Learning Disability Policy and Practice

This book is about the impact of policy on the lives of people with learning disabilities, and so the best place to start is by listening directly to the account of someone who has experience of the label ‘learning disability’. Julian Goodwin here gives a brief overview of some of the important moments in his own life.

Who are people with learning disabilities? In order to explore that deceptively simple question, this chapter will set out some of the starting points, with some underlying ideas and definitions. It will also offer brief outlines of important societal trends, such as personalization and self-advocacy, which provide reference points for many of the other chapters. Although they will be familiar to many readers, it is important to clarify them for those new to people with learning disabilities, or to the UK scene. They are the backdrop for the book as a whole, and the key points in this chapter are listed below:

Human rights are fundamental to everything else in this book, and so provide the main policy theme which frames this first substantive chapter. In relation to human rights, the chapter will focus on the issues to do with equal access to general health care for people with learning disabilities in the UK.

Inclusion is a key theme in government policy in the UK, where it is often seen as the converse of ‘social exclusion’. Chapter 4 is about inclusion and young people with learning difficulties. It aims to explore what inclusion means specifically within the context of education.

Families have always been central to the lives of people with learning disabilities, at all ages. Although not all people with learning disabilities have support from their families, nevertheless for many it is commonly accepted that family members are the basis onto which other support is built. Family members are there because they love and care for their relative with learning disabilities, and without them the social care system in the UK, and in other countries, would not be able to function. Since they have such an important role, it is vital that families are supported to work in partnership with professionals. While the ‘Voices of Experience’ boxes in other chapters exclusively belong to people with learning disabilities, this chapter foregrounds mainly the voices of parents and families.

‘No man is an island’ wrote John Donne and while we would now want to include women as well as well as men in this quote, it still holds true for most of us. The idea of isolation, of not being loved or being able to give love to others, is a frightening thought. Relationships affect how people think about themselves, and how they are seen by others. That is why the theme of identity is coupled here with an exploration of relationships.

Moving into adulthood can be one of the most stressful times of life for anyone, and it poses particular challenges for people with learning disabilities. This chapter explores person-centred ways of approaching the period of ‘transition to adulthood’.

People with learning disabilities in England are among the very few groups of adults who do not regularly have a chance to choose who they live with. That is why this chapter links the notions of capacity and autonomy with evidence about housing options. This chapter explores decision making about where to live, with a particular focus on the Mental Capacity Act 2005 (MCA 2005) in England and Wales.

The policy theme that has underpinned this book is the mantra of ‘choice and control’. Having examined aspects of autonomy in Chapter 8, the current chapter now turns to the element of ‘control’. People with learning disabilities regularly say that their lives are controlled by others, but current policy about personalized services aims to turn around the relationship between support staff and those they support. ‘We are now the bosses’ says a person with learning disabilities in this chapter. A straightforward goal, but it may be trickier to achieve in practice!

The last policy concept for this book is the overarching concept of citizenship, which brings together many of the previous themes, particularly relating to rights and inclusion. This chapter explores the notion particularly in relation to social inclusion, contributions to communities, and participation in shaping the policies which underpin social and health support.

Overview of the book: how have the ‘big ideas’ in policy fared? This is not a substantive ‘final chapter’, and does not aim to repeat the concluding remarks about citizenship on preceding pages. Instead, the story of policy and practice for people with learning disabilities is an ongoing one, and so the end point of this book is better framed as a snapshot, glancing back at some of the issues raised by various chapters and looking forwards to the future.