44. In the rest of this Report, we consider the treatment of adults with learning disabilities, and the evidence we have received. We are disappointed that, at the start of the 21st century, almost ten years after the introduction of the Human Rights Act, and over a year since the introduction of the Disability Equality Duty, this evidence convinces us that we need to emphasise that adults with learning disabilities have the same human rights as everyone else; and that they are entitled to freedom, respect, equality, dignity and autonomy in their everyday lives. In an Annex to this Report, we outline the various human rights laws and standards which are relevant to our inquiry. In that Annex, we refer not only to the provisions of the Human Rights Act and to the common law, but also to the provisions of the Disability Discrimination Act (as amended), including the positive Disability Equality Duty and the UN Disability Rights Convention.

What does the Human Rights Act add?

45. We have consistently expressed our view that the Human Rights Act is important in the development of institutional and Government policies and practices, and in the improvement of public services.[67] For example, in our Report on the Human Rights of Older People in Healthcare, we said:

We see the purpose of the Human Rights Act, not as an end in itself, but as a tool that can and should be used in law, policy and practice to enable […] social justice goals to be achieved. [68]

46. We consider that the Human Rights Act provides 'a legal framework for service providers to abide by and empower service users to demand that they are treated with respect for their dignity'.[69] The Human Rights Act empowers users of public services who may be placed in situations where they are vulnerable to abuse. We consider that these conclusions apply with equal force to people with learning disabilities.

47. Joanna Perry, from Values into Action, put it well when she told us:

Sometimes for staff, in particular staff working with people with learning difficulties in institutional settings, especially in long-stay hospitals, sometimes in the institutional world common sense is not the law of the land, it is not what rules how people are treated. Sometimes staff need help to see how human rights obligations can help them problem-solve.[70]

48. She gave us the example of a man who liked to go out in his garden, but who also liked to make a lot of noise. The neighbours complained and the response of his care home staff was to keep him indoors:

We helped the staff use the framework of human rights, which puts everyone's rights on the same footing, to see how his rights were equal to the neighbour's rights … and to come to a compromise. The staff [went from] thinking "Oh, human rights. That's just another thing we are going to have to deal with", to seeing how it could be used to problem-solve some very difficult situations, and it can used from day-to-day stuff like that to life and death decisions.

49. The National Co-Director for Learning Disabilities told us that adopting a rights based approach to Valuing People was right. He explained:

I think it is the right approach, because getting people to understand that this is not something you do because you want to be nice to disabled people, but is actually their rights as equal citizens, and building that into working patterns, is the way forward.[71]

50. Witnesses told us human rights had a role to play, but that there were a number of barriers to a better deal for adults with learning disabilities.[72] These included failure by Government to secure the effective implementation of Valuing People, lack of funding, and negative attitudes (which we consider in Chapter 4, below).

51. We recognise that it may be particularly difficult to empower people with learning disabilities to speak up for their rights under the Human Rights Act. As Andrew Lee, Director, People First (Self-Advocacy) told us:

A lot of people do not know what their human rights are and, for example, asking about human rights and public services such as housing will not mean much.[73]

52. We consider that it is part of the role of Government to ensure that human rights principles and standards are accessible. Particular steps may need to be taken to ensure that adults with learning disabilities are assisted to understand human rights, including through the provision of accessible information and advocacy (which we consider below in Chapter 8). Values into Action told us that their "Rights into Action" project had worked with adults with learning disabilities and had:

helped them get the language together to talk to people who had control over their lives and to challenge these quite pervasive daily ways that people's rights were being interfered with. There are many examples of this. There should be a lot more and it is absolutely possible for people to understand the concepts and make them real.[74]

53. We recently made a number of recommendations to Government on "the transformative power of the Human Rights Act". In plain English, we told the Government and others what we thought they needed to do to make the Human Rights Act work for everyone. We have called upon the Government, the Equality and Human Rights Commission, other public bodies and voluntary organisations to champion publicly how a better understanding of human rights principles could improve health and social care services. Specifically, we recommended that the Equality and Human Rights Commission as part of their duty to "promote understanding of human rights" should ensure that this understanding is widely disseminated.[75] We consider that when fulfilling this duty, the Equality and Human Rights Commission has a responsibility to engage proactively with those who are most vulnerable to breaches of their human rights and those who are less likely to be able to understand what human rights mean for them, including adults with learning disabilities. We recommend that the Commission take steps to ensure that adults with learning disabilities are aware of their rights under the Human Rights Act and the Disability Discrimination Act (as amended).

54. However, despite the welcome establishment of the Equality and Human Rights Commission, we consider that Government retains a primary responsibility to ensure that we all understand the human rights framework within which they, and service providers, operate. We recommend that the Minister for Care Services, the Office for Disability Issues and the Ministry of Justice together develop a strategy on how to help vulnerable people, including adults with learning disabilities, understand what the statutory duties in the Human Rights Act and the Disability Equality Duty mean for them.

Disability, equality and human rights

The Government's aim of achieving disability equality and full participation in society for disabled people within a generation (by 2025) as described in the Life Chances report … is fully consistent with the [UN Disability Rights Convention] aim of protecting disabled people's human rights.[77]

56. We consider that the statutory duties under the Disability Discrimination Act (as amended), and specifically, the Disability Equality Duty, complement the HRA. Together they form a powerful means of effecting positive change. If both are understood and implemented properly they can underpin and promote the agenda set by the Government for improving the life chances of people with learning disabilities.

