on an organisations’ understanding of the Design Criteria : some of the additional development needs identified by organisations described elements within the design critieria, which suggests that there may not be a common understanding of all the criteria. 1.5 The Aim of the Study: This study was commissioned by the Department of Heath in January 2009: to “promote the linkages with Local Authorities and to support ULO’s that are not funded as Action Learning Sites to help them meet the design criteria”. Activity and outputs required were to: a) Map current activity and establish current progress made by ULO’s in the region to meet the 21 Design Criteria b) Identify the support needs for ULO’s across the region c) Provide an opportunity for Local Authorities and ULO’s to come together to share issues and solutions and the support needs of ULOs d) Produce a written report setting out ULO regional activity and the links between user-led capacity work, Citizen Leader activity , Experts by Experience and the emerging role of the LINks in the region. 2. Abstract, summary of findings, and recommendations: 2.1. Abstract: This mapping exercise of ULOs in the North West has been commissioned by the Department of Health in order to better understand the existing activity and identify the key challenges, and supports that will facilitate the development and sustainability of existing and new ULOs. 2.2. Summary of Findings: Local Authorities – 19/ 22 Local Authorities responded to the questionnaire: 1. 84% said they will achieve the 2010 milestone to have a user-led organisation in their area that meets the DH design criteria. 2. 58% said they have allocated specific funding towards meeting the 2010 target. 3. There is a mixed picture of activity amongst Local Authorities towards meeting the 2010 target. 4. The majority want to share best practice / study successful ULOs and discuss the role of CIL’s. 5. Local Authorities want to be supported to promote the value of ULOs, particularly in developing commissioning and transforming social care. 6. One said they require flexibility on the definition of a ULO and the geographical boundary. 2.3. Summary of Findings: ULOs - 1. 66% of respondents are aware of the ULO Action Learning Sites, yet only 48% (13/27) of organisations are aware of Disability LiB and the capacity building support it offers. 2. 66% (18/27) had been contacted by their Local Authority in relation to ULO work whilst 9 (33%) had not. 3. 74% of organisations that responded are in contact with / involved with LINk’s whilst only 37% are involved in the Expert by Experience programme. 4. Being accountable to constituents and ensuring they have a full and active role in decision making received a number of negative responses. 5. Although 70% of respondents said their organisation covers all disabled people, carers and other people who use support, there was a spread of organisations who said that they didn’t understand this criterion. 6. Only 59% have a minimum of 75% of voting members of their management board drawn from the organisation’s constituency. 7. Only 33% of the organisations feel they have achieved financial sustainability. 8. 55 % work with commissioners to improve commissioning and procurement, although 33% say they are working towards it. 9. There was a mixed picture of having paid employees who reflect the organisations constituents with a particularly low report from GMR and Cheshire. 10. In Merseyside only half (5) of the organisations said they were peer support based. 11. 6 of the 10 organisations in Merseyside recognised carers have their own needs; recognition was higher in other regions. 2.4. Recommendations: the detailed recommendations begin on page 22: they cover the following - a) Developing a Regional Steering Group b) Financial sustainability: local commissioning is clearly key to the long term financial sustainability of ULOs, both in terms of shaping the market and developing the capacity of ULOs as providers c) Awareness and support to Commissioners : whilst this was not a direct need identified by the ULOs, nevertheless it was clear from responses that there is a great developmental need for ensuring that commissioners are at the leading edge of this work, and feel empowered to support the capacity, growth and effectiveness of ULOs. It is clear that the sustainability of ULOs, both financially and operationally, depends on the knowledge and practices of commissioners. d) Support to ULOs to develop a knowledge base on national policies and challenges. Emerging, and often established, ULOs find it a challenge to keep abreast of a rapidly changing environment: support to develop more effective ways of receiving and sharing knowledge is vital. e) Networking and partnerships, including peer support: NW ULOs set a high value on networking and partnerships: a package of measures to address the difficulties should be a relatively low cost value. f) Engagement with, and accountability to, constituents: many NW ULOs struggle with understanding this, let alone delivering it. Indeed, it is a challenge for any organisation. This must be seen as an organic process, which needs ongoing support if it is to deliver. g) Communications: to ensure ULOs are up to date with trends and developments which are significant to them and to improve communications between ULOs and relevant agencies and their programmes. h) Other: some matters arose during the mapping which were significant and are worthy of mention - i) Some respondents felt there was a need for clarity regarding User Led Organisations, CILs, and Disabled People’s Organisations. (section 1.4.) The DH could usefully make the distinction. ii) Many did not understand all the ULO criteria, or did not think them all relevant, with one LA deciding not to use them. The ULO criteria could be reviewed as part of the recommended programme of organisational advocacy, or through the recommended sub-regional meetings. (4.3.c) 3. Methodology: 3.1 Gathering Information on the Local Authority Perspective The North West Joint Improvement Partnership conducted a survey of local authorities across the region, receiving 19 out of a possible 22 responses. These were collated and have been included in the analysis. In addition to the information gathered from the survey, an event was planned for 23rd March to give local authorities the chance to come together and discuss their successes and challenges in working towards achieving recommendation 4.3 (supporting the development of a ULO in their authority). However, the event was subsequently cancelled one week before it was scheduled to take place as only 9 out of a possible 22 local authorities had signed up to attend. During planning for the event it emerged that workshops organised by an independent organisation were taking place in the same month throughout the region. These events were engaging with local authorities on the personalisation and user-led organisations agendas. This unfortunate timing seems to have caused confusion and had an impact on engagement with the local authority event planned for this study, resulting in its cancellation. 