The participation of adult service users, including older people, in developing social care
Structure - Dealing with barriers to participation
Service users can be supported in overcoming some of the barriers to individual participation in three main ways. These are through:
- policies aimed at minimising the costs to service users; and
- systems that are flexible enough to take account of the way in which a person’s circumstances or disability might influence his or her ability to participate.
Supporting service users through training is an example of capacity building whereby, as service users become more confident, their capacity for activity is increased. This has been a key feature in the development of user-controlled organizations (Postle & Beresford, 2007). However, investment in capacity building has remained low or poorly co-ordinated and this has been identified as a major reason why communities and service users remain excluded from systems for decision-making (Duncan & Thomas, 2000).
The practice survey identified the three following types of training for service users.
1. Campaigning and lobbying skills
Campaigning skills, and being able to put one’s views across effectively, are very important for service users, especially if they are taking part in formal settings, such as being a representative on a local authority strategy group. Although many service users are experienced campaigners, others are not. Training in campaigning and lobbying skills helps those without experience in this area.
See Practice Example for Alzheimer’s Society.
2. Assertiveness training
Assertiveness training can be used to help service users become more confident at expressing their views.
3. Workplace skills
Training can be used to support service users who would like to become paid workers or volunteers. This includes training in counselling and presentation skills, project management and staff recruitment.
See Practice Examples for Bradford Metropolitan District Council.
Offering training is especially important where service users are involved in specialist roles, such as teaching on social work education programmes (Duffy, 2006) or working as co-researchers (Miller et al., 2006; Smith, 2004; Walmsley, 2004).
Service users who can’t work go along to these meetings where everyone else is being paid as part of their salary to be there and we are not paid and we sometimes are not even paid expenses. This is hardly equality. It often isn’t done with any intention to discriminate service users, which is the sad thing. Often they just don’t have a clue about participation so they don’t take into account payment when they are putting the budget together and then it is too late and they don’t have the money. It is ignorance and a lack of thought. (Service user)
Organisations can help overcome barriers to individual participation by developing clear and efficient systems for minimising the costs to service users of participation. This is about more than the actual monetary value because it demonstrates a commitment to equalising relationships between service users and professionals. An important starting point is having a policy for participation that makes things clear from the start and spells out what will be paid and how. This helps to prevent differences in the way that people are treated and reduces the difficulties that might be caused by informal arrangements when there are organisational or staff changes.
See Practice Example for Southern Health and Social Services Board.
Linked with this, is the need to have a policy for paying support workers, and/or personal assistants, and reimbursing the expenses of volunteers if they are needed to help the person participate, or to cover replacement support costs for family carers.
See Practice Examples for Bromley Health, Social Care and Housing Partnership Board, MS Society, People in Action (Leeds).
It is vital to make sure that expenses are paid as quickly as possible, either by fast-tracking claims through the organisation or by bringing along cash to reimburse people on the day. Service users should be reminded in advance if they need to bring receipts or provide invoices.
[What’s needed is] changing the benefits system so people can get involved without fear and worry. It is undermining participation and people’s chance to get involved now. (Service user)
- There is considerable variation in the way that organisations deal with the issue of payment and there are many examples of unfair treatment where individuals work for no payment alongside others who are being paid (Turner & Beresford, 2005). For example, service users and carers are increasingly involved in professional education but may receive only token payments for their involvement (Bamber & McKeown, 2003).
- The question of payment is an extremely complicated area and solutions will depend on the personal circumstances of individual service users. The Department of Health (2006a) has issued a guide on reimbursement for service users which outlines good practice in terms of paid involvement and gives an overview of the current regulations on permitted work for people on benefits.
- While some organisations offer payment in kind, such as complimentary copies of newsletters, reports, or other publications, a meal or refreshments, or the opportunity to take part in a conference, training or other activity, these may be defined as taxable benefits by the Inland Revenue and so this needs to be considered if payments in kind are to be made (Faulkner, 2004).
- The complexities of payment should not be used as an excuse to avoid supporting service users who want to move into paid employment as consultants, researchers, or advisors.
Devolving budgets to service user organisations
Power is seen in monetary terms and service user organisations don’t have much money. It’s another reason why service user organisations should be put on a better financial footing. (Service user)
- Most of the organisations included in the Practice Examples had developed policies for reimbursing expenses and, to a lesser extent, support costs. Fewer organisations had devolved budgets to service users so they could control how the money was spent themselves.
This can range from flexible employment policies to providing quiet areas for people to rest or take time out. Similarly, there should also be recognition that service users with conditions which have periods of remission, may have times when they would like to increase their involvement.
See Practice Example for MS Society.