A commissioner’s guide to developing and sustaining local user-led organisations

Further resources and references

Where can I get further advice?

For further support and advice on developing and sustaining ULOs, contact your local regional ULO or TASC lead, or your local Deputy Regional Director. Further advice and support is also available from ADASS and the National Centre for Independent Living.

Click on the headings below to find out more:

Useful websites Open

Department of Health: Use this link to explore Department of Health archived pages relating to ULOs. For the 21 design criteria go to the Department of Health’s website at www.dh.gov.uk and search under ‘policy and guidance’.

SOLNET: This is a networking website run by Shaping Our Lives for ULOs, and can help commissioners and others find out what ULOs are doing in their area.

Putting People First: Search for 'supporting user led organisations' for information related to transforming adult social care.

Disability Archive UK: This is an archive of writings on disability, particularly that of disability activists.

Disability LIB: Disability LIB’s website has lots of useful information, including an interactive map showing disabled people’s organisations. See Disability LIB’s Pilotlight scheme below for more information about the support available for Disabled Peoples’ Organisations.

Capacity builders: This website offers advice and support to civil society organisations. See ODI’s improving support scheme below for more information about the specific support available for Disabled Peoples’ Organisations.
Useful resources Open
SCIE Social Care TV
- Personalisation – making it happen: user-led organisations
East Sussex User Led Organisations Support Pack The User Led Organisation’s Support Pack is designed to help voluntary and community organisations to put service users and carers at the centre of what they do. Evidence suggests that the more an organisation is led and owned by the people that use it, the more likely it is that it will deliver services that are useful and wanted and which help people to achieve their goals in life - a principle that underpins personalisation.

Funded by the Department of Health and produced by East Sussex Disability Association and East Sussex Adult Social Care in partnership with a team of service user and carer experts, the Support Pack contains useful tips, templates and advice on how to make your organisation genuinely user led.
Developing and sustaining ULO resources

The National Centre for Independent Living have an area of their website dedicated to sharing information and learning about developing and sustaining user-led organisations. You will find lots of useful resources collated under the following headings: management and governance; models of ULOs; finance and quality; service delivery; and equality, diversity and human rights. Go to NCIL and click on ULO resources.

Youtube short videos

The Essex Coalition of Disabled People have produced three videos on developing and strengthening ULOs which you can access using the links below:
The following Department of Health videos are also available via youtube:
Example study day: commissioning for and with ULOs

As part of the Eastern Region Development Programme, Norfolk County Council commissioned the Essex Coalition of Disabled People together with the Norfolk Coalition of Disabled People to deliver a study day for local commissioners. The day’s learning focussed on discussing and sharing good practice, and learning from past barriers and solutions.

For more information on the day, download the following documents:
ULOs and Personalisation Toolkit and Resources for Commissioners

Vision Sense - a ULO in the North East of England - have produced resources to help commissioners work with ULOs. The aim was to facilitate the cultural and process changes needed to develop ULOs locally, as a catalyst for personalisation. Disabled people worked with 14 Social Care and Health Commissioners and PPF leads (through the RIEP). The resources answer the questions posed by the Commissioners and their colleagues. They provide policy and strategy resources for personalisation and prevention, as well as ULO development action plans for brokerage, self-directed support services and peer review.
- Vision Sense - Action learning for ULO market development (1MB PDF file)
- Governance Training For User-Led Organisation Trustees (250kb PDF file)
Support for new and emerging disabled peoples’ organisations Open

Disability LIB’s Pilotlight scheme Disability LIB offer free training, advice and resources to Disabled Peoples’ Organisations including business planning, consortia building, fundraising, leadership and inclusion. As part of its work Disability LIB offers access to business coaching and mentoring through Pilotlight. For more information go to pilotlight.

ODI’s Improving Support scheme The Office for Disability Issues and Disability Association Carlisle & Eden have joined forces to establish a disability ‘portal’. The portal is a dedicated page on the Improving Support website through which disability organisations (and interested others) can search for and share information and news, publicise events, use it to find out what others in their locality or region are doing, and to help build an archive of useful tools and resources available to colleagues throughout the country. Visit Improving Support.

