1. The treatment of adults with learning disabilities raises clear human rights issues. In this Annex we set out the key human rights standards, deriving from common law, UK statutes and international treaties and explain how they are applicable to this inquiry.[448] We recognise the important relationship between human rights and human rights law, such as the important protection offered by the Human Rights Act 1998 and legislation designed to promote equality and non-discrimination. We summarise briefly, the provisions of the Disability Discrimination Act 1995 (as amended), including the Disability Equality Duty, and the Mental Capacity Act 2005, both of which are directly relevant to the lives of adults with learning disabilities.

2. In this report we refer to 'human rights principles'. By this we mean the concepts of 'fairness', 'respect', 'equality', 'dignity' and 'autonomy'. These are examples of the fundamental principles or core values on which all human rights treaties and other instruments are based. We also refer to a 'human rights based approach' in relation to the work of public authorities. In essence this involves public authorities considering their policies and practices through a human rights lens, in other words taking the principles and human rights standards and applying them to the organisation's objectives and day-to-day activities to assess whether they comply with such principles and standards. The Department of Health and the British Institute of Human Rights describe a human rights based approach in the following way:

In essence a human rights based approach is the process by which human rights are put into practice. It has five key principles:

• Putting human rights principles and standards at the heart of policy and planning
• Empowering staff and patients with knowledge, skills and organisational leadership and commitment to achieve human rights based approach.
• Enabling meaningful involvement and participation of all key stakeholders.
• Ensuring clear accountability throughout the organisation
• Non discrimination and attention to vulnerable groups.[449]

Common law principles

3. There are important principles that derive from our common law and are now embodied in human rights and equality legislation:

Under the common law, the state is required to treat people humanely. In addition, the courts recognise a common law principle of equality. The corollary of the principle of equality is the requirement not to discriminate either directly or indirectly without objective and reasonable justification.[450]

4. There is increasing evidence of the development of a common law principle of respect for human dignity, emerging from human rights and other jurisprudence.[451] We consider that all of these common law principles are relevant to this inquiry and to the treatment of adults with learning disabilities by our society.

Human Rights Act 1998

5. The Human Rights Act 1998 (HRA) came into force in October 2000. It incorporates the main rights and freedoms set out in the European Convention on Human Rights into UK law.

6. The HRA requires that all public authorities act in a manner which is compatible with the rights set out in the ECHR. If public authorities fail to meet this duty, people who are affected by the breach may ask the courts for a remedy. Public authorities include central Government, local authorities, NHS Trusts, and most providers of public services. Unfortunately, the Court has decided that certain private bodies which provide services to vulnerable people, including in residential care homes, are not public authorities because they do not perform "public functions". [452] More information about legal responsibilities of public authorities under the Human Rights Act can be found in our Report on older people in healthcare.[453]

Convention rights

7. All of the rights set out in the ECHR apply to people with learning disabilities. It is unlawful for public authorities to act in a manner which is incompatible with the ECHR rights set out in the Human Rights Act. We have set out below the articles that are particularly relevant to the issues raised in this inquiry.

RIGHT TO LIFE (ARTICLE 2)

8. In addition to prohibiting the intentional and unlawful taking of life, States are under a positive duty to take appropriate steps to protect life. Article 2 will also be engaged in circumstances where an individual's life is known (or ought to be known) to be at a real and immediate risk but the State fails to take reasonable steps to avoid that risk.[454]

9. The circumstances leading to the deaths of the six people with learning disabilities described in Mencap's report, Death by Indifference are likely to engage Article 2. During this inquiry we received evidence raising similar concerns that people with learning disabilities had died following the failure of health services to diagnose, or respond appropriately to, the person's health problems. (Article 2, Right to life).