3.2 Gathering Information on the User-Led Organisations’ Perspective a) The Survey: With support from the Project Consultant, Breakthrough UK produced a questionnaire in standard and easy read formats to send out to user-led organisations in the region. The questionnaire was designed to: * Gauge current activity and establish current progress made against the design criteria by user-led organisations in the region; and * Identify the support needs of user-led organisations across the region. The questionnaire was sent out to organisations which were: - Identified by the surveyed local authorities as user-led organisations they were working with - Identified by ULOs contacted above - ULOs already known to Breakthrough UK - Breakthrough UK’s Action Learning Site project partner organisations. The questionnaire was also: - Advertised and made available as a download on the Breakthrough UK website - Advertised in the ‘Information Breakthrough’ monthly e-bulletin. A structured approach was used in sending out the ULO questionnaires. Wherever possible, Breakthrough UK staff telephoned each organisation first to explain the purpose of the questionnaire and to secure a commitment to filling it in. The survey was emailed or posted, together with an invitation to attend a sub regional meeting and target dates for returns (set at one week from sending.) Questionnaires were sent out by sub-region: Greater Manchester and Cheshire, Lancashire and Cumbria and Merseyside. Follow up calls and emails went out to those organisations which did not return the questionnaire by the target date. In total, 59 questionnaires were sent out directly by Breakthrough UK and 27 completed surveys were returned by the deadline. A list of organisations who returned the survey is attached at Appendix 7.2. b) Sub-regional meetings: Three sub-regional meetings were organised for Greater Manchester and Cheshire, Lancashire and Cumbria, and Merseyside. Meetings were held in accessible venues around the region so that more in-depth feedback on progress and issues could be gathered. These meetings were promoted by Breakthrough UK as part of the survey process. The Project Consultant facilitated the meetings and Breakthrough UK provided note-takers. Organisation of the meetings was shared between the Joint Improvement Network and Breakthrough UK. A list of the organisations which attended each meeting can be found in Appendix 7.3. 3.3 Identifying Key Themes: Breakthrough UK collated all the information gathered through survey activity and analysed it to identify: * Common themes * Sub-regional variations * Issues, challenges and gaps * The development priorities of user-led organisations The discussions and notes from the three sub-regional ULO meetings were also analysed to identify key messages, themes and developmental needs. 3.4 Drawing on Other Work: ? Preston DISC, which is one of the Disability Lib partners, (see definitions section 1.3) agreed to supply information from a survey they had conducted as part of developing their support plan for ULO’s in Lancashire and Cumbria. Preston DISC was one of only three responding organisations from Lancashire & Cumbria for this study. Therefore, results of the Preston DISC survey were considered within the analysis and contributed to the recommendations of this report. * Step by Step, who organised four workshops on personalisation and user-led organisations around the region in March 09, also agreed to make their key learning from the events available for inclusion in this report. These workshops were attended by both user-led organisations and local authorities. The outcomes from these meetings have also broadly contributed to the findings and analysis of this report. 3.5. Additional Research: Breakthrough UK conducted background research on: * Disability Lib * Experts by Experience * LINks. 4. Findings: The findings have been split into two distinct groups, firstly the current picture, and secondly the developmental / support needs, of ULO’s and Local Authorities in the region. Detailed analysis of the findings from each method have been included as Appendices 7.4 & 7.5. 4.1 The Current Picture - Local Authorities: a) 84% (16/19 responders) Local Authorities said they will achieve the 2010 milestone to have a user-led organisation in their area that meets the DH design criteria. The authorities who said they would not were: Halton6, Liverpool, and Rochdale. b) 58% (11/19) Local Authorities said they have allocated specific funding towards meeting the 2010 target. Of those that said no (see appendix 7.3) some said funding had not been allocated yet, but it was under discussion. Others said there were general commissioning and funding programmes but none were specifically allocated for ULO’s. c) There is a mixed picture of activity amongst Local Authorities towards meeting the 2010 target. - Many are conducting baseline assessment and reviews of the current position of organisations in their authorities. - Two are in a partnership to support the development of an Advocacy Hub. - Some are nurturing and supporting existing well developed ULO’s . - One has developed a Strategic Disabled People’s Network to ensure they meet the deadline. - A few recognise they have a job to do but have not moved forward yet. 4.2. The current picture: User Led Organisations (ULOs): a) Knowledge and engagement: ? 66% (18/27) of respondents are aware of the ULO Action Learning Sites. ? 48% (13/27) of organisations are aware of Disability LIB and the capacity building support available. 