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

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. 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

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