Our inquiry

1. The number of adults with learning disabilities in the United Kingdom is growing. People with learning disabilities are generally living longer. More premature babies and children with learning and other disabilities are surviving into adulthood.[1] Recent figures show that spending on social care for adults with learning disabilities doubled during the past decade, yet there has been a growing campaign recently for increased funding as services struggle to cope with demand.[2] The first national survey of people with learning disabilities found that adults with learning disabilities are often socially excluded, have little control over their own lives, and were "more likely than others to have bad things happening in their lives".[3]

2. Human rights apply to everyone. We have chosen in our recent thematic inquiries to focus on groups which are particularly vulnerable; whose members may have difficulty speaking up for their rights; or who may have difficulty understanding when their rights under equality, human rights and other legislation are being breached. Over the past two years, stark reports on the treatment of adults with learning disabilities in health and social care settings have been published, by the Healthcare Commission and the Commission for Health and Social Care, Mencap and the Disability Rights Commission. Each of these reports raises substantive issues about the compatibility of such treatment with human rights and equality law under the Human Rights Act 1998 ("HRA") and the Disability Discrimination Act 1995 (as amended), the European Convention on Human Rights ("ECHR") and other international legal standards. We most recently considered these issues in relation to the treatment of older people in healthcare, in our Report on Older People in Healthcare.[4] In this inquiry, however we have chosen to consider a broader range of issues of relevance to adults with learning disabilities.

3. The extent to which the rights of adults with learning disabilities are currently being respected raises fundamental issues of humanity, dignity, equality, respect and autonomy: all key human rights principles. It also raises other important issues of substantive human rights law such as the right to life (as guaranteed by Article 2 ECHR), the prohibitions on inhuman and degrading treatment (Article 3 ECHR) and unjustified discrimination (Article 14 ECHR), and the right to respect for private and family life (Article 8 ECHR). The treatment of adults with learning disabilities by the criminal justice process may engage the right to a fair hearing (Article 6 ECHR) and due process, and the right to liberty (Article 5 ECHR), rights that are also protected by our common law. A number of inquiries and campaigns about the rights of adults with learning disabilities have recently adopted the title "A life like any other", or variations on that theme.[5] We have decided to use this inquiry to question whether we are meeting our obligations to respect the human rights of adults with learning disabilities and whether, as a result, adults with learning disabilities in the United Kingdom are likely to be able to lead ordinary lives.

Learning disabilities or learning difficulties?

4. This inquiry also challenged us as parliamentarians to ensure our inquiry was accessible and relevant for adults with learning disabilities. We made the early decision that we wanted to take evidence directly from a range of people with learning disabilities and to reach as many people as possible during our inquiry. We wanted to work in a way which was accessible and enabled people to tell us their views. A summary of this Report and its conclusions and recommendations is being published in Easy Read, and in an audio format, as part of this process.

5. The first problem we faced was whether to talk about "learning disabilities" or "learning difficulties". We know that some people prefer the term "learning disabilities" and others prefer the term "learning difficulties". We have used the term "learning disabilities" in the title of our inquiry to reflect the language used by the Government in its policy papers and used by the Disability Rights Commission in its work. We considered that this term would avoid any confusion with specific learning difficulties associated with education such as problems faced by children and adults with dyslexia. We used the term learning difficulties when working with witnesses who used this term themselves.

6. We are aware that there are a number of debates over the definition of learning disability. We did not adopt a specific definition in our call for evidence, but have been guided in writing this report by the definition set out in Valuing People, the English learning disability White Paper, issued by the Department of Health in 2001, namely that learning disability "includes the presence of:

• a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with:
• a reduced ability to cope independently (impaired social functioning);
• which started before adulthood, with a lasting effect on development."[6]

7. This definition covers people with an autistic spectrum disorder who also have learning disabilities, but excludes those with average or above average intelligence who have an autistic spectrum disorder, like Asperger's Syndrome.

Terms of reference

8. We called for evidence on how human rights principles were relevant to the treatment of adults with learning disabilities and how they were treated in their daily lives. In particular we sought evidence on the following issues:

• the provision of public services such as healthcare, education, housing and welfare benefits to people with learning disabilities and on the ability of individuals to access such services and the quality of provision;
• the possibility for adults with learning disabilities to form and maintain personal relationships with others (such as partners, parents and children) and the positive obligations of the state which arise in this context;
• the opportunities for people with learning disabilities to participate in the life of their local community and the state's obligation to facilitate participation; and
• the potential of the United Nations Convention on the Rights of Persons with Disabilities ("UN Disability Rights Convention") to promote the rights of adults with learning disabilities.