FREEDOM FROM TORTURE OR INHUMAN OR DEGRADING TREATMENT OR PUNISHMENT (ARTICLE 3)

10. To fall within this Article the treatment given to a person must attain a 'minimum level of severity'. This will depend on the circumstances of the case, such as the duration of the treatment, its physical or mental effects and, in some cases, the sex, age and state of health of the victim.[455] Even if the treatment does not amount to a violation of Article 3, it may violate the right to autonomy and dignity under Article 8 (see below).[456]

11. Although the European Court of Human Rights usually requires that there has been an intention to humiliate and debase the person concerned, this is not always necessary.[457] Furthermore, Article 3 may give rise to positive obligations on States, requiring them:

[…]to take measures designed to ensure that individuals within their jurisdiction are not subjected to torture or inhuman or degrading treatment, including such ill-treatment administered by private individuals.[458]

12. In this inquiry we were given examples of the way in which people with learning disabilities are treated. The following examples could amount to a violation of Article 3 (in addition to violations of other ECHR articles):

• use of physical restraints (Article 8 ECHR is also likely to be engaged);
• blanket policy of dentist to remove all the teeth of patients with Down's syndrome
• failure to protect from physical assaults by co-resident of home (Article 8 is also likely to be engaged).

RIGHT TO LIBERTY (ARTICLE 5)

13. This right aims to protect individuals from arbitrary detention. Individuals can only be detained in the limited circumstances specifically set out in the article, for example following a lawful conviction for a criminal offence, or on the basis of the person's 'unsound mind'.[459]

14. A recent case demonstrates the relevance of Article 5 to the care and treatment of people with learning disabilities. In October 2005 the European Court of Human Rights held that there were insufficient safeguards for people who lacked capacity to agree to their informal admission to psychiatric hospitals. The Court found that the applicant, who lacked capacity to agree to his admission to hospital, had been deprived of his liberty contrary to Article 5(1) ECHR because his admission was not 'prescribed by law'. It was also contrary to Article 5(4) because he was unable 'to take proceedings by which lawfulness of his detention shall be decided speedily by a court'.[460] As a result of this decision, the Mental Capacity Act 2005 has been amended to include procedures to authorise the deprivation of liberty of individuals who lack capacity to decide whether or not they should be resident in a hospital or care home.[461]

RIGHT TO A FAIR HEARING (ARTICLE 6)

15. This Article relates to both civil and criminal proceedings, requiring that individuals have access to a fair and public hearing within a reasonable period of time before an independent and impartial tribunal or court. During the course of this inquiry numerous concerns have been raised, that children of people with learning disabilities are more likely to be removed from their parents' care than people without learning disabilities. We were also told that there is a lack of independent advice and legal representation in child care proceedings. This is an example of an issue which may raise questions about compliance with Article 6.

RIGHT TO RESPECT FOR PRIVATE AND FAMILY LIFE, HOME AND CORRESPONDENCE (ARTICLE 8)

16. This covers a wide range of areas affecting individuals' daily lives, such as parents' access to their children, compulsory treatment and medical examinations. Any interference with this right must be justified under one of the grounds set out in Article 8(2) such as public safety, the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.' Thus while there may be circumstances in which the intervention is justified, those involved in this decision would need to ensure that there were lawful grounds for the interference and it was proportionate to the risk identified.

17. There may also be circumstances in which the state is under a positive obligation to ensure respect for private and family life, for example, the right to respect for private and family life may gives rise to a positive obligation to take steps to ensure that the individual can lead as normal a private or family life as possible.

18. An example of how these positive obligations may affect people with complex needs and profound learning disabilities can be found in a case concerning the way in which two severely disabled sisters were cared for by local authority carers. The Court found that Article 8 required protection of the sisters' dignity, and that this would require positive steps on the part of the State to enable the sisters to be lifted manually.[462]

19. In this inquiry we have heard of a range of ways in which people with learning disabilities' right to private and family life under Article 8 may be infringed. For example:

• being patronised, harassed and bullied (Articles 8 and 14 (right to non-discrimination in the exercise of ECHR rights);
• restrictions imposed by family or staff on developing personal relationships (Article 8);
• being given no choice about where to live (Article 8, Right to private and family life);
• personal correspondence is opened and read by staff (Article 8);
• contact with family is severed due to out of area placement (Article 8);
• treatment is given without consent being sought first (Article 8).