10/27 were not, the remainder said they didn’t know, which suggests they were not aware of the support. * 66% (18/27) have been contacted by their Local Authority in relation to ULO work – 9 had not. * 74% (20/27) of organisations that responded are in contact with / involved with local LINk. * 37% (10/27) are involved in the Expert by Experience programme. There are no significant differences in pattern to these answers between the sub-regions. The GMR and Cheshire ULOs report being marginally more aware than other regions about the Expert by Experience programme. b) ULO Design Criteria: The majority of organisations responded positively that they meet a significant portion of the 21 criteria. However, key trends were: (i) Involving constituents – being accountable to constituents and ensuring constituents have a full and active role in decision making (which covered a number of criteria) – this received a number of negative responses or organisations said they were working towards this approach. (ii) Although 70% (19) of respondents said their organisation covers all disabled people, carers and other people who use support either directly or via links with other organisations – there was a spread of organisations who said that they didn’t understand this criteria or didn’t know, more so than other questions, which suggests a lack of clarity on this criteria. (iii) Just over half (59%) have a minimum of 75% of voting members of their management board drawn from the organisation’s constituency. (iv) Financial sustainability – 33% (9) of the organisations feel they have achieved financial sustainability independent of central government funding, although a further 25% say that they are working towards it. (v) 55 % (15) work with commissioners to improve commissioning and procurement, although 33% say they are working towards it. (vi) There was a mixed picture of paid employees who reflect the organisations constituents. ? In GMR and Cheshire 57% (8) of respondents did have paid employees that reflected their constituents, an additional three organisations say that they are working towards this. ? Across the other two regions all except one organisation reported that they had a workforce that reflected their constituents. (vii) Peer Support: * In Merseyside half (5) of the organisations said they were peer support based, with a further one organisation working towards this. * In the other regions all organisations except one reported that they did operate from a peer support basis; one organisation didn’t understand the question. This probably means they are not peer-support based. (viii) Carers: * 6 of the 10 organisations in Merseyside recognised carers have their own needs, with a further 2 working towards this approach – recognition was higher in other regions. 4.3 Developmental and Support Priorities: Local Authorities: The support needs of Local Authorities can be summarised as follows: a) The majority of Local Authorities want to share best practice/ study successful ULOs and discuss the role of CIL’s. b) Local Authorities want to be supported to promote the value of ULOs, particularly in developing commissioning and transforming social care. c) One Local Authority said they require flexibility on the definition of a ULO and the geographical boundary. 4.4. Development and support priorities: ULOs: It should be noted that all organisations, except one, who participated in this study were interested in developing as a ULO. The developmental priorities of those ULOs who responded to the questionnaire and who attended the regional meetings were as follows: a) Financial sustainability: Organisations are clear that if they are to achieve sustainability, longer term funding which supports core staff is essential. Issues raised include: i) Disabled people and their organisations need to be involved in the development of both commissioning and procurement to ensure the role of ULOs and their support needs are reflected. ii) Conversely organisations also need training and support to understand procurement and commissioning. iii) Organisations need support to develop skills in completing tenders and applications for funding. iv) A recognition of full cost recovery is needed by Local Authorities and other funding bodies. v) There need to be assurances that large non-ULOs will not be given contracts that could otherwise go to ULOs. b) Organisational Development Support to ULOs i) Design criteria 12, requires organisations to have 75% of disabled people on the Board. There was considerable comment made in the study of the balance of skills and abilities of the Board / Management Committee versus the 75% requirement. ii) Many organisations want support to galvanise and strengthen their management structure and the engagement of Board / management committee members but there is concern that this criteria will drive a “tick box mentality” and not ensure that the control lies with disabled people. iii) In addition to managerial development, service development was highlighted as a key issue. Organisations require support to develop their knowledge base in line with the rapidly developing national agenda so that services can reflect these - personalisation was highlighted a number of times. Other specific service areas included; iv) developing the number, involvement and opportunities for volunteers, v) brokerage, vi) developing a fit for purpose building in partnership with Local Authority vii) developing as a social enterprise viii) developing accessible meeting structures. c) Networking / Developing Partnerships Sharing knowledge to support organisational development was a key developmental theme identified by developing ULOs. Specific ideas for support included: i) Forming alliances locally and regionally. ii) “Buddy systems” between developing and more established organisations. iii) Sharing best practice and learning with other ULO’s regionally and nationally. iv) True partnerships with organisations and local authority, health trusts etc. d) Engagement with, and accountability to, constituents A number of organisations struggle with the need to ensure that their ULO is shaped and driven by the demand of the organisation’s constituency. For some even the definition of constituency is not clear cut and some organisations need support in defining this. i) Involving constituents at all levels of an organisation can be complex and organisations clearly require support. ii) An issue to many organisations was ensuring they involved and could respond to multi-diversity issues. iii) Many organisations specifically identified the need to increase the number of competent active members. iv) There was a noticeable lack of responding organisations who defined themselves as ULO’s and who’s activity focussed on BME people, older people or deaf people. v) The involvement of carers (Design Criteria 8) was a specific issue discussed at length in the regional meetings and highlighted in the questionnaires regarding design criterion 8. Most organisations talk about working in partnership with carers, or involving them when appropriate – but there is a real tension about their inclusion on Boards / Management Committees, or their being involved in decision making. 