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Chapter 2: What is independent advocacy?
Advocacy:
- IS about standing alongside people who are in danger of being pushed to the margins of society
- IS about standing up for and sticking with a person/group and taking their side
- IS a process of working towards natural justice
- Is NOT counselling
- Is NOT befriending
- Is NOT care and support work
- Is NOT consultation
- Is NOT telling or advising someone what to do
- Is NOT speaking for people when they are able to express a view
- Is NOT mediation
Why there is a need for independent advocacy
Some people in society are treated differently from others for many reasons including their disability, gender, age, ethnicity or religion. Many people with learning disabilities often have little control over their own lives. This can mean that they are unlikely to be able to fulfil or demand their basic human rights.
Independent advocacy aims to support people to become active and valued members of society. Independent advocates are in a good position to do this because they do not have any conflicts of interest or their own agenda.
Independent advocacy is about:
- helping people to have their say and to be heard
- safeguarding people who are vulnerable and discriminated against or whom services find difficult to support
- empowering people who need a stronger voice by enabling them to express their own needs and make their own decisions
- enabling people to gain access to information, explore and understand their options, and to make their views and wishes known
- speaking on behalf of people who are unable to do so for themselves
- being independent - separate from service providers and funders
This means that the advocate or advocacy organisation:
- is not connected with carers or services that have a strong influence on the life of the person being supported
- does not focus on their own personal interests
- can concentrate solely on supporting his/her partner or needs of the group in the case of group or collective advocacy
The aim of independent advocacy is to:
- help people have their say
- add weight to a person's ideas, wishes and opinions
- challenge attitudes and perceptions
- socially include people
- protect people's rights
Independent advocacy is important because:
Individuals may experience
- social isolation and exclusion/prejudice
- not being listened to by services
- a lack of independent support
- a lack of skills, confidence and experience
- a lack of community contact with services
Independent advocacy works by:
- supporting people to represent themselves
- being loyal
- being focused on what needs to be done
- following the person's agenda
- being involved and being prepared to act
- working with those most at risk
- acting outside of the service system
How independent advocacy organisations are structured
Board of Directors/Management Committee
Independent advocacy organisations are usually governed by either a Board of Directors or a Management Committee, whose sole responsibility is the management of that advocacy organisation. Board/Committee members should be independent of service providers and/or funders in order to ensure that the organisation is structurally independent of those bodies.
Staffing structure
Staff in an independent advocacy organisation, whether paid or volunteer, in as much as possible should not be employed in other organisations that provide services or funding to that advocacy organisation. This is to ensure that the advocacy organisation and those who work as advocates are independent, and to prevent the potential for conflict of interest.
Managing the potential for conflict of interest
It is recognised that in certain areas of Scotland, the main employers are the NHS and the local authority. Independent advocacy organisations in these areas, staff (paid and unpaid)/citizen advocates/management committee members may be employed by one or other of these organisations. It is important that there is a policy in place to manage the potential for conflict of interest.
General funding
Independent advocacy organisations receive their core funding from the local authorities and NHS Boards. Organisations access other funding from a variety of charitable and grant-making trusts and agencies. From October 2005 with the introduction of the Mental Health (Care and Treatment) (Scotland) Act 2003, there will be responsibility placed on all NHS Boards to ensure all individuals - children, older people and other adults - with mental illness, learning disabilities, dementia or personality disorders have access to independent advocacy.
Types of independent advocacy
Citizen advocacy
- encourages ordinary citizens to become more involved with people in their communities who might need support
- is based on trust between the person being supported (advocacy partner) and the advocate
- means the advocate's loyalty is to the person being supported not to the advocacy project
- means the advocate is not paid
- means the advocate will build a personal relationship with their advocacy partner
- means the advocate will support their advocacy partner using their natural skills and talents rather than being trained for the role.
- means the advocacy relationship will be on a 1 to 1 basis and long-term.
