At a glance 15: Personalisation briefing: Implications for user-led organisations (ULOs)

This briefing has been co-produced with the National Centre for Independent Living (NCIL).

Published: October 2009

Key points

  • Personalisation for user-led organisations means:
  • people who use services determining their own needs and planning their own support
  • recognising that people who use services have skills and expertise as well as support needs
  • the opportunity for user-led organisations to take their rightful place in the social care community and marketplace
  • the government has said that there should be a user-led organisation in every local authority/Northern Ireland health and social care trust with responsibility for social care, modelled on existing centres for independent living – the ‘Transformation Grant’ provides resources for this
  • the government has published advice (written with people who use services) outlining the benefits that local authorities can enjoy when they work with user-led organisations
  • recognising that user-led organisations need to reach out to all people who may need social care support – including older people and people with mental health problems
  • the chance to engage with and support more marginalised people and to promote equality and diversity issues within the local authority/Northern Ireland health and social care trust.

What is personalisation?

This At a glance briefing examines the implications of the personalisation agenda for user-led organisations. Personalisation means thinking about care and support services in an entirely different way. This means starting with the person as an individual with strengths, preferences and aspirations and putting them at the centre of the process of identifying their needs and making choices about how and when they are supported to live their lives. It requires a significant transformation of adult social care so that all systems, processes, staff and services are geared up to put people first.

The traditional service-led approach has often meant that people have not received the right help at the right time and have been unable to shape the kind of support they need. Personalisation is about giving people much more choice and control over their lives and goes well beyond simply giving personal budgets to people eligible for council funding. Personalisation means addressing the needs and aspirations of whole communities to ensure everyone has access to the right information, advice and advocacy to make good decisions about the support they need. It means ensuring that people have wider choice in how their needs are met and are able to access universal services such as transport, leisure and education, housing, health and opportunities for employment, regardless of age or disability.

What are the implications for user-led organisations?

User-led Organisations (ULOs) are organisations that are run by and controlled by people who use support services, including disabled people of any impairment, older people, and families and carers. They were set up to promote giving people more choice and control over how their support needs are met. Typically they might provide:

What has the government said about ULOs and personalisation?

One of the recommendations in the Prime Minister’s Strategy Unit report Improving the Life Chances of Disabled People published in 2005(1) was that there should be a ULO in every local authority/Northern Ireland health and social care trust area with responsibility for social care, modelled on existing centres for independent living. This commitment has become a key part of the personalisation agenda and was re-stated in the Putting People First concordat(2) in December 2007:

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, influencing policy and provision."