PROHIBITION ON DISCRIMINATION (ARTICLE 14)

20. The rights protected by the ECHR must be guaranteed without discrimination. This right is violated when States treat differently persons in an analogous situations without providing an objective and reasonable justification. It also applies where States fail to treat people differently when their circumstances require special, or different, treatment:

The right not to be discriminated against in the enjoyment of rights guaranteed under the Convention is also violated when States without an objective and reasonable justification fail to treat differently persons whose situations are significantly different.[463]

21. For example, we were told of incidents in which the provision of health care was denied because the person had a learning disability. Such cases are likely to engage Article 8 together with Article 14. There may also be circumstances in which such refusal to provide healthcare engages Article 2 (the right to life) and Article 3 (freedom from inhuman and degrading treatment).

Disability Discrimination Act 1995 (as amended)

22. An important factor in considering the opportunities of adults with learning disabilities to access public services and to participate in the community without discrimination is the scope and application of the duties set out under the Disability Discrimination Act 1995 (as amended). This Act makes it unlawful to discriminate against a disabled person in a range of areas, including employment and the provision of goods and services. The Act places employers and providers of goods and services under a duty to make "reasonable adjustments" to their usual practices in order to avoid discriminating against people with disabilities, including learning disabilities. The Code of Practice on Rights of Access (2006) describes the imposition of this duty on service providers as "a cornerstone" of the Disability Discrimination Act. The Code explains:

It requires service providers to take positive steps to make their services accessible to disabled people. This goes beyond simply avoiding treating disabled people less favourably for a disability related reason.[464]

23. The Code explains that service providers must take a positive approach to the duty:

The policy of the Act is not a minimalist policy of simply ensuring that some access is available to disabled people; it is, so far as is reasonably practicable, to approximate the access enjoyed by disabled people to that enjoyed by the rest of the public. Accordingly, the purpose of the duty to make reasonable adjustments is to provide access to a service as close as it is reasonably possible to get to the standard normally offered to the public at large.[465]

24. The Disability Discrimination Act 2005, which amends the earlier Act, introduces a general duty on public authorities to promote disability equality. We refer to this duty as the 'Disability Equality Duty'. The Disability Equality Duty requires all public authorities, when carrying out their functions, to have 'due regard'[466] to the need to:

• eliminate unlawful discrimination against disabled people;
• eliminate disability-related harassment of disabled people;
• improve equality of opportunity of disabled people between disabled people and others;
• take steps to take account of disabled persons' disabilities even where that involves treating disabled people more favourably than other persons;
• promote positive attitudes towards disabled people;
• encourage participation by disabled people in public life.

25. The Disability Discrimination Act 2005 also places a duty on some public authorities, including NHS bodies and local authorities, to publish a 'Disability Equality Scheme', in which the authority sets out how it intends to fulfil its Disability Equality Duty. Public authorities must involve disabled people in preparing these schemes. These new duties therefore introduce significant changes to the purpose and scope of the disability discrimination legislation:

The new legislation will mark a shift from the reactive duties of DDA 1995 towards a positive duty to actively promote equality of opportunity for disabled people. The new Act is based on the belief that the disadvantage and social exclusion which is often experienced by disabled people is a consequence of environmental barriers. These can take the form of inaccessible buildings, but are also found in employment practices or services which do not take the particular circumstances of disabled people into account.[467]

DISABILITY EQUALITY DUTY AND THE PROMOTION OF EQUALITY OF OPPORTUNITY

26. The aim of the disability equality duty is to ensure that consideration of the needs of disabled people becomes an integral part of the policy-making or decision making process. The overarching goal is to achieve equality of opportunity:

The objective is that disabled people should have full opportunities and choices to improve the quality of their lives, and be respected and included as equal members of society.[468]