A citizen advocate is 'A valued citizen, who is unpaid and independent of human services, creates a relationship with a person who is at risk of social exclusion and chooses one or several of many ways to understand, respond to, and represent that person's interests as if they were the advocate's own, thus bringing his/her partner's gifts and concerns into the circles of ordinary community life.' (John O'Brien, Georgia Advocacy Office 1987)
An example of a situation in which citizen advocacy could work to help an individual lead a valued and fuller life would be:
Matthew |
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Matthew has an autism spectrum disorder. He has been living independently for the last 10 years. His family had great difficulty in understanding his condition and they no longer get on. Matthew was involved in a local community project aimed at improving the relationship between different minority ethnic groups in the area. Some local residents would shout abuse at Matthew and graffiti was daubed on his house. The police were called but no further action was taken. Since this incident the abuse has continued. More recently, Matthew has been physically attacked within his own home and hospitalised. Matthew finds it difficult to co-ordinate information from different people, therefore it is difficult for him to pursue complaints with the police and the local authority. He has no-one to support him in pursuing complaints or find information that might help him. Matthew is becoming increasingly frustrated by his situation and still feels at risk of verbal and physical attacks. |
Advocacy can widen and deepen someone's access to other non-health and social care services within the community, as shown by Jenny's story:
Jenny |
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Jenny has been living on her own for four years after a considerable length of time within a hospital environment. She continually attempted to access the local leisure centre but every time she went she was told by reception staff that she could not use the equipment or facilities without a support worker present to 'supervise' her. Jenny was getting increasingly upset and alarmed about this situation and mentioned it to her advocate. Together they decided how they were going to tackle the situation, and together they went and spoke to the manager of the leisure centre. As a result the staff of the centre underwent awareness training, and Jenny, along with her friends, can independently and without obstruction use the leisure facilities. She has said that without her advocate's help she might still be being turned away. |
Individual professional advocacy
This can be provided by people who are paid or working on a volunteer basis. It:
- aims to support people to represent their own interests.
- aims to represent the views of individuals if the person is unable to do this themselves.
- provides support on specific issues.
- provides information not advice.
- provides short or long term support.
- an advocate may support several people at any time.
Freda |
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Freda is a 35-year-old woman with a learning disability who was diagnosed with dementia 12 months ago. Due to family circumstances a decision was made that Freda should move to a nursing home. Eventually Freda was moved into a unit that specialised in dementia. The other residents in the unit were all in their eighties and were in the later stages of dementia. Freda's social worker referred her to the independent advocacy organisation, and Susan the advocate began working with Freda. At first this was difficult because Freda's verbal communication was very limited but as Susan got to know Freda she found out that Freda was very unhappy about living in the unit and wanted to live on her own in her home town, not far away. Susan spoke to Freda's care team about the unit being inappropriate for Freda's needs. Eventually Freda's care team agreed that the unit was inappropriate for Freda and began the process of arranging more appropriate accommodation. Following several review meetings Freda told the care team, through Susan that the sheltered house that she had been offered was where she wanted to stay. As this is in the neighbouring local authority area Susan worked with Freda to find another advocate to support her for the first three months after the move. Freda's life has changed a lot, she is glad that she met Susan because without her advocate Freda thinks she would still be at the dementia unit. Freda misses Susan but she has a new advocate who is just as good. |
Group advocacy
- is a group of people who are all facing a common issue who get together to support each other.
- the group may take the form of a patients' council in a hospital, a residents' forum in a care home or a group in the community.
- individual members of the group may support each other over specific issues
- the group as a whole may campaign on an issue that affects them all
Some of the benefits of group or collective advocacy are:
- An issue may arise that is to do with the planning of services and their impact on a group of people. Therefore the collective voice can be stronger than that of the individual. Groups are difficult to ignore.
- Raising a difficult issue can be an isolating experience for one person. The group experience can reduce isolation and provide support.
