User Involvement Protocol
What is user involvement? According to Small (2000), the transition of an individual from passive recipient of services to active subject engaging with services is at the centre of user empowerment.
The development of service user involvement in the voluntary and statutory sectors has largely stemmed from user movements advocating for rights of their members like the disability movement (Beresford 2005; see Rummery & Glendinning 2000; and Ellis 2005 for examples).
The aim is to develop a model where the consciousness of users and the wider community is raised and as a result the people involved are empowered to make decisions not only about the services they receive, but also in their lives as a whole. There is a hope that this in turn will be effective in bringing about change in policy and practice through allowing the voices of those receiving the services to be heard. (Campbell & Oliver 1996). Barnes & Walker (1996) identified eight principles of empowerment through service user involvement:
- Should enable personal development as well as increasing influence over services
- Should increase people's abilities to take control of their lives as a whole not just increase influence over services
- The empowerment of one person should not result in the exploitation of others, either family members or paid carers
- Should not be viewed as a zero sum: a partnership model should provide benefits for both partners
- Must be reinforced at all levels within service systems
- Empowerment of those who use services does not remove responsibility from those who provide them
- Not an alternative to adequate resources for services
- Should be a collective as well as an individual process, without this people will become increasingly assertive in competing with each other.
What is WAND's approach to user involvement?
WAND believes it is important that disabled people have the following in order to be able to effectively participate:
- disabled consumers must have the capacity actually to exercise power (e.g., we must be able to make choices and understand the consequences of each)
- disabled consumers must occupy roles in which power can be exercised; we must have authority. (e.g., we must have control of the decision-making process)
- disabled consumers' role must be situated within links and networks such that the exercise of power is effective; that it achieves its purpose. (e.g., we must have the resources and personnel to carry out the decisions)
In order to achieve the above WAND will provide ongoing support and training to disabled people wishing to participate. It is important that all of the people involved have an understanding of disability and that they are adequately supported to understand the structures of the organisations that they are trying to influence.
What are the different levels of involvement?
- Full control - Service users control decision making.
- Sharing power - Shared decisions & responsibility. Service users can have influence and determine outcomes.
- Participation - Encouraging people to take part in shaping the service. Service users can make suggestions and influence outcomes.
- Consultation - Asking people what they think of the service. Service users have limited influence.
- Information - Telling people about the service. Service users have no influence.
- No control - Service users as passive consumers
Principles of service user involvement
All service users have the right to:
- Be involved at a level that they feel is appropriate to them and their circumstances at the time; and conversely, change their mind and choose not to be involved if things change for them.
- The appropriate support to become involved and sustain, develop or withdraw their participation, as they choose.
- Be supported in accessing clear, jargon-free information in a variety of formats.
- Receive formal and informal feedback on the outcomes generated by their involvement.
- Expect respect for their contribution.
In addition:
- All service users should have an equal access to all methods of participation and they should not be discriminated against on any grounds.
- Constructive criticism should be encouraged and differences of opinion should be respected and resolved in a non-confrontational manner.
- Service users should be reimbursed for costs incurred during their involvement.
