Self-advocacy enables people with a learning disability to speak up for themselves and to make decisions about how they want to live their own lives. It means they can influence the design and delivery of services. Scie produced Position Paper 6: Supporting Self-advocacy to look at how self-advocacy groups are making a difference to service provision, with an emphasis on the role of supporters and how they can help people to speak up. People with learning disabilities were closely involved in the research and writing of the position paper.
Organised self-advocacy for people with learning disabilities was recognised in the 1960s when people started to group together to challenge the way they were treated and to promote the idea that people with learning disabilities had the same civil rights as everyone else. One result of this movement was a gradual closing of the long-stay hospitals where so many people with learning disabilities had lived. People who had claimed their full civil rights could no longer be put away in institutions. Advocacy organisations tried to ensure that people were involved in decisions about their own futures when they left long-stay hospitals.
However, self-advocacy is not just about having a say in the provision of learning. disability services. People with learning disabilities want to broaden their horizons and find out about the world, so they are supported to speak up in all areas of their lives
Self-advocacy may be supported by an individual on behalf of a person or persons with learning disabilities or by a group on behalf of one or more of its members. Sometimes a person with a learning disability will support others, but will need their own support in a different situation.
High level of support
Supporters need to know the person they are supporting well because it can be difficult to feel comfortable with a stranger. They need to take time to find out how the person communicates, particularly if they need a high level of support. It may take time to develop a close and supportive working relationship.
People with learning disabilities value supporters who:
● Take initiatives but do not take over.
● Are flexible and willing to change.
● Do not shock easily and do not judge.
● Laugh with people rather than at them.
● Can be trusted.
● Can take criticism.
Supporters need training and supervision so that they can meet the needs of those they are speaking for, but not all supporters will have the same training requirements. Training should be led by people with a learning disability and based on values that will make people think about how they give support. Often groups are funded to do specific pieces of work and this does not leave time for personal development.
Support does not just mean helping people to communicate their needs it can often focus on practical things. For example, if the person being supported is attending a meeting, it might involve organising transport, making information accessible and arranging payment for attendance of the meeting.
Supporters often need to support people with problems that happen outside meetings. For example, if a person is being bullied or having difficulties in a relationship, they will be unable to concentrate on the meeting unless they have help to resolve their problems.
When people with learning disabilities are involved in consultations and meetings with people from different organisations, such as those organised by partnership boards, they may feel that it is difficult to be properly involved in real decisions that will influence local or national policy. Supporters need to help people understand what is happening at the meeting, ensure that they are given time and space to contribute and ensure that meetings have ground rules and that these rules are understood.
Although self-advocacy has enabled people with learning disabilities to influence the development and improvement of services, it was felt by people involved in the Scie project that they still do not have much control. Services need to understand this and to recognise that time and money need to be invested in the consultation process so that people can be properly supported to put their views across and therefore be sure that they are making a genuine contribution.