4.5 Preston DISC findings: Preston DISC conducted a survey as part of the information gathering for the Disability LIB development work. Questionnaires were sent out in Preston, Blackpool, Wyre & Fylde, Lancashire and Cumbria. Of the 280 questionnaires distributed across the region 134 were returned. The focus of the questionnaire was different to this study but there were relevant questions concerning the capacity building needs of disabled people’s organisations in the region. This question found similar groupings of responses: ? Funding ? Organisational developmental needs including; developing management committees and internal policy development ? Increasing and developing membership. 4.6 Step By Step Findings: The findings of the Step by Step events held in Manchester, Warrington, Lancashire and Cumbria very much reflect the broad areas already identified. However, in addition, the events specifically focussed on identifying the role ULO’s could play in commissioning as: ? To better understand the gaps in provision/to evaluate provision, ? To know what works, ? To innovate/ develop good practice/ influence real change ? To provide disability equality training to influence policy. 5. Recommendations: a) Regional Steering Group: Co-ordinated by the North West JIP, a regional steering group will be established to oversee the implementation of the recommendations of this report and support the NW to achieve the ULO commitment. Membership will include representatives of Local Authorities, user led organisations, Centres for Independent Living, LINks, Department of Health and other agencies and organisations. b) Financial sustainability: i) The NW “Commissioners Network Forum” should liaise with ULOs to identify and share good practice in developing the ULO market, including full cost recovery, minimum three year funding, and a “think local first” commitment. (4.4.a (i)) The cost to ULOs, of engaging with the diversity of constituents - in terms of financial resources and time -must be reflected in NW commissioning and procurement. practices( 4.4.d(ii)). ii) North West Development Agency and VSNW to lead a NW Strategy which will support and develop the skills and capacity of ULOs to apply for funding and tender for contracts. (4.4.a (ii) & (iii) iii)The NW JIP to organise an event which will explore with Local Authorities, ULOs and CILs good practice commissioning of ULO activities, which would result in a report/ good practice guide and lead to (b iv below) iv) To consider how to best use and promote the ADASS Concordat7 based on the Small Business Service Model8 for LAs to commission from SMEs . The concordat would ensure that supporting and developing ULOs / CILs is promoted and explicitly embedded in NW Commissioning Models We are being asked to set up and run small businesses without support and ongoing input / funding – it’s disgraceful. c) Awareness and support for Commissioners:NW JIP to develop two regional Action Learning sites for Commissioners. Two local authorities will be supported as demonstration sites, and the learning shared across the region. Whilst this was not a direct need identified by the ULOs, nevertheless it was clear from responses that there is a great developmental need for ensuring that commissioners are at the leading edge of this work, and feel empowered to support the growth and effectiveness of ULOs. The sustainability of ULOs, both financially and operationally, depends on the knowledge and practices of commissioners, therefore see also items at (5.b) above. The Equality and Human Rights Commission’s report on Care and Support – From Safety Net to Springboard9 – to influence commissioning practice in terms of Human Rights, beginning in the 2010/11 commissioning year. Local authorities are struggling with control: who is going to make the professional decisions (can’t let disabled people do it) d) Support to ULOs to develop a knowledge base on national policies and challenges: i) The North West JIP to liaise with the North West Development Agency and VSNW develop a programme of Leadership Training that is appropriate for ULOs, and that draws on the strengths of existing programmes and pilots, such as those by RADAR and the DRC.10 (4.4.b(i & ii) and (5.d(iii)) ii) North West JIP to lead a discussion with Disability LIB, NW BASIS and Voluntary Sector NW to identify resources to develop a volunteers training and management programme that is appropriate for ULOs. (4.4.b(iv)) iii) An ‘organisational advocacy’ service be developed, at sub-regional level, to offer guidance and signposting for business development support for ULOs. Currently and traditionally advocacy is thought of in relation to individuals, and this is recognised as valuable. However, organisations often need advice and support, signposting and mentoring, but training or consultancy don't quite fill the gap: organisational advocacy can provide this kind of support, with a negotiated level of support offered to targeted sections of the organisation over a specific period. (4.4.b(v, vi, vii, & viii)) We need people on the Board who are skilled and experienced, not just because they’re disabled. e) Networking and partnerships: i) Sub-regional meetings, on a six monthly basis, to share learning from the national ALS sites (4.4.d) ii) Pilot a “NW ULO Buddy” scheme/ action learning sites, with one ULO in each sub region mentoring and supporting another organisation in relation to the gaps identified during the mapping. Consider aligning this to the North West Disability Information Partnership - BASIS11 project. (4.4.d) A Centre for Independent Living (is) an umbrella which shelters and pulls together the different local user led organisations f) Engagement with, and accountability to, constituents: i) A facilitated programme of ULOs learning from each other, at a regional level, on what each “constituent group, or community of interest”, needs an organisation to have in place in order for them to participate equally. For example, a local Deaf Centre could deliver a session, leading to written guidance, on making organisations accessible to deaf people. (4.d(i & ii)) ii) A model policy and process on diversity and involvement be developed and tested in the sub regions. Consider aligning with NWDIP BASIS. (4.4.d (i & ii)). iii) Conduct a re-mapping of organisations of BME disabled people, older people and deaf people who were notable by their absence as a) respondents and b) attending regional meetings in this study. Involve/ commission key regional organisations