27. Public authorities are expected to take a proactive approach and to tackle the consequences of decisions, which in the past failed to give due regard to disability equality. The Disability Discrimination Act 1995 (as amended) recognises that to achieve equality of opportunity requires more than treating disabled people the same as everyone else, and that it is sometimes necessary to take positive steps to overcome the barriers faced by disabled people, by making reasonable adjustments.[469]

The Mental Capacity Act 2005

28. The Mental Capacity Act 2005, which came into force in October 2007, should also have a significant impact on many adults with learning disabilities. This Act provides a legal framework for acting and making decisions on behalf of individuals (aged 16 of over) who are unable to make such decisions for themselves. It covers a wide range of decisions, both personal (health and welfare) and relating to finance and property. Individuals' capacity must be assessed in relation to their capacity to make a particular decision at the time it needs to be made.

29. Significantly for people with learning disabilities, who are often assumed to lack capacity, the Mental Capacity Act's starting point is the presumption that everyone has legal capacity to take their own decisions:

It should be assumed that an adult (aged 16 or over) has full legal capacity to make decisions for themselves (the right to autonomy) unless it can be shown that they lack capacity to make a decision for themselves at the time that the decision needs to be made. [470]

30. In addition to the presumption of capacity, the Mental Capacity Act 2005 requires that a person is not to be treated as unable to make a decision, unless all practical steps to help the person make the decision have been taken. Where the person is judged to lack capacity to make the particular decision, the decision made on that person's behalf must be made in that person's best interests. Before an act or decision is taken on behalf of a person who lacks capacity, consideration must be given as to whether the same purpose can be achieved as effectively, in a manner that is less restrictive of the person's rights and freedom of action.[471]

31. The Mental Capacity Act 2005 creates a new specific independent advocacy service, referred to as the Independent Mental Capacity Advocate (IMCA) service. NHS bodies and local authorities must make sure that IMCAs are available to represent and support those people who lack capacity to make important decisions about serious medical treatment and changes of accommodation and do not have relatives or friends who would be appropriate to consult about those decisions. IMCAs may also be involved in decisions concerning care reviews and adult protection cases.[472]

UN Convention on the Rights of Persons with Disabilities

32. The UN Convention on the Rights of Persons with Disabilities[473] builds on existing human rights treaties including the International Covenant on Civil and Political Rights and the International Covenant on Economic Social and Cultural Rights. Its purpose is to:

promote, protect and ensure the full enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

33. Article 1 sets out the general principles of the Convention which include: 'non-discrimination', 'equality of opportunity', 'respect for difference and acceptance of persons with disabilities as part of human diversity and humanity' and 'full and effective participation of persons'. The first principle is that there shall be:

Respect for the inherent dignity, individual autonomy, including the freedom to make one's own choices, and independence of persons.

33. The UN Disability Rights Convention covers a mixture of civil and political and economic, social and cultural rights. These include equality and non-discrimination (Article 5), the right to life (Article 10), respect for privacy (Article 22), respect for home and the family (Article 23), the right to education (Article 24) and the right to the enjoyment of the highest attainable standard of health (Article 25). Article 19 provides for the right of 'living independently and being included in the community'.

35. States are expected to be proactive in ensuring respect for the rights set out in the UN Disability Rights Convention. For example, Article 4 requires States to take steps to '…ensure and promote the full realization of all human rights and fundamental freedoms' of disabled people 'without discrimination of any kind on the basis of disability.' A wide range of actions is listed. These include adopting legislative and other measures for the implementation of the rights under the UN Disability Rights Convention and modifying existing laws, regulations and practices that constitute disability discrimination. When undertaking such work, governments will be required to 'consult closely with and actively involve' disabled people. Governments will also be required to promote training on the UN Disability Rights Convention for staff and professionals who work with disabled people.

36. To date, 123 States have signed this treaty (including the UK) and 13 States have ratified this Convention. It is anticipated that in the next year or so it will come into force once the requisite number ratifications has been achieved (20 States). Anne McGuire, MP, Minister for Disabled People, informed us that the UK Government intends to ratify the Disability Convention by the end of 2008, if not before.

