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User-Led Organisations User-Led Organisations What’s in it for users? What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton Centre for Independent Living
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User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

Dec 13, 2015

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Timothy Shelton
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Page 1: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

User-Led OrganisationsUser-Led Organisations – – What’s in it for users?What’s in it for users?

1984-2009: Celebrating 25 Years of Independent Living1984-2009: Celebrating 25 Years of Independent Living

Promoting equality across the South

Southampton Centre for Independent Living

Page 2: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

Building sustainable ULO’sBuilding sustainable ULO’s

However, the important aspect to creating and sustaining sucessful ULO’s are:

WHY users should control their support organisations; and

HOW to ensure these organisations are based on existing CIL’s (i.e. working to the Social Model of Disability, Peer-support and

the principles of Independent Living)

Maybe a brief history lesson will help…

Page 3: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

History of CIL MovementHistory of CIL Movement

Origins in civil rights movements of the late 1960s, the Independent Living Movement grew out of the Disability

Rights Movement, which began in the 1970’s

Independent Living is a philosophy, a way of looking at disability and society, and has developed into a worldwide

movement of Disabled People who work for self-determination, self-respect and equal opportunities

The first Centre for Independent Living was founded by Ed Roberts, in Berkeley, California in 1972. Created to offer peer

support; are run and controlled by Disabled People and work to the

Social Model of Disability

Page 4: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

History of CIL MovementHistory of CIL Movement

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

Page 5: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

SCIL’s Range of Enabling ServicesSCIL’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

SCIL Campaigns for the rights of Disabled People and represents their views.

Page 6: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

ULO’s Today:

• Finding it hard to survive – lack of Local Authority support and tendering rules

• 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.

Page 7: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

ULO’s Principles: (DoH Design Criteria)

• Run and Controlled by Disabled People or Carers

• Peer-support

• Independent Living & Social Model of Disability

• Campaign for human rights

• Provide advice and support to enable Disabled People to live independently

• ULO’s at the forefront of every important social policy advance in last 25 yrs

• But we must accept where the world has moved to; and move with it,

• Find new ways to be relevant

Page 8: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

Local Authorities cannot implement their Personalisation Agenda or their equality duties without effective ULO’s?

•Keepers of Independent Living & Social Model Faith

•ULO’s have a critical role in enabling users to have an empowered voice – noone else should speak FOR Disabled People

•ULO’s Must be Campaigners (not just service providers)

•ULO’s Must challenge policies (Local & National) which limit the inclusion of Disabled People

Page 9: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

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 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

• Become “Critical Friends” to Local Authorities

• Thinking “Outside of the Box”….

Page 10: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.
Page 11: User-Led Organisations – What’s in it for users? 1984-2009: Celebrating 25 Years of Independent Living Promoting equality across the South Southampton.

Thank You!Thank You!