such as; Manchester Older People’s Network. iv) Dependant on the results of the mapping (f iii), develop appropriate regional development work with organisations of BME disabled people, older peoples organisations and deaf people’s organisations. Consider aligning with NWDIP BASIS. (4.4.d (i & ii)). v) Develop a protocol on carer involvement in ULOs by working with carers and disabled people to identify the dynamics and tensions of this sensitive matter. It’s really difficult, I think, to strike that balance where people are supported and everyone’s perspectives are heard but the recognition of the power and balance for disabled people is there. g) Communications: i) A NW ULO Update quarterly publication be developed, highlighting trends and developments which are relevant / significant to ULOs, including the interface with relevant regional programmes and agency activity. (4.4.b(iii & v)) ii) Consider specific IT support to generate blogs, websites, facebook and twitter sites (not an exhaustive list!) to share experiences and learning.h) Other: some matters arose during the mapping which were significant and are worthy of mention :- i) Some respondents felt there was a need for clarity regarding User Led Organisations, CILs, and Disabled People’s Organisations. (section 1.4.) The DH could usefully make the distinction. ii) Many did not understand all the ULO criteria, or did not think them all relevant, with one LA deciding not to use them. The ULO criteria could be reviewed as part of the recommended programme of organisational advocacy, or through the recommended sub-regional meetings. (4.3.c) It’s so prescriptive, isn’t it? 6. Conclusion: This mapping exercise of local authorities and ULOs in the North West received 19 LA responses and 27 from ULOs. The views and information gathered paint a picture of various levels of activity, understanding and intention. The work is carried out in an environment where there are many similar activities which should be related and ‘joined up’, but unfortunately tend not to be. Our recommendations are based on the findings of the mapping and cover the following: a) Financial sustainability, b) Support to ULOs to develop a knowledge base, c) Networking and partnerships, including peer support, d) Engagement with, and accountability to, constituents, e) Education and support to Commissioners. The responses and comments from ULOs show a rich understanding of the issues that are crucial to their own growth and sustainability, and a huge willingness to engage with this agenda, despite a little cynicism. The local authorities are almost all engaged with the ULO activities and, perhaps understandably, more concerned with process and funding issues. For both ULOs and LAs, some are further along the path than others, and some can see their way more clearly than others. The recommendations in this report are designed to facilitate their journeys, based on what they have told us. 7. Appendices: 7.1 Blank ULO Survey User Led Organisation (ULO) Survey Name of Organisation: Address: Telephone: Text phone (Minicom): Date form completed: Completed by: E-mail address: Please return this form to Gary Timperley. By E-mail: g.timperley@breakthrough-uk.co.uk By post: Breakthrough UK, BEVC, Aked Close, Ardwick, Manchester, M12 4AN. By fax: 0161 274 4053 Introduction In 2005 the Prime Minister’s Strategy Unit produced the ‘Improving the Life Chances of Disabled People’ report. The report recommends that: “By 2010, each locality (defined as that area covered by a council with social services responsibilities) should have a user-led organisation modelled on existing Centres for Independent Living (CIL)” The principle behind this recommendation is that disabled people should be at the heart of decision making about the services they use and that one of the ways of achieving this is to invest in user-led organisations which can participate in service planning and delivery. The Department of Health is working with disabled people’s organisations and local authorities to make progress on this recommendation. The Department of Health has co-produced with disabled people 21 ‘design criteria’ or features which they think a model user-led organisation should have. Purpose of Survey The Department of Health Joint Improvement Partnership (formerly known as Care Services Improvement Partnership) have asked Breakthrough UK to do a survey of organisations in the North West which work with disabled people. Feedback from this survey will be used to inform ideas for further development work in 2009/10. We want to find out: * Whether your organisation knows about the work going on to develop user-led organisations * How involved your organisation is with this agenda * What your organisation’s development priorities are Filling in the Survey: Section 2. The survey statements in Section 2 are based on the 21 design criteria produced by the Department of Health. For each, please mark the box which most closely fits your situation. If you have any comments or can indicate any evidence to show that your organisation meets the criteria, please add these in the final column. Section 1: Knowledge and Engagement Question Yes No Don’t Know Comments 1. Is your organisation aware of the Department of Health funded work on ULOs, e.g. Action Learning Sites? 2. Is your organisation aware of Disability Lib and the capacity building support offered through this project? 3. Has the local authority contacted your organisation in relation to ULO work? 4. Is your organisation in contact with/ involved with your local LINk? 5. Is your organisation involved with the Experts by Experience programme? Section 2: Questions based on ULO Design Criteria Does your organisation meet the design criteria set out below? ULO Design Criteria Yes No Working towards Don’t Know Don’t Understand Evidence/ Comments Do you have a way of showing you meet the criteria? e.g. Mission Statement, written documents etc. 1. Works from a social model of disability perspective. 2. Promotes independent living. 3. Promotes people’s human and other legal rights. 4. The ULO is shaped and driven by the initiative and demand of the organisation’s constituency. 5. The ULO is peer support based. 6. Covers all local disabled people, carers & other people who use support either directly or via establishing links with other local networks and organisations. 7. Is non-discriminatory and recognises and works with diversity in terms of race, religion and belief, gender, sexual orientation, disability and age. 8. Recognises that carers have their own needs and requirements as carers. 