37. An Optional Protocol to the UN Disability Rights Convention provides for individuals to submit complaints about alleged violations of their rights under Convention to the Committee on the Rights of Persons with Disabilities.

38. Although ratification of the UN Disability Rights Convention will not incorporate it into domestic law, this Convention has the potential to be highly influential. For example national courts and the European Court of Human Rights regularly refer to international human rights treaties to assist in the interpretation of the ECHR and may therefore use the UN Disability Rights Convention for this purpose in relation to disability issues.

Themes arising from human rights standards and legislation

39. The following themes emerge from the human rights standards and legislation discussed above and are relevant to people with learning disabilities.

POSITIVE OBLIGATIONS TO PROMOTE HUMAN RIGHTS AND EQUALITY

40. Human rights standards are not just about requiring states to refrain from interfering with individuals' human rights or ensuring that where rights have been infringed, appropriate legal redress is available. In certain circumstances States are also required to take action in order to ensure that individuals' rights are protected. This is of crucial importance because during this inquiry we have been given many examples of how people with learning disabilities are excluded from society (these barriers are discussed in Chapter 8).

41. Both the ECHR and the Disability Discrimination Act 1995 (as amended) require that public authorities be proactive in certain cases if they are to comply with their statutory duties. For example, in relation to the Human Rights Act, Articles 2, 3, 5 and 8 of the Convention can give rise to obligations on States 'to take appropriate steps to provide protection against an interference with those rights either by State agents or by private parties.'[474] This positive obligation was considered by the High Court in a case concerning two sisters with profound physical and learning disabilities. The court commented that Article 8 encompasses:

[…] the positive obligation of the State to take appropriate measures designed to ensure to the greatest extent feasible that a disabled person is not "so circumscribed and so isolated so to be deprived of the possibility of developing his personality"[475].

42. In the case of the Disability Discrimination Act 1995 (as amended), the Disability Equality Duty specifically allows a public authority to treat disable people more favourably in order to achieve equality of opportunity. The Disability Equality Duty Code provides the following example:

An authority is involving disabled people in identifying the main barriers which they experience in relation to its functions, but has been unable to engage many people with learning disabilities. Following discussions with a representative organisation of people with learning disabilities, it becomes apparent that some people with learning disabilities are unable to become involved without the support of advocates. The authority provides funding for advocates to be employed to support people with learning disabilities at an event which the authority holds as part of its involvement processes, as well as ensuring that the process is accessible by, for example, providing Easy Read documentation.[476]

EQUALITY AND HUMAN RIGHTS - EQUALITY OF OPPORTUNITY

43. Equality of opportunity is one of the UN Disability Rights Convention's key principles. It is also reflected in UK disability discrimination legislation through, for example, the Disability Equality Duty.

PROMOTING PARTICIPATION

44. Participation is a core theme of the UN Disability Rights Convention. For example:

• one of its general principles is 'Full and effective participation and inclusion in society' (Article 3 (c));
• Article 19 provides for 'Living independently and being included in the community';
• Article 26 requires states to take effective measures to enable disabled people to 'attain and maintain maximum independence…and full inclusion and participation in all aspects of life;
• Article 29 provides for 'Participation in political and public life'. This includes ensuring that 'voting procedures, facilities and materials are appropriate, accessible and easy to understand and use'.

Although no previous case has established as such any right to self-determination as being contained in Article 8 of the Convention, the Court considers that the notion of personal autonomy is an important principle underlying the interpretation of its guarantees.[477]

46. Article 26 of the European Union's Charter of Fundamental Rights provides for the 'integration of persons with disabilities'. It states:

The Union recognises and respects the right of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community.

