support schemes, peer support, benefits advice, equipment hire, housing advice and support to smaller self help groups, they often link into wider regional and national agendas. Traditionally CIL have been building centres where people are able to drop in, pick up relevant information and access a range of relevant services. Organisations that provide disability related information may be co-located in a Centre of Independent living making it easier for people to go to one place. However, more recent CIL are taking different forms that are not necessarily building based. Enfield Centre of Independent Living operates virtually, through sharing a website between user led groups in the area and running services jointly. Why is it important to develop a ULO in Lincolnshire: This view is supported by the crucial UN Human Rights Convention on the Rights of People with Disabilities which has made the commitment to achieve equality for disabled people by 2025. The government paper’ Improving the Life Chances of Disabled People’ 2005 sets out a clear recommendation based on research that has been undertaken, that all local authority areas should have at least one ULO based on a Centre of Independent Living by 2010 In support of this and in the context of transforming Adult Social Care, Ian Loynes Chief Executive of Southampton Centre of Independent Living stated at a recent ULO conference in London: “ULO’s are the only agents of social change and the only ones who can implement the personalisation agenda” The Independent Living Strategy 2008 advocates the transfer of resources from traditional assessment and care management into user led support, advocacy and brokerage services. Lincolnshire already has organisations run by disabled people, carers groups, self help groups and other user-led services, why is this different: The majority of groups and organisations in Lincolnshire that are led by the people they represent are focused around one or two service user groups or communities of interest. For example the Carers Partnership is for carers, LAPD has a majority membership of people with physical disabilities, Headway supports people
with brain injuries and their carers, the Shush Service User Self Help group predominantly supports people with mental health problems and GAIN supports people with autism in Grantham. There are a large number of organisations that represent different groups of people in Lincolnshire but no single organisation brining these together representing a united voice for independent living rights. What support a ULO offer? Each ULO must be driven locally finding out what is important to its members and work democratically developing its own practical solutions. There are many different models for ULO’s and they all differ in what they do. However, the common services provided by a ULO are: Information and Advice Advocacy and peer support Peer Champions Support in using direct payments and individual budgets Support to recruit and employ personal assistants Disability Equality Training, Access audits, implementation of the Disability Equality Duty Assistance in self assessment Campaigning for disability rights. Disability housing and design consultants Counselling services Training for employers and personal assistants What ULO’s are not: Due to the variation in ULO’s and their structure it is also useful to define what they are not: A group of interested parties running groups ‘for’ people A group of well meaning people raising money for trips and activities and non rights based activity A local group governed nationally A group where decisions are made by non disabled people It is important to state that large disabled charities have at times claimed to be ULO’s whilst describing the people they support as needing protection rather than rights. Due to the size of larger disabled national charities they have been able to secure often scare resources allowing them to further expand at the expense of locally led and run service user organisations and groups.
Income generation: Charging for access advice to businesses, local authorities, district councils Training courses Investing surplus Charging personal budget holders for services e.g payroll, Consultancy Student Social work Placements Additional important factors in effective ULO’s: In order for ULO’s to be sustainable they need to include people with a good mix of skills. Particularly in the following areas: Management Leadership Business Skills a representative Voice Networking Involvement and Inclusion It has been highlighted that ULO’s can face additional difficulties to other third sector organisations as people may have variable input due to ill health. It is a crucial element of successful ULO’s that the skills required within the organisation do not fall on a few people. What could a ULO in Lincolnshire do for smaller user-led groups and individuals: Scoping work and capacity building projects carried out across the country have proposed that a network of organisations with in a locality may be required in order to fulfil the functions of a centre of independent living for all service user groups. The benefit to this approach are: A larger voice to shout louder and influence policy Common barriers faced by different groups can bring an important issue to the forefront Support between organisations to strengthen each other Shared learning, the positive and negative Joint collaboration for delivery to win contracts, funding and support Shared resources e.g admin support, payroll, HR, funding advice Better communication, awareness and publicity Addressing the gaps and listening to the needs of local people Representation regionally and nationally Reaching a wider number of people making diversity its strength. Joint branding-greater publicity. Engage with people who not be involved in statutory services Lobbying for local support e.g free or subsidised local authority venues
We can use this feedback as a starting point for a ULO to build on. The key issues that appear in the feedback from this are: Support to Self Help/ smaller user-led groups. Potential here to link groups together through a self help cooperative/network Options for employment of carers and support workers E.g Care Cooperatives Lack of available care in areas Effective communication of information: A directory of directories!! Pooling and managing personal budgets Peer support/Expert Patient Local area representatives to address rural or area specific issues Transport Being listened too and feeling valued. Making a difference through involvement. What will a ULO do that is different to LINk, Partnership boards, forums, the new involvement contract, how will it work together? The Local Involvement Networks (LINk): Give everyone the chance to say what they think about their local care services public, private and voluntary sector – what is working well and what is not so good • Give people the chance to check how care services are planned and run • Feedback what people have said about services so that things can change for the better. The LINk does not provide any services like peer support and training but provides a voice for local people to influence all types of care in their area. LINk’s have additional powers to go into organisations to review issues identified by their members. They do not work on single cases but where there are reported to be common experiences. Partnership Boards: are generally funded by authorities and enable people to influence local authority commissioning and practice, raise awareness of issues like Hate Crime, Accessibility and provide networking between related organisations. They are generally divided into different areas of interest: Local Implementation Group- for mental health Learning Disability Partnership Board Physical and Sensory Impairment Partnership Board They do not provide services but enable dialogue between public bodies and service users. In some areas the ULO’s chair the partnership boards.
Total Voice (Speaking Up and The Healthy Hub) The new advocacy and involvement contract will support people in Lincolnshire to become involved in how their services are delivered and how their needs are met. This could include involvement in your own care plan, involvement in projects and research, being a trustee or member of a user led group. Speaking Up are a partner in the ULO bid and therefore will support any individuals and groups to be involved in the development of the ULO. This support could be around accessing appropriate training for people to be involved. What next: With support from the National Centre of Independent Living (NCIL) an event is being planned for July 2010, inviting individuals and user-led groups with an interest in disability, equality rights and working together for the future. Other ULO’s and Centre’s of Independent Living will be speaking at the event to talk about the work they do, the differences its has made to the people they represent and the challenges they have faced. Different models of ULO’s will be invited to speak to give a wider understanding of the various possibilities for Lincolnshire. Outcomes: For people to find out about the role and benefit of a ULO’s Find ways to on what already exists in Lincolnshire Raise awareness that everyone has skills and insight to offer to a ULO. Get together user-led groups and individuals with an interest in the disability rights movement, equality, independent living and the barriers that people face. Strengthen a user led movement in Lincolnshire , Explore different models for a ULO in Lincolnshire learning from the steps taken by other organisations. Create a project steering group Provide an opportunity for people to state what they would want from a ULO. to the business plan for the ULO Input to the development of services suggested by people in consultations. Opportunities to be included in the future work of the ULO. Appendix 1- Criteria for a ULO on a Centre of Independent Living Values of a ULO: