1. Ian Loynes Chief Executive, SCIL User Led Organisations : SCIL’s Journey & Learning Points 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton Centre for Independent Living

2. Building sustainable ULO’s Jan 1995: Prime Minister’s Strategy Unit ‘s “Improving the Life Chances of Disabled People”: ‘Disabled people are best placed to take the lead in identifying their own needs and in identifying the most appropriate ways of meeting such needs’ Recommendation 4.3: By 2010, each locality should have a user-led organisation modelled on existing CILs. At a minimum, these organisations should provide: information and advice; advocacy and peer support; assistance with self-assessment; support in using individual budgets to meet needs; support to recruit and employ personal assistants; disability equality training; consumer audits of local services.

3. Building sustainable ULO’s However, SCIL’s experiences show that the important aspects to creating and sustaining successful ULO’s are: WHY users should control their support organisations; and HOW to ensure these organisations are modeled on existing CIL’s (i.e. working to the Social Model of Disability, Peer-support and the principles of Independent Living) What motivates Disabled People to want to set up a ULO Common: interests, values, beliefs. Agents for social change (Campaigning!) Not Just a provider of services, just another business/charity Sustainability is as much about the empowerment of individuals as it is about resources

4. Disabled People Defined: 12 Basic Rights to Independent Living: Full ACCESS to our environment A fully accessible TRANSPORT system TECHNICAL AIDS/EQUIPMENT Accessible / adapted HOUSING PERSONAL ASSISTANCE Inclusive EDUCATION and TRAINING An adequate INCOME Equal opportunities for EMPLOYMENT Appropriate and accessible INFORMATION ADVOCACY (towards self advocacy) COUNSELLING Appropriate and accessible HEALTH CARE provision ?13: Right to social life, relationships?

5. SCIL’s Range of Enabling Services Supporting the empowerment of Disabled People through: Advice and Information on Self-Directed Support Peer Advocacy & Peer Mentoring Personal Development & Participation Promoting Disability Equality through: Training & Consultancy Consumer & Access Audits Practice & Learning Opportunities Most importantly: SCIL Campaigns for the rights of Disabled People and represents their views.

6. ULO’s Today: Finding it hard to survive – lack of Local Authority support and tendering rules Restrictions about what they are ‘allowed’ to do Whilst we argue that we should have a right to a place at the table, the reality is that there are many happy to deny that right BECAUSE IT IS ABOUT POWER

7. SCIL Challenges, Successes: Drowning in rhetoric, starving of practical support (crumbs from table!) Resources: NEVER had core funding Tendering rules grossly biased against small ULO’s: Highlight NCIL-ADASS Protocol Everything we have is down to refusal of Disabled People to give up Total Transformation (etc): Virtually none of these resources have gone to ULO’s Paradoxically, such adversity helps...

8. SCIL Challenges, Successes: Developed best Direct Payments schemes in UK Most pro-active CIL in UK Respected by Disabled People and Government By maintaining clear aims, values, quality Only Disabled People control our agenda Clear vision Pragmatic: We say what is wrong; but will work with those committed to improvements Financial accountability Strong focus on income generation Personal Development and Empowerment work is critical in feeding our sustainability: Obvious funding opportunity Have little difficulty recruiting Disabled staff Disabled People drive our constant innovation

9. Local Authorities cannot implement their Personalisation Agenda or their equality duties without effective ULO’s Keepers of Independent Living & Social Model Faith ULO’s at the forefront of every progressive social policy advance in last 25 yrs ULO’s have a critical role in enabling users to have an empowered voice – no-one else should speak for us ULO’s Must be Campaigners (not just service providers) ULO’s Must challenge policies (Local & National) which limit the inclusion of Disabled People

10. But how can ULO’s sustain themselves? Successful organisations are successful because they are different – high quality and high principles WILL show through MUST BE BASED ON CIL’S Must be more business like – what we have is valuable and unique, sell it (social enterprises) Must be enabled to provide a range of services that generate income Must work to empower Disabled People to develop their skills within ULO’s rather than expect them to just appear Thinking “Outside of the Box”….

12. Thank You! Ian Loynes Ian@SouthamptonCIL.co.uk