Evidence and visits

10. In the course of this inquiry, we have received almost 200 separate pieces of evidence and correspondence from a wide range of relevant charities, service providers, non-governmental organisations, carers and families, Government departments and, importantly, directly from adults with learning disabilities. We are grateful for all of the evidence we received. Most of this evidence is published in full in a separate volume to this Report. However, a number of the submissions we received contained detailed information about the experiences of people with learning disabilities or their families; some referred to individual cases and challenges in which they had become involved; a significant number of submissions raised recurring themes. Some people wrote to tell us that they wanted to know more about human rights or to tell us about the support they received. A summary of the themes and stories emerging from the correspondence which we have not published is contained in an Annex to this Report.[7]

11. We commenced our inquiry by taking advice from the British Institute for Learning Disabilities on how we might make the oral evidence sessions more accessible for witnesses with learning disabilities. The transcripts of our oral evidence sessions are published, as usual, with this Report. In addition, a detailed note of an informal meeting with witnesses is published in an Annex to this Report.[8]

12. In October 2007, we met with adults with learning disabilities, their supporters and families in a number of different settings. We visited Lewisham College, where we spoke with learners and staff in their School of Supported Learning; we met with members of a local KeyRing Housing and Support Network in South East London; and we visited people with more complex and profound learning disabilities at an HFT (Home Farm Trust) resource centre in Bidford-upon-Avon and at home, in supported accommodation, in Evesham. We also met informally with Lambeth People First Self-Advocacy Group and their supporters at the Palace of Westminster. We are very grateful to all those who assisted us in the course of our inquiry.

Structure of our report

13. In Chapter 2, we consider the policy framework within which services for people with learning disabilities should be provided. In Chapter 3, we consider the relevance of human rights principles for people with learning disabilities. Chapter 4 examines the broad scope of the evidence we received during our inquiry and identifies the key concerns raised with us; it explains how each of these concerns has implications for the human rights of adults with learning disabilities; and considers whether in some circumstances a better understanding of human rights standards could lead to a better life experience for adults with learning disabilities. In Chapters 5, 6, 7, and 8, we look at four areas where human rights concerns were particularly acute: the treatment of adults with learning disabilities in health and residential care settings; the treatment of parents with learning disabilities and their children; access to justice for people with learning disabilities; and the barriers to an ordinary life routinely confronted by people with learning disabilities. In Chapter 9, we consider the practical application of human rights principles to the treatment of adults with learning disabilities and the role to be played by central and local Government and the Equality and Human Rights Commission in promoting the creation of a culture of respect for the human rights of adults with learning disabilities. We set out our principal conclusions and recommendations at the end of this Report. An analysis of the relevant human rights standards is contained in an Annex to this Report.[9]

Specialist advisers and acknowledgements

14. We record our particular thanks to Professor Linda Ward and Camilla Parker, our Specialist Advisers for this inquiry.

15. We also wish to thank Mencap for their assistance in the preparation of our first Easy Read Press Notice and the British Institute of Learning Disabilities for their advice on making our inquiry more accessible to people with learning disabilities.

2   Care Services Improvement Partnership, "Getting to grips with commissioning for people with learning disabilities", April 2007. Back

3   National Statistics and Health and Social Care Information Centre; Adults with Learning Difficulties in England 2003/04, published on 28 September 2005. ("The National Survey"). Back

4   Eighteenth Report of Session 2006-07, The Human Rights of Older People in Healthcare, HL Paper 156-I, HC 378-I. Back

5   See for example, the Community Care Magazine Campaign: Community Care, 17 May 2007 ("A life like any other"), Healthcare Commission, "A Life like no other: A national audit of specialist inpatient healthcare services for people with learning difficulties in England", 3 December 2007. Back

6   Valuing People, paras 1.4 - 1.7. Back

7   Annex 2. Most of this unpublished material can be consulted in the Parliamentary Archives. Back

8   Annex 3. Back

9   Annex 1. Back