47. Although this Charter is not legally binding it has been referred to by the courts when considering the scope of Article 8 ECHR.[478]

CHALLENGING NEGATIVE ASSUMPTIONS, STIGMA AND DISCRIMINATION

48. Article 8 of the Disability Rights Convention provides for awareness raising. It requires states to 'adopt immediate, effective and appropriate measures' such as promoting awareness of the capabilities and contributions of disabled people, and to combat stereotypes prejudices and harmful practices. Article 16 requires states to take measures to protect disabled people 'both within and outside the home from all forms of exploitation, violence and abuse'.

49. The requirement on States to take positive measures to protect the rights of individuals that in certain circumstances arise under Articles 3 (freedom from torture, inhuman or degrading treatment or punishment) 8 (right to private and family life) and Article 14 (freedom from discrimination in the exercise of ECHR rights) are also relevant here.[479]

449   Human Rights in Healthcare - A Framework for Local Action, Section 0.1. Back

450   Eighteenth Report of Session 2006-07, The Human Rights of Older People in Healthcare, HL Paper 156-I, HC 378-I, Annex, Page 80, para 2. Back

451   Ibid, paras 27 - 33. Back

452   YL v Birmingham City Council [2007] 3 WLR 112. Back

453   Annex, paras 3 - 19. Back

454   Keenan v United Kingdom [2001] 3 EHRR 913. Back

455   Selmouni v France [1998] EHRLR 510, paragraph 100.  Back

456   Wainwright v the UK [2006] ECHR 807 Back

457   Price v UK [2002] 34 EHRR 53 Back

458   Z and others v UK (2002) 34 EHRR Back

459   Winterwerp v the Netherlands [1979] 2 EHRR 387. Back

460   HL v UK [2004] 40 EHRR 761. Back

461   See Section 50 and Schedules 7 - 9, Mental Health Act 2007. Back

462   A and B (X and Y) v East Sussex CC [2002] EWHC 2771 (Admin). Back

463   Thlimminenos v Greece [2000], 31 E.H.R.R. 411. Back

464   para 6.3. Back

465   para 6.4. Back

466   See paragraphs 2.34-2.44 The Duty to Promote Disability Equality: Statutory Code of Practice for a discussion on the meaning of 'due regard'. Paragraph 2.34 states: 'In all their decisions and functions authorities should give due weight to the need to promote disability equality in proportion to its relevance. This requires more than simply giving consideration to disability equality.'  Back

467   Creating a Disability Equality Scheme: A Practical Guide for the NHS, Department of Health, October 2006 www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4139668.pdf. Back

468   For further information see the Mental Capacity Act 2005, Code of Practice, February 2007, available at: www.justice.gov.uk/whatwedo/mentalcapacity.htm. Guides on the MCA are also available at: www.dca.gov.uk/legal-policy/mental-capacity/index.htm. Back

469   Creating a Disability Equality Scheme: A Practical Guide for the NHS, Department of Health, October 2006 www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4139668.pdf. Back

470   Mental Capacity Act, Code of Practice 1.2. Back

471   Section 1(6) Mental Capacity Act 2005. Back

472   For further information see Chapter 10 Mental Capacity Act 2005 Code of Practice and 'Making decisions: The Independent Mental Capacity (IMCA) service', www.dca.gov.uk/legal-policy/mental-capacity/mibooklets/booklet06.pdf. Back

473   The Convention was adopted on 6 December 2007. UN General Assembly, Sixty-First Session A/61/611. Back

474   Storck v Germany 2005. Back

475   A and B (X and Y) v East Sussex CC [2002] EWHC 2771 (Admin), paragraph 99. See also Price v the United Kingdom (2001) 34 EHHR 1285 and Botta v Italy (1998) 26 EHHR 241. Back

476   The Duty to Promote Disability Equality: Statutory Code of Practice, para 2.16. Back

477   Pretty v the United Kingdom [2002] 35 EHRR 1. Back

478   See for example, R (on the application of A and B) v East Sussex CC [2003] 6 CCLR 194. Back

479   See the discussion on positive obligations to promote human rights and equality above.  Back