User Led Organisations (ULOs)

1. User Led Organisations (ULOs)

2. What are User-Led Organisations (ULO’s)? DOH definition • an organisation where the people the organisation represents, or provides a service to, have a majority Management Committee or Board and where there is clear accountability to members and/or service users • at least 75 percent of the voting members on the Management Committee or Board must be drawn from people the organisation represents, supports or is set up to work with

3. Why ULOs? • Improving Life Chances Improving the Life Chances of Disabled People (2005). A key recommendation - by 2010, each locality covered by a Council with social services responsibilities should have a User-led Organisation modelled on existing CILs (Centres for Independent Living)”. • Putting People First Objective ‘Support for at least one local user led organisation and mainstream mechanisms to develop networks which ensure people using services and their families have a collective voice and can influence policy • Local Authority Circular 2008 ‘Where ULOs do not exist, a strategy to foster, stimulate and develop user led organisations locally.’

4. But most importantly disabled people, their families and carers say they want and need them! Important questions • How far can user-led organisations be involved in development of a ULO modelled on a Centre for Independent Living (CIL)? • How ready are we to “grow” a ULO ? • How ready and able are local user-led organisations to develop into “ULOs modelled on existing CILs? • What do people want and need in Lincolnshire?

5. ULO Design criteria - values • Based on the social model of disability • Promotes independent living • Promotes people’s human and other legal rights • Shaped by people who use services • Is ‘peer support’ based • Covers all local disabled people, carers and other people who use support either directly or via links with other organisations • Is non discriminatory and recognises and works with diversity • Recognises that carers have their own needs/requirements • Engages the organisation’s constituents in decision-making processes at every level of their organisation

6. ULO Design criteria - characteristics • Provides support to enable people to exercise choice and control • Is a legally constituted organisation • Has a minimum of 75 per cent of the voting members on the management board drawn from people who use services • Able to demonstrate that people are supported to play a full and active role in decisions • Has a clear management structure • Is financially sustainable • Has paid employees, many of whom are users of the services • Accountable to users of services and represents their views • Supports the participation of people in designing, delivering and monitoring its services • Works with commissioners to improve commissioning and procurement

7. Information advice and guidance; • Advocacy and peer support; • Assistance with self-assessment; • Support in using individual budgets to meet needs; • Support to recruit and employ personal assistants; • Community transport network • Disability equality training; and • Consumer audits of local services • HR and training services Types of services provided by a ULO

8. Why should public sector invest in ULOs • Key to delivering choice and control and promoting independent living • Can empower people to shape their own lives and services • To deliver real user involvement • ULOs can support Councils to deliver on key priorities and therefore improve their performance, e.g. personal budgets, carers strategy, promoting health

9. Findings from ULO Regional Project • Little evidence of investment in ULOs from social care reform grant • Uncertainty about what a ULO is • Lack of information about whether ULOs meet some or all of the 21 design criteria. • Some LAs slow off the mark to put strategic plans in place • Acknowledgement of the need for ULOs to be supported; areas identified include training, funding, social enterprise development, regional support systems, strategic and business planning and marketing. • ULOs identified a need for regional support and sharing of information but limited resources to make this happen

10. Progress in Lincolnshire • ULO’s - subject of the Co-Production development group meeting on 11th September 2009. • A draft strategy showing ‘what we will do to foster, stimulate and encourage user led organisations locally’ was agreed by the PPF Board on 9th November • Regional workshop in Newark on 20th January • New advocacy and involvement contract includes support for the development of a ULO • Research work to be commissioned • Grant funding application being made