User Led Organisations (ULOs)

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 Is it just another thing for us to do, are we already doing it, could it be done better?

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.’

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?

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

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

Types of services provided by a ULO 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

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

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

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