9. Engages the organisation’s constituents in decision-making processes at every level of the organisation 10. Provides support in a way which enables disabled people, carers and other people who use support to exercise choice and control. 11. Is a legally constituted organisation. 12. Has a minimum of 75 per cent of voting members on the management board drawn from the organisation’s constituency. 13. Is able to demonstrate that the organisation’s constituents are effectively supported to play a full and active role in key decision-making. 14. Has a clearly defined management structure. 15. Has robust and rigorous systems in place for running a sustainable organisation (e.g. financial management/contingency planning). 16. Is financially sustainable and independent of central government funding. 17. Has paid employees, many of whom reflect the organisations constituents. 18. Identifies the diverse needs of the local population and contributes to meeting those needs. 19. Is accountability to organisation’s constituents and representation of their views at a local level. 20. Can demonstrate the participation of its constituents in designing, delivering and monitoring the organisations services. 21. Works with commissioners to improve commissioning and procurement. Section 3: Development Priorities and Support 1. Is your organisation interested in developing as a ULO, by working towards and meeting the criteria in Section 2? Yes No Reasons/ Comments 2. From the criteria in Section 2, what are your organisation’s top 3 priority areas for development? Priority 1 Priority 2 Priority 3 3. Does your organisation have any additional developmental priorities not covered in Section 2? Yes No If Yes, please give details 4. Are you getting any support at the moment to meet your development priorities? Yes No if Yes, please give details 5. What kind of support would be most useful to meet your development priorities? 7.2 List of ULO’s who returned ULO Survey 1. Body Positive NW 2. Bolton Active Disability Group for Everyone (BADGE) 3. Bradbury Fields 4. Breakthrough UK 5. Cheshire Centre for Independent Living 6. DaDa – Disability and Deaf Arts 7. Disability Advice & Information St Helens 8. Disability Association Carlisle & Eden 9. Greater Manchester Coalition of Disabled People 10.Halton Carers Centre Limited 11. Halton Speak Out 12. Joint Forum 13. Lancashire Centre for Independent Living 14. Manchester People First 15. Merseyside Coalition of Inclusive Living (MCIL) 16. Preston Disc (Disability Information Services Centre) Ltd 17. Rochdale Disabled Employers Group 18. Salford Disability Forum 19. Sefton Consultation Group for the Visually Impaired 20. Sefton Link Support 21. Step by Step Living Network 22. Tameside Blind Association 23. The Princess Royal Trust (The Warrington Carers Centre) 24. Warrington Disability Partnership 25. Wigan and Leigh Disability Partnership 26. Wigan and Leigh PASS (Personal Assistant Support Services) 7.3 List of ULO’s who attended Regional Meetings Manchester & Greater Manchester Breakthrough UK Body Positive NW Bolton Active Disability Group for Everyone (BADGE) Cheshire Centre for Independent Living Disabled People 4 Learning, Rochdale Manchester People First Moving On, Rochdale (Linked to Disabled People 4 Learning) Oldham Open Users Forum Merseyside Merseyside Coalition for Inclusive Living (MCIL) Merseyside Disability Federation (MDF) Step by Step Living Network Lancashire & Cumbria Blackpool Local Government Cumbria Local Government Disability Association Carlisle and Eden Lancashire Centre for Independent Living Preston Disc (Disability Information Services Centre) Salford Disability Forum SUGGEST (Salford Users Group Giving Enabling Strengthening Testing) * (Salford Disability Forum & SUGGEST attended the Lancashire & Cumbria event rather than the Manchester and Greater Manchester event) 7.4 Analysis of ULO Questionnaires QUESTIONNAIRE ANALYSIS ANALYSIS ISSUE – there were only three respondents from the Lancashire & Cumbria region. Preston Disc and an organisation Preston Disc are supporting via Disability LiB are two of the three organisations. Therefore we would expect them to be more knowledgeable, developed and supported. Section One - Knowledge and Engagement (Inc L&C at this stage) * 18/27 (66%) of respondents are aware of the DOH ULO action learning sites * 13/27, only (48%) of organisations are aware of Disability LiB and the capacity building support. (10/27 were not) * 18/27 (66%) have been contacted by their LA in relation to ULO work – 10 had not. * 20/27 (74%) of organisations that responded are in contact with/ involved with local LINk. * 10/27, only (37%) are involved in the Expert by Expert programme. There are no significant differences in pattern to these answers between the regions. (Only possible story is the GMR and Cheshire organisations seem a little bit more aware than other regions about the Expert by Expert programme.) Section Two - ULO Design Criteria A majority of organisations respond positively that they meet a significant portion of the 21 criteria. However key trends were: 2.1 Involving constituents – being accountable to constituents and ensuring constituents have a full and active role in decision making (which covered a number of criteria) – received a number of negative responses or organisations said they were working towards this approach. 2.2 Although 70% (17) of respondents said their organisation covers all disabled people, carers and other people who use support either directly or via links with other organisations – there was a spread of organisations who said they didn’t understand this criteria or didn’t know, more so than other questions, which suggests lack of clarity on this criteria. 2.3 Only just over half [59% (inc L&C) 54% (without L&C)] have a minimum of 75% of voting members of management board drawn from the organisations constituency. 2.4 Financial sustainability – only 33% (9) (inc L&C) 25% (6) (without L&C) of the organisations have achieved financial sustainability independent of central government funding. Although a further 25% (without L&C) are working towards it. 2.5 Only 54 % (12) of respondents (Not inc L&C) work with commissioners to improve commissioning and procurement, although 33% say they are working towards it. Regional Analysis: 2.6 There was a mixed picture of paid employees who reflect the organisations constituents. In GMR and Cheshire only 57% (8) of respondents did have paid employees that reflected their constituents, an additional three organisations are working towards this. Across the other two regions all except one organisation had a reflective workforce. 