Recent decades have seen a greater emphasis on service user participation than had previously been the case (Beresford, 2001). In the past, decision making in social care and associated policy development had been led by practitioners, politicians and academics, with service users and citizens having minimal say in what services they received and how services were provided (Beresford, 2001). This study examines how active participation of service users has developed over the last 20-30 years and how the progress made in encouraging participation has benefited individuals and the overall quality of service provision.
For the purposes of this study, there is primarily a focus on the service user as the individual who engages in active participation although it should be accepted that family members and carers have their own separate and sometimes conflicting needs for participation (Roulstone et al., 2006). Service users are described by Beresford (2001, p.9) as “people who receive or are eligible to receive social care services” and it is important to note that people can self-identify as a service user. However, active participation of people outside of the health and social care arena will also be discussed as there is evidence that participation in community activities can be beneficial to citizens who are not in receipt of social care services.
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Policy and Legislation
A shift towards more active participation has a basis in the policies and legislation introduced under New Labour. Government took a view that greater participation would be a way of increasing the number of citizens who would be active citizens (Millward, 2005) and the Health and Social Care Act 2001 was at the forefront of extending service user choice and the enablement of people to decide on their own services through schemes such as Direct Payments. Other relevant legislation and guidance has included the White Paper Our Health, Our Care Our Say (Department of Health, 2006); Valuing People (Department of Health, 2001); the National Service Framework for Older People (Department of Health, 2001). With specific reference to social care, Putting People First (2007) set out a commitment to closer working between central and local government, and the health and social care sectors, alongside better partnership working with service users and carers. More recently, under the Coalition Government consultations such as A vision for social care: Capable communities and active citizens (DH, 2010) and Caring for our future: Shared ambitions for care and support (DH, 2011) have continued to encourage participation with an expectation that it can help people to live healthier and more independent lives. It is evident from cross-party support that active participation is something supported across the political spectrum. Participation is seen as something that encourages better citizenship and it can also be argued that it offers a form of low level democracy. Participation is also something that pulls back direct state intervention in people’s lives.
What is Active Participation?
Active participation can be defined in a number of ways and can be related to both individuals who are in receipt of health and social care services and those who live independently in the community without service provision. Definitions such as ‘consultation’, ‘partnership’ and ‘involvement’ are often used to explain participation (Roberts, 2002). In social care terms participation might be seen as allowing and individual to have control over day to day decisions such as what time meals would be taken or when personal care services would be delivered; at a more strategic level, participation might involve giving a say in how services are commissioned and delivered to a wider group of service users (Mordey and Crutchfield, 2004). Service user consultation groups or local forums for citizens to discuss how services are prioritised and delivered are examples of this broader level of active participation.
The Social Care Institute for Excellence (SCIE) has developed some useful definitions for participation. It uses the word participation as being “to talk about actively working together on a particular project or activity” (SCIE 2004, p.2). It also sets out a number of key values and principles which should inform participation work. These include a belief in citizenship; the promotion of empowerment; developing a human rights culture in social care; giving equal priority to all opinion; developing new approaches to participation; being inclusive; and making it clear what people can and cannot be involved in (SCIE 2004). The final point is important. Active participation is rightly seen as a positive development for service users but there still has to be a line where organisations can make decisions irrespective of service user participation. Adult safeguarding is an example of this, where sometimes decisions may have to be made without the participation of an individual in order to protect his or her welfare. Nonetheless, the link between participation and social work values is a positive one. It suggests that participation is grounded in a commitment to human rights and equality, something that should bring benefits to the individuals who take up the opportunity to participate.
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SCIE also draws a distinction between the different types of participation that can be found in social care, suggesting that participation can range from providing information and actively listening to service user views, to providing assistance or even financial support to allow people to research or provide services (SCIE, 2004). Participation can also be applied to a range of service user groups including older people, children and families, people with disabilities and people with drug and alcohol misuse problems (SCIE, 2004).