West Berkshire’s experiences of developing a new ULO This presentation (260kb PDF) describes West Berkshire’s approach to developing a ULO. Commissioners brought together existing local activists from a range of specific disability groups. They reached a shared understanding on the need for a central network, together with agreed priorities for further action to directly benefit users of care services. Together, commissioners and service users obtained a grant from the Department of Health South East as a demonstrator site. For more information please contact Nigel Owen.
References Open

Association of Directors of Adult Social Services, Department of Health and the Local Government Association (2009) Progress measures for the delivery of transforming adult social care service, London: ADASS, DH and LGA.
Barnes, C. and Mercer, G. (2006) Independent futures: Creating user-led disability services in a disabling society, Bristol: Policy Press.

Bewley, C. and McCulloch, L. (2004) Helping ourselves: Direct payments and the development of peer support, London: Values into Action.

Department of Health (2009) Local authority circular 1: Transforming adult social care, London: Department of Health.

Department of Health (2007) User-led organisations project policy. Prepared by Social Care, Local Government and Care Partnerships Directorate, London: Department of Health

HM Government (2007) Putting people first: A shared vision and commitment to the transformation of adult social care, London: HM Government

HM Government (2009) Putting people first: Working together with user-led organisations, London: HM Government.

Maynard-Campbell, S. with Maynard, A. and Winchcombe, M. for the Department of Health (2007) Mapping the capacity and potential for user-led organisations in England, London: Department of Health.

Murray K., Tyson A. and Murray-Neill, R. (2006) Increasing the uptake of direct payments: A self-assessment and action planning guide for local councils with social services responsibilities and their partners (PDF), London: Care Services Improvement Partnership

NCIL (2005) Unpublished report on direct payments

Prime Minister's Strategy Unit (2005) Improving the life chances of disabled people (PDF), London: Cabinet Office.

Shaping Our Lives (2009) Unpublished report of a consultation on user-led organisations and the role of commissioners
Further reading Open

Begum N (2006) Doing it for themselves: participation and black and minority ethnic service users SCIE Report 14, Social Care Institute for Excellence and Race Equality Foundation.

Beresford P (2003) It's Our Lives. A Short Theory of Knowledge, Distance and Experience Citizens Press in Association with Shaping Our Lives, London.

Beresford P: Making Participation Possible: Movements of disabled people and psychiatric system survivors in Jordan and Lent (eds) Storming the Millenium: the new politics of change (1999) Lawrence and Wishart

Boyce M et al (2010) Innovatory features and challenges facing mental health user-led organisations Mental Health Review Journal 15(2) 34-42

Branfield, F. and Beresford, P. (2006) Making user involvement work: Supporting service user networking and knowledge, York: Joseph Rowntree Foundation.

Campbell P (1996) The History of the User Movement in the United Kingdom In: Heller T, editor. Mental Health Matters: A Reader. Macmillan, Basingstoke.

Morris, J. for the Department of Health (2006) Centres for Independent Living/Local user-led organisations: A discussion paper, London: Department of Health.

NCIL, ADASS and LGA (2009) Joint Protocol between National Centre for Independent Living, Association of Directors of Adult Social Services, and the Local Government Association for the provision of user-led organisations (including Centres for Independent Living) and user-led support services, London: National Centre for Independent Living.

NCIL (2008) Peer support and personalisation: A review prepared for the Department of Health, London: National Centre for Independent Living.

Social Care Institute for Excellence with the National Centre for Independent Living (2009) At a glance 15: Personalisation briefing: implications for user-led organisations (ULOs), London: SCIE.

Tilley (2004) The History of Self-Advocacy for People with Learning Difficulties: International Comparisons. Report on the conference held on 6-7 May 2004 at the Open University, Milton Keynes.

Wallcraft J, Read J and Sweeney A (2003) On Our Own Terms: users and survivors of mental health services working together for support and change. The Sainsbury Centre for Mental Health, London