2.7 In Merseyside only half (5) of the organisations said they were peer support based with only a further one organisation working towards this. In the other regions all organisations except one did operate from a peer support basis and one organisation didn’t understand the question. 6 of the 10 organisations in Merseyside recognised carers have their own needs with a further 2 working towards this approach – recognition was higher in other regions. Section Three – Development Priorities and Support 3.1 All organisations except one in GMR and Cheshire are interested in developing as a ULO. 3.2 Priorities for development. Priorities for development identified by respondents have been analysed and clustered into groups: Organisational Leadership & development Merseyside: Galvanising organisation leadership to develop clear improvement plan/ Board Structure and development (15 in part) To embed constitutional, policy and practice amendments Develop more proactive Board members Deliver personnel strategy Greater Manchester & Cheshire : Strengthening management structure Create a more robust user-led management board Ensuring 75% disabled people on Boards/ management committee Funding/ financial stability: Merseyside: Funding in order to achieve sustainability Greater Manchester & Cheshire: Create an office and have paid staff Generate income to develop services x2 Funding to involve more disabled people in decision making Long term funding & sustainability (16) Multi-Diversity Issues Merseyside: Respond to diversity issues within disabled people – particularly those groups seldom heard (18) Social Model knowledge/ development: Merseyside Develop social approach/ work from social model of disability (1) Raise awareness of social model of mental health Engaging & accountability to constituents Merseyside Ensuring that the ULO is shaped and driven by the demand of the organisations constituency (4) Encourage more members to be involved Lancashire & Cumbria Greater involvement and accountability to constituents Greater Manchester & Cheshire Involving constituents at ALL levels Engage with service users/ staff and vols Developing peer support To improve user feedback to steer future development. Increase membership of quality and active members (6) Involving carers: Merseyside That the org covers all local disabled people and carers and other people who use support either directly or indirectly. Greater Manchester & Lancashire Meet the needs of carers to make a difference to their lives Promote training for carers Service Development: Greater Manchester & Lancashire Develop services in line with personalisation agenda Provide support in a way which enables dp and their carers and other people who use support to exercise choice and control (10) To ensure service development reflects user feedback Merseyside Promote Independent Living Develop and extend services to include carers and parents of disabled children Develop peer support To work with commissioners: Greater Manchester & Cheshire Need support to work with commissioners - skills / tools 3.3 17/ 27 (63%) of the organisations who responded said they had additional developmental priorities not covered by the 21 ULO criteria. There were none in Lancashire and Cumbria. In Merseyside these were: Brokerage User led personalisation Developing our relationship with the local authority in order to deal with issues for members of the organisation Working with commissioners to improve develop services (different?). Sharing learning and supporting wider capacity building within the community. Strengthening our own organisation in order to meet needs (different?) Increasing staff and Board skills In Greater Manchester & Lancashire these were: To develop service level agreements To work with the local authority to develop a building that will be fit for purpose. To improve networking To develop closer partnership arrangements with other local organisations x2 Develop partnerships with public private and voluntary sector To maintain the high percentage of constituents who facilitate our services Developing a robust volunteering arm to the organisation Training volunteers and staff Develop and improve staff – training and safeguarding practices Developing more accessible meeting structures To achieve high standards of internal quality control to report to Board, funders and members Developing our understanding and demonstrating that we meet the needs of a diverse community To ensure we increase awareness of our services to wider cross section of constituents Funding to develop a disability resource archive To be more proactive in campaigning for local disabled people To develop as a social enterprise To develop a CIL To support disabled people to have a higher profile in the community There were a few continuing comments about sustainable funding – and included reference to some specific projects eg: Young Carers 3.4 20/27 (74%) of the organisations who responded said they were already getting some support to meet their developmental priorities. Comments included:- Lancashire & Cumbria: Disability Lib and Futurebuilders in L&C Funding from the LA to establish a CIL in Cumbria. Greater Manchester & Cheshire: A little support from LA but it can cause a conflict of interest Secondment from the LA (MCC) Development worker from Social Services Some involvement in developing the commissioning process Waiting to work with LA towards single contracts and joint commissioning. In contact with officers in LA’s/ PCTs but not getting funding at the moment Transforming Social Care funding Some from a local organisation BT UK and Manchester LA for carers Not enough financial support CVS support – free training Merseyside: Secretarial and support systems Accessible meeting rooms LA officers come to meeting and answer questions Half of the Merseyside groups identify support from their LA’s DH funding till 2010 Support through quality development systems – IiP and PQASSO Partnership with a local Uni – to provide training for users. 