The Personalisation Agenda
The personalisation agenda in health and social care has been critical in promoting the idea of active participation. Personalisation is primarily a new way of providing social care support which puts the person requiring a service at the centre of the assessment process and allows individuals and their carers a real say in identifying their needs and making choices about how services will be provided (Carr, 2010). It recognises that people are individuals with diverse strengths and preferences, and aims to empower people through better provision of information and advocacy, early intervention to get the right support in place and also recognising the rights of carers (SCIE, 2012). Given these aims of personalisation, one of the key benefits for the individual would be having greater control over services provided and consequently there being a greater chance of the rights services being provided, with positive outcomes. Another key point about personalisation and participation is that it still has to be facilitated by agencies and policy makers. As much as people may want to participate in service delivery or more simply just in community work, they still require the tools to do so and also the autonomy to make their own decisions.
Benefits of Participation
Greater participation in how services are delivered can bring a number of benefits to service users. Active participation can help develop more customer/service user-friendly versions of existing services and give individuals more say in how their services are run and how they can access them. Participation gives service users – who are also tax-payers – a greater say on how money is spent on services in their area and also helps individuals become co-designers and co-producers of the services that they use (Leadbetter, 2004). At a wider level, it can be argued that active participation allows for self-organisation by communities, rather than service provision being dictated by external agencies or distant central government.
Participation also supports the development of greater citizenship. Participation and influence over how public funds are spent can be seen as being an important part of the democratic process and the concept of citizenship lends itself to ideals of equity and collective provision which are embedded in public services. For the individual, participation in public service can increase a sense of civic attachment and impress on the individual what it means to be a member of a democratic society (Leadbetter, 2004).
Participation and Young People
Discussions around personalisation and participation generally have an emphasis on the participation of adult service users but active participation can also have a positive impact for young people who access social care support and services. Legislation and guidance including the Children Act 1989 and the UN Convention of the Rights of the Child have a focus on the child’s right to participate in decision making and there are a number of benefits for both young people and the organisations that provide services. For young people, active participation can help them gain new skills and experience, develop self-confidence and influence the decisions that affect their lives. They can develop social networks and begin to understand how organisations work. Participation can also quite simply be fun for young people, and it can help them feel valued and empowered (Wright et al., 2005).
Active participation can be particularly beneficial for children and young people who might be consider as disadvantaged or vulnerable. Groups such as looked after children, young offenders, care leavers, young carers and gay and lesbian young people are easily marginalised and many agencies tend to direct them rather than engage with them. They face a number of barriers to participation such as a lack of motivation to engage; mistrust of adults and a feeling that their views will not be listened to because of their past experiences (McNeish, 1999).
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Research studies highlight a number of positives from individual participation projects which could be used as a benchmark for future initiatives. In Hampshire for example, a Care Action Team (CAT) was established bring together members and officer from the County Council to work with people who were in, or had been in care. Regular meetings to gather the views of young people led to a number of improvements in how services to young people were delivered. These included development of a new sleepover policy making it easier for looked after children to spend the night with friends; involvement of young people in the inspection of children’s homes, and a Children’s Homes Education Policy which improved the educational support for looked after children. A more general improvement from the establishment of the CAT was that young people developed a greater sense of worth and awareness that they were not alone in their experiences (Wright et al., 2005).
For organisations, encouraging active participation by young people can also bring improvements to service delivery. It helps them become more responsive to the needs of children and young people; it increases the accessibility of organisation and makes them more efficient in providing effective services (Wright et al., 2005).
Active Participation in the Community
Active participation has benefits for society as well as the individuals involved. We live in a nation with an ageing population and many older people have greater expectation of both opportunity and support from public services in later life. An Audit Commission report (2004, p.2) stated that “the shift in proportion, composition and attitudes of the older age group has profound implications for public services. We need to start taking action now to shape things for the better”.
Active participation does not only relate to people who are in need or receipt of social care services however. Participation in the community can also benefit individuals who do not require social care provision. Many older people for example, benefit from active participation in their local communities and government studies have suggested that active participation is linked to the overall well-being of individuals (Audit Commission, 2004).
A number of strategies can be developed to encouraged independence and participation for older people. These can include work to support people ensuring that they have a safe comfortable home, and live in a neighbourhood close to friends and amenities. Good public transport networks allow people to get out and about whilst social and leisure activities promote social inclusion. Information for older people on how to access amenities encourages active participation as do healthy living initiatives which help people to stay active and healthy (Audit Commission, 2004).
Active participation for older people is also a way of tackling the ageism that exists in society. Participation allows people to feel valued and able to challenge stereotypes that older people offer less to society that younger people. Participation allows them to have a say in decisions made about them both as individuals and as a wider group in society.
