Human Rights and Values

Advocacy/self advocacy

Advocacy/Self Advocacy

Advocacy is the process of speaking up about an issue that is important to the individual. This can either be self advocacy, i.e. where the individual speaks on their own behalf, or citizen advocacy, where a volunteer from a local advocacy group speaks on the individual's behalf. From time to time, an issues advocate is required to address a specific issue.

Background

People with a learning disability can be vulnerable as they have an intellectual disability and can be at risk of social discrimination. In the past people's civil rights have not been safe-guarded and have even been abused as a direct result of trying to offer protection. It is also evident that as a group of people they have not had either the opportunity or the skills to be able to speak for themselves. Individuals powerless in their care setting have not had much historical experience in being invited to participate in decisions regarding their care or treatment.

Advocacy services first started in the USA in the early 1980s, and since then there has been a growing movement to provide a range of advocacy opportunities for people receiving care and support services in the U.K.

Advocacy - Government policy

Advocacy forms one of the Government's central themes in the White Paper 'Valuing People' published in 2001, where the future for learning disability services are considered. Effective advocacy can transform the lives of people with learning disabilities by giving them the opportunity to express their wishes and aspirations and make real choices. Not only is increased personal advocacy seen as important, but also a wider partnership in policy development, where service users and their carers' views are directly taken into consideration over service planning and delivery to meet individual needs.

Types of Advocacy

The advocacy movement initially developed slowly in the U.K.  In part this was due to the limitation of funding available. However, because it is now more widely recognised as an essential feature for the progress and support for people who have learning disabilities (and Government policy), more local advocacy groups are becoming established.

Advocacy groups are typically based in the voluntary sector. Although often only having a small number of paid employees, most of the long-term one to one support with some users is generally undertaken by volunteers. Groups have evolved on an individual basis and they vary in their composition and the way they undertake the task of advocacy. Advocacy is generally promoted in the following ways:

• Self advocacy
• Citizen advocacy
• Instrumental or issue based advocacy

Self Advocacy

Self Advocacy is people being able to speak up for themselves. They may need the support of others (such as friends or their peer group) on occasions to do this. People can be a part of a local group promoting self advocacy like the 'People First' groups. They are a good way for people to support each other and help to build personal confidence so they can more easily speak up for themselves. Such groups can also provide a means for service users to offer consultative or representative opinion to an organisation on service delivery or developments.

Citizen Advocacy

This is a partnership between two people. The prime purpose is generally to establish friendship between a person with a learning disablility and someone from the local community (generally not a care worker). At some later stage during this friendship, there may be a situation where the person with a learning disability may need the support of their advocate partner to make their views known. This expression of views to an advocate is more easily accomplished when based on friendship, trust and total independence from any service provider organisation.

The advocate is usually a volunteer vetted by a local advocacy group. They have been matched with the person by virtue of their interest to support that particular individual. There is usually some degree of shared interests. A number of informal meetings take place to see if people like each other before any decision to match is made. The person with a learning disability, of course, has the final say regarding who their citizen advocate would be.

Citizen advocates are usually:

• Volunteer and unpaid
• A member of the local community
• Not a relative
• Not a person from a service provider

The citizen advocate should:

• Base their citizen advocate-partner relationship on friendship, trust and confidentiality
• Identify and help represent their partner's choices and decisions, and not put any influence of their own upon them
• Ensure their loyalty is to their partner alone

The key features of the citizen advocate are:

• The relationship is not time limited and lasts as long as either party would like
• They are not there to take over the role of a professional, such as a nurse or social worker, or make up for gaps in services which should otherwise be provided
• They are not there to referee a dispute or argument

Instrumental or Issue Advocacy

This type is also sometimes called by a collection of other names such as 'Paid Independent Advocacy', 'Professional Advocacy', 'Crisis Advocacy', and 'Case Advocacy' all of which are somewhat similar in their role.

As is evident from the title, this advocacy usually takes place where there is a clear issue to be addressed. Such issues may require a particular expertise for an advocate to assist a person e.g. Social Security Benefits Law, Housing Law, Immigration Law or knowledge of Social Welfare Legislation. The process of advocating comes to address a specific problem and once resolved will then come to an end. Because of the level of complexity or expertise required, the advocate could be a paid official or professional e.g. solicitor or welfare rights consultant. This form of advocacy does not replace the likes of Citizen Advocacy or Self Advocacy but works alongside it.

Relationships between professionals, organisations, carers and advocates

Professionals, organisations and even family carers need to recognise the role and work of advocates in independently supporting people with learning disabilities. An individual may be living in a care or supported setting or with their family and can still avail themselves an advocate. In all cases the relationship is confidential to the person with the disability and their advocate partner. Such partnerships can grow into long-term friendships which give much to supporting and safeguarding people and their interests, particularly if they live in a long-term care setting.

Advocates will generally have some initial training about the nature of advocacy work and will be told how to perform the main responsibilities of their role with their partner by their Advocacy project. However, it should be recognised people will bring their own personality to the situation and thus advocates will approach their roles and friendships differently. The Advocacy project will generally monitor the partnerships and support advocates should they need it.