3.5 What support would be most useful to meet your development priorities? Merseyside: Enhanced network and learning opportunities Government support – ensure user leadership within other national strategies. Representation of disabled peoples orgs/ disabled people at policy level in statutory organisations Core funding controlled by ULO’s National / local government core funding Financial support from LA’s More sustainable streams of income 3 year not one year funding More staff & volunteers Greater Manchester & Cheshire: Understanding of full cost recovery by funders - provision of core funding Help with funding bids/ info and access to funds Resources to sustain the development of the voice of disabled people Funding for staff and premises Funding for a development worker Ensure statutory sector funding and tendering/commissioning processes reflect the role and development of ULOs Ensure large national non ULO orgs are not given the contracts Practical support from commissioners Buddy systems between developing and more established organisations Sharing best practice and learning with other ULO’s regionally and nationally To work in parallel with other ULOs locally and regionally True partnerships with organisations and local authority, health trusts etc Recognition/ accreditation by Government of all 21 criteria met. Lancashire & Cumbria: Financial 7.5 Analysis from the three Regional Meetings- March 2009 Key Themes 1. Sustainable funding (Design criterion 16): - short term funding undermines stability and ability to plan. All funding should be for a minimum of three years. - some LAs are getting services ‘on the cheap’ or for nothing. - Full cost recovery is essential. Some organisations are receiving no funding from either central or local government but are asked to give input whenever it suits (e.g. duty to involve under the Disability Equality Duty.) - “We are being asked to set up and run small businesses without support and ongoing input/ funding.” - “Funding goes to big organisations with glossy marketing – who still do FOR disabled people/ users and claim to speak for them.” 2. Issues around Tendering and Commissioning - Disabled people and their organisations need to be involved in procurement and commissioning. “A lot of ULO’s are going to find it really difficult when they’ve got to go to tender” (Lancs/ Cumbria participant) “I think they do prefer to look for larger organisations because it’s easier to handle the responsibility there” (Merseyside participant) “The smaller organisations don’t want to make those changes which in fact sometimes might be the only way forward” (Merseyside participant) - Lack of appreciation of the true cost and additional benefits of inclusive practice among LAs: “Cheapest isn’t the best” (Merseyside participant) - Streamlined avenues to funding: “We need to be able to get to that money in an easy way” 3. Design criterion 12 -It is important that disabled people are in the majority on the boards of user-led organisations, but an organisation can be a ULO without having 75% disabled people on the board. “We need people who are on the board because they have the skills and experience, not just because they are disabled.” (GM/ Cheshire meeting participant) “It is all about who has control and power within the organisation” (Lancs/Cumbria participant) “It’s difficult to have an arbitrary number isn’t it?” (Merseyside participant) “You’ve got to demonstrate that you are working with disabled people in a position of power and authority within an organisation” (Merseyside participant) Associated discussion around differences between: Centres for Independent Living (CILs) , ULOs and Disabled People’s Organisaitons (DPOs) 4. Involvement of disabled people and their organisations with the public sector – The involvement of disabled people and their organisations - is beginning to have a positive impact. People are questioning and challenging more. However, some LAs still doing token consultation rather than partnership with disabled people. 5. Design Criterion 8 -Involvement of carers in ULOs. Debate about the term ‘carer’ as opposed to ‘support worker’ and ‘personal assistant.’ Debate as to whether carers should be in ULOs. “There is a big debate about that and the pioneers of the CIL’s felt very strongly that their definition of user-led did not include carers, but the reality they were facing, the issue that was brought to the table was that they could not find enough members to actually manage and run the CIL” “I think there’s some argument to say that if you believe in the wider social model that disability isn’t intrinsic in the individual, that it’s imposed, then it’s also imposed on the family and friends” Greater Manchester and Cheshire * Competition among disabled people’s organisations for funding prevents them working together and sharing best practice * Local Authorities are struggling with control: who is going to make the professional decisions (can’t let disabled people do it.) There needs to be a big change in culture and thinking in Local Authorities. Lancashire and Cumbria * Issues with the setting up of and development of user-led organisations: “You can’t make people set up a user-led organisation, you can’t create a grass-root”. * CIL seen as what ULOs should aspire to become. “It seems to me that CIL’s that have evolved from a Direct Payments background are much more likely to tick those boxes” (i.e. meet the 21 design criteria) We need in the long term, places to be provided that a community could regard as their CIL” * Resistance to change (LA) and lack of knowledge and political awarenes among disabled people (Cumbria) Merseyside * Reluctance to deal with some organisations by Local Authorities * Lack of knowledge sharing among organisations: “Because everyone is competing for the same thing, they’re less likely to work with everyone else”. * Reluctance of LAs to give up control: “Partly it’s about risk management, you know, who’s responsible and who’s held accountable when it hits the fan” “On an individual level, it’s about: we want to give you as an individual all this money, but we’re still responsible for you”. 1 http://www.cabinetoffice.gov.uk/strategy/work_areas/disability.aspx 2 http://www.leeds.ac.uk/disability-studies/archiveuk/UPIAS/UPIAS.pdf 3 http://www.breakthrough-uk.com/socialmodel.shtml 4 http://www.disability-archive.leeds.ac.uk/authors_list.asp?AuthorID=8&author_name=Barnes%2C+Colin 5 “Improving the Life Chances of Disabled People” PMSU 2005 - page 84 6 Halton said they were not using the ULO criteria – rather, they will use the Advocacy Hub. 7 http://www.ncil.org.uk/uploads/pdf/4955471_NCIL%20protocol%20(2).pdf 8 http://www.supply2.gov.uk/pdfs/concordat.pdf 9 http://www.equalityhumanrights.com/en/publicationsandresources/Pages/Fromsafetynettospringboard.aspx 10 http://83.137.212.42/sitearchive/drc/About_Us/leadership_strategy.html http://www.radar.org.uk/radarwebsite/tabid/217/default.aspx 11 Funded by the Big Lottery Fund; lead organisation is Merseyside Disability Federation. Breakthrough UK is a partner. http://www.merseydisability.org.uk/ North West ULO Regional Development 2009