A Department of Pensions report published in 2009 identified LinkAge Plus (LAP) pilots as initiatives which enable older people to become more active in their communities (Willis and Dalziel, 2009). Schemes to give opportunities to socialise through social, leisure and training activities help to address wider community and social wellbeing outcomes through the creation and development of social capital. Examples might include over 60s clubs providing activities ranging from Tai Chi to adult art classes. Network Centres establish social networks for older people which improve confidence and well-being and the DWP report concludes that people are “empowered when new or stronger bonds are created between themselves and the community in which they live” (Willis and Dalziel, p.45).
Other examples of active participation demonstrate older people have an active role in local decision making and commissioning of services. The Gateshead Older People’s Assembly for example was funded to assess the appropriateness, accessibility and effectiveness of services for older people in the region. The benefits were twofold – the Assembly allowed a number of individuals the opportunity to become involved in stimulating research and study activities, whilst the conclusions were feedback into local service procurement, ensuring that the views of the wider population of older people were being heard (Willis and Dalziel, 2009).
Criticisms and Obstacles
Whilst most of the evidence points towards active participation being a positive opportunity for individuals there are some concerns about how it might delivered and that there will be obstacles to real and effective active participation. Some commentators suggest that the whole personalisation agenda will simply tie up social workers in drafting support plans and assisting with finances, rather than providing a more person-centred social work support, whilst there are also concerns that the introduction of personal budgets will be seized upon by individual who have motives other than the well-being of services users (Needham, 2010).
There are also concerns that personalisation is simply a way of implementing public sector budget cuts and introducing a level of consumerism into social care for vulnerable people. The emphasis on individuals managing their own finances could possibly lead to financial abuse or simply people mismanaging their personal budgets (Needham, 2010). Even outside of social care, a cynical view of encouraging people to find their own ways of participating in the community could be that it is simply a way for the state to withdraw from provision of leisure services and have people fund and manage them themselves.
A final concern around active participation is that it could lead to discrimination against vulnerable groups if they were to become more active and visible in the community. Services users with physical and learning disability who try to manage their own care in the community may be probe to physical, emotional or financial abuse by neighbours and Burton et al. (2012) also suggest that disabled people trying to live ordinary lives in the community, and participating in community activities, may cause some hostility.
The evidence available suggests that participation is a positive thing. The applies equally to participation in service delivery and review for those in need of social care, and to those in the community who simply wish to remain active members of the community.
In social care, the personalisation agenda and the move towards self-directed support and personal budgets has promoted active participation. It puts individual service users in greater control of what services they receive and allows services user groups to have a greater say in how services are commissioned and delivered. This benefits individuals as it allows them to have a real say in how they receive support; it should also assist the organisations that provide services to develop and improve the services that they provide. Similar principles apply in social care provision for children and young people, as active participation allows their voices to be heard and should give decision makers a better understanding of what is needed to support vulnerable young people
It is important to note that active participation in social care can be linked into some basic social care values. Good social work practice should involve putting the individual first (SCIE, 2012) and initiatives such as personalisation and can help demonstrate a commitment to respect for the individual and self-determination. Social workers that encourage active participation will generally be demonstrating a person-centred or child-centred approach that will enable an effective and non-discriminatory relationship with the individual that they are trying to help. Again, this is further evidence that active participation is largely beneficial to the individual.
Active participation for people outside of the social care system also appears to have a positive effect on people’s lives. It promotes social inclusion and the evidence suggests that being active in the community promotes well-being and helps people to live more fulfilling lives.
In a modern, democratic society, there is no reason why active participation should not be commonplace. It demonstrates that as a society we value the views and opinions of all citizens and that when people need support, they can have a say in how it is provided, rather than the state simply imposing a service that may not meet the individual’s need. By encouraging more general participation in society, active participation also demonstrates that we value the input of all members of society into the community, regardless of age or disability.
Cynics might argue that active participation is a way for local and central government to save money and pass the onus for some tasks back to service users and the local community. Whilst their might be an element of truth in this, the reality is that active participation is largely a positive development. Many citizens want to participate in decision making both for themselves and their local communities and the evidence suggests that this participation produces good outcomes.
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