The Patients' Council |
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The Patients' Council was set up a few years ago by a group of people at a learning disabilities hospital that was facing closure. At first the group faced lots of problems because not all the staff in the hospital understood why they were formed or what they did. The Patients' Council has a support worker who organises meetings, papers and anything else the Council is working on. The first group of people who were moved out of the hospital into the community were not really consulted about where they were going to live or who with. The Patients' Council has made sure that when a persons move from the hospital into the community is being planned that they are involved from the beginning. The person is consulted about everything and has choices about their future. The Patients' Council quickly began working to improve the lives of the people in the hospital. For many years they had wanted access to drinking water on the wards, the hospital management had said that the hospital could not afford water coolers on every ward and that people could get water from the patient toilets at any time. Eventually the hospital management agreed that getting water from the water coolers was more dignified and respectful and now all the wards have water coolers. The Patients' Council has changed the lives of the hospital residents in other ways too, its given people a lot more confidence to speak up and challenge the things they would not normally challenge. Some people on a ward were unhappy about the way that staff spoke to them, they were not comfortable about challenging these staff or formally complaining about them. Therefore the Patients' Council raised the issue with hospital management, after the complaint was dealt with all staff were given training on attitudes and anti discriminatory practice. The Patients' Council was involved in the delivery of this training. |
Self-advocacy
- is a group of people who are using or have used care and support services in the community, which are provided and/or funded by the local authority or NHS board.
- the group identifies relevant issues and it's the group's point of view that is put forward.
- the group may not have a formal structure and name, and may be self-governing.
Self-advocacy organisations often require substantial resources because many people only become self-advocates after much support to develop their skills and confidence.
Anita |
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Anita is a 36-year-old woman with a learning disability. Anita didn't have many friends and didn't see her family much. Anita regularly attends a day centre for adults with a learning disability. At the day centre she found out about a self advocacy group. Anita was unsure about going to this group because she didn't know what self-advocacy was or what would happen in the group. The self-advocacy support worker, Moira talked to Anita about the group and explained what the group does. Moira said that the group helped to make changes for people with a learning disability by talking to local social work managers. Moira explained that the group decide what they want to talk about and what they should do about things that effect people with a learning disability. She also explained that the group decides who can be a member and come to their meetings. Moira said that she worked for the group to help organise meetings, etc. Moira invited Anita to meet some of the members of the self-advocacy group to find out more. Anita felt comfortable with Moira and decided that she would like to find out more. Anita joined the self-advocacy group, at first she found it difficult because everything was new to her but the other members of the group and Moira gave her lots of support and encouragement and were happy to explain things to her. The self-advocacy group has helped change the way that social workers in the area work with people with a learning disability. Social workers now consult people properly before any changes are made in the way they are supported. Two years later, Anita is still a member of the self advocacy group, she feels ok about speaking at meetings, she has a lot more confidence and lots of friends. |
Action Points |
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- The Scottish Independent Advocacy Alliance ( SIAA) should make information widely available, that explains what independent advocacy is and what the different types of advocacy are and can do. The Executive, NHS Boards and local authorities should also make sure that this happens, under the Mental Health Act statutory agencies now have a duty to ensure that this happens.
- The Scottish Executive should ask local advocacy plans to show how people with learning disabilities and people with autism spectrum disorders will be able to have a choice of advocacy projects and a choice of advocates. Commissioners should ensure that there is choice in the advocacy available. The needs of people with a learning disability and people with autism spectrum disorder should be taken into consideration when commissioning services and people should be involved in the advocacy planning process.
- As part of the Joint Inspections of learning disability services, the Social Work Services Inspectorate ( SWIA), the Care Commission, NHS Quality Improvement Scotland ( QIS) and others should ensure organisations which provide services have systems in place to make sure that staff know what their roles are. People who work in services should know how they can work with independent advocacy projects and with other people who care about the people who use their services. The Care Commission and NHSQIS should consider what information the organisations give out to the people they support, families, advocacy projects and other organisations to help avoid people getting confused about roles.
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