Introduction
The same as you? review of services for people with learning disabilities was published in 2000. It set out a 10-year programme of change that would support children and adults with learning disabilities and autism spectrum disorders (including Asperger's syndrome) to lead a full life, giving them choice about where they live and what they do. People with learning disabilities and family carers were involved at all stages of the review and their experience of life with learning disabilities shaped the vision for the future.
All of the recommendations are based on seven principles:
People with learning disabilities:
- should be valued
- are individual people
- should be asked about the services they need and involved in making choices about what they want
- should be helped and supported to do everything they are able to
- should be able to use the same local services as everyone else, wherever possible
- should benefit from specialist social, health and education services
- should have services which take account of their age, abilities and other needs.
The review was clear about the importance of advocacy in achieving these goals:
Better information, communication and advocacy are central to making any changes and putting the principles into practice. If we are to include people with learning disabilities and autism spectrum disorders fully in our communities, they need to have accurate information so they can make informed choices and decisions about their lives. People with learning disabilities need to be able to have their say. They need to be supported if necessary to make their point.
(The same as you? 2000 p. 42)
Some people with learning disabilities may also have an autism spectrum disorder or other disabilities and medical conditions. As a result, it is important that the full impact of these disabilities and medical conditions are taken account of when trying to meet their needs.
Who wrote this report?
A National Implementation Group was set up in 2001 to assist with the implementation of The same as you?. The Scottish Executive believed that the involvement of people with learning disabilities and family carers in implementing the findings of the review was just as important as it had been in carrying out the review. Members include 5 people with learning disabilities and 2 family carers. The group identified a number of priority areas that would be the main drivers for delivering the change programme. Advocacy was one of these.
When The same as you? was published it said not enough people were getting advocacy:
Many people with learning disabilities and autism spectrum disorders, their carers and professionals recognise that an independent person standing up for the person with a learning disability can help find the right solutions to very difficult problems. Although advocacy is now more widely available, our survey of users and carers found that it did not play a large part in people's lives. This suggests that there is a significant gap in the range of support available. Advocacy allows people to have a greater say in decisions which affect their lives. People with learning disabilities find it useful, and they enjoy the company and friendship that their advocates often offer. A user in our survey said: I just know her - she is my friend. I meet my friend, go out places...Ellen is there and Ellen helps me.
(The same as you? 2000 p. 47)
Recommendation 11 said: 'The Scottish Executive should continue to encourage the development of local independent advocacy services.'
A short life working group was set up to look at progress with the development of advocacy for people with learning disabilities and autism spectrum disorders in Scotland. Membership included people with experience of using and supporting advocacy services. The list of members and the organisations they represented are in Annex 6.
What did the group do?
The group wanted to see how advocacy had progressed since 2000. There have been some developments in advocacy since The same as you? was published. These included the creation of the Advocacy Safeguards Agency ( ASA) and the Scottish Independent Advocacy Alliance ( SIAA). In late 2005 ASA was dissolved. More information about SIAA is in Annex 3.
Other national developments and policy guidance reflect the importance of independent advocacy in safeguarding the rights of individuals and in supporting individuals and groups to be involved in planning their care. These include, the work of the Scottish Commission for the Regulation of Care, the Adults with Incapacity (Scotland) Act 2000, Direct Payments, Fair for All, the NHS Patient Focus Public Involvement Framework, the Mental Health (Care and Treatment) (Scotland) Act 2003. We also looked at policies to encourage all people to be more involved in all aspects of public services, such as the National Standards for Community Engagement. Annex 1 gives more detail on the legislative and policy background in which advocacy is developing.
The group set out to identify progress and good practice and to see what barriers could hinder progress with The same as you? They looked at information that was already available, such as the Advocacy Safeguards Agency's Map of Independent Advocacy across Scotland, information in the 2004-2007 Partnership in Practice Agreements, and the advocacy plans prepared by NHS Boards in 2004. Members gathered stories and case studies about people's experience of advocacy. They also issued questionnaires to people with learning disabilities, people with autism spectrum disorders, family carers and people in local agencies. This information has been used to get a better picture of when and how advocacy is being used, what it is achieving, how widely it is available and what needs to be done to make it more accessible and better understood. It is summarised in Annex 5.
What is this report about?
From the information the group gathered, it was clear that many people did not understand what advocacy is, nor the importance of independent services. There is also a need to understand the difference between consultation, involvement, and advocacy. The stories and case studies also showed how advocacy is not just about health and social care, but that sometimes when commissioning services there is a narrow focus on these issues. Advocacy affects and relates to the whole of life, whether that means accessing housing provision, participation in the local community services, or being safe in the community.
Individuals have a right to be heard and to be involved in all decisions that impact on their lives, regardless of a person's individual background. Independent advocacy is a crucial element of safeguarding and progressing civil and human rights, and of implementing the social justice agenda.
Research shows that people with complex needs are more at risk of a wide range of poor outcomes. These include:
- Less choice about their lives
- Less involvement socially
- Fewer chances of employment
- Less active lifestyles
- Greater health needs
And they are most likely to have difficulty expressing their needs and as a result need more help.
We need to build towards a position where everyone who has needs over and above their learning disability, for example, extra physical or mental health problems, or challenging behaviour, and everyone who is particularly vulnerable has ready access to an advocate.
(The same as you? 2000 p. 47)
Chapter 1 of this report describes how important advocacy is to people with learning disabilities and autism spectrum disorders, and how and when advocacy can make a difference to someone's life. Chapter 2 explains what advocacy is and the different types of advocacy available. Chapter 3 looks at the links between these different types of advocacy, and how they support person-centred services, help to avoid or resolve crisis situations and move people's lives forward. There are a number of issues that will impact on the future development of advocacy. These are also discussed in Chapter 3.
The report sets out some recommendations that aim to encourage people in every sector to take forward the provision of independent advocacy for people who need it. The aim of the report is to deliver better outcomes for people with learning disabilities and people with autism spectrum disorders.
Who should read this report?
This report emphasises the importance of advocacy in all aspects of life, and sets out some information about person-friendly services, policies and law, and useful resources. As well as people who work in health and social care, it is also relevant to people who work in a range of local authority services and associated agencies, including education, transport, lifelong learning, housing, and leisure and recreation.
Adults with learning disabilities and autism spectrum disorders, like any other adults, need learning opportunities throughout their lives. They want to learn skills for work, enjoy leisure activities, improve their skills (especially communication) develop self-confidence and self-advocacy, and learn to use facilities in their local communities.
(The same as you? 2000 p. 47)
This report will also be of interest to people with learning disabilities and their family members.
Acknowledgements
We would like to thank everyone who provided stories and case studies, and who completed our questionnaires. We have used this information in the report but have made it anonymous. It is used to illustrate individual experiences, and does not reflect an evaluation of the types of service referred to.