57. Unfortunately, a number of our witnesses confirmed that there is a low level of awareness of the implications of the Disability Equality Duty among people with learning disabilities, their carers and supporters and, more worryingly, on the part of service providers and public authorities. Ms Eve Rank, Disability Rights Commissioner, gave a helpful illustration:

Some local authorities do not know about the Disability Equality Duty. For example, last week I had alterations done to my bathroom, because my husband is disabled, and I am disabled a little bit for the next six weeks. I asked about the equality duty and asked if he was involved with people with learning disabilities and he did not know what it was. That is the Adaptations Manager. I also asked somebody from Bedfordshire social services this morning and they did not know.[78]

58. She added:

However, it has only just recently come into force, since December, so it is early days to tell whether it is working or not but it is great fun asking the people who I know if they know about it. I think it is really important that they do involve people with learning difficulties in their equality schemes. The one problem they might have is that they do not know how to do it, because it is the first time they have got to involve people, so they need training, and the only people to give this training to get people involved are the people with learning difficulties themselves, because they are the experts.[79]

59. We asked the Minister for Disabled People to explain why, given that the Disability Equality Duty is so important for adults with learning disabilities, there was so little awareness of the requirements of the duty among public authorities. She told us that there was a distinction between awareness and compliance with the duty at a "high level within public authorities", and formal compliance by, for example, "the publication of a disability equality scheme, etc", and "a bigger issue" of cultural change. She explained that although the purpose of the Disability Equality Duty was cultural change, radical change could not happen overnight.[80]

60. We are concerned that, one year after the introduction of the Disability Equality Duty, the evidence we have received suggests a clear distinction between formal compliance by public authorities and a failure to take a positive approach to the duty on the ground. Despite the Minister's reassurance that the Government did not consider compliance with the Disability Equality Duty should be a "tick-box" exercise, we are concerned that without proactive work on the part of the Office for Disability Issues and the Equality and Human Rights Commission, this is precisely what will happen. We welcome the commitment of the Minister for Disabled People to work together with the Equality and Human Rights Commission to ensure that the Disability Equality Duty "is not left on a pile somewhere".[81] However, when we asked for the Government's plans to improve awareness and ensure positive compliance, we were disappointed to see that the plan includes Ministerial speeches and a "new wave" of other unspecified "activities". We recommend that the Office for Disability Issues work closely with the Equality and Human Rights Commission to champion publicly a broad, positive approach to the Disability Equality Duty. This should involve a strategy to ensure that other public bodies, and their staff, understand how the proactive implementation of the duty can improve service provision for adults with learning disabilities and others.

61. Throughout this inquiry witnesses have highlighted the importance of the Disability Equality Duty and its huge potential to bring about positive change to the lives of people with learning disabilities. Witnesses expressed their concerns that the proposals in the Government's Single Equality Bill consultation document concerning the public sector equality duties may weaken the existing disability equality duty.[82] We urge the Government to ensure that any amendment to existing positive equality duties should strengthen rather than undermine their effectiveness.

UN Convention on the Rights of Persons with Disabilities

The Convention is a powerful statement that disabled people are fully entitled to the same human rights and fundamental freedoms as others.[84]

64. Sonia Sceats from British Institute of Human Rights ("BIHR") told us that ratification of the UN Disability Rights Convention:

Will send an incredibly strong signal not only to people with learning disabilities but disabled people more generally and to our community about the importance we set on the rights that belong to disabled people. Many people have traditionally seen disabled people through the lens of charity and so forth and this Convention is sending a very strong signal that disabled people are rights holders. This is very important.[85]

65. Inclusion International, an international organisation which represents the interests of people with learning disabilities, told us:

For people with [learning disabilities] and their families, the challenge of this Convention will be to have State parties and other groups recognise that the Convention includes and must protect the rights of people who cannot speak for themselves….For people with [learning disabilities] and their families the Convention provides an opportunity to develop an aspirational instrument with a vision for the future and can transform the way in which our societies are structures and organised in order to be inclusive.[86]

66. We agree that the UN Disability Rights Convention presents a valuable opportunity to confirm that disabled people, including adults with learning disabilities, are entitled to full respect for their human rights.

67. The United Kingdom has signed the Convention, but has not ratified it. Having stressed the importance of the UN Disability Rights Convention to us, Anne McGuire MP, Minister for Disabled People commented:

I am under no illusion that making a reality of the new Convention in this way represents an enormous challenge but it is a challenge that we are committed to meeting. We need to build services around disabled people which support them in a way that they want to be supported and not expect them to live in a box that other people have created for them.[87]

68. In her evidence, the Minister told us that it was the Government's intention to ratify the Convention by the end of 2008.[88]

69. We welcome the Government's commitment to ratify the UN Disability Rights Convention. However, we are mystified by the reason given for the Government's delay in ratifying this treaty. We wrote to the Minister earlier this year calling on the Government to ratify the Convention and asking for a timetable for ratification.[89] The Minister told us that this was the first human rights treaty that the Government had considered under "which organisations like the European Community share competence with Member States". She explained that "there is a need to coordinate action with the Community…and with other member states … So the timetable is not within our control".[90] When we asked the Minister to explain whether there were barriers to ratification, such as to cause delay till the end of 2008, she told us: "we also have to ensure that we are in fact compliant and can meet our responsibilities". She said told us that she couldn't tell us about any specific barriers to ratification, but that she was working on plans for ratification with other departments.[91]

70. We recommend that either the Government ratifies the UN Disability Rights Convention and its Optional Protocol without further delay, or provides clear and unambiguous details of any specific impediments to immediate ratification. We will continue to monitor progress towards ratification. We will be deeply concerned if the Government does not meet the goal that the Minister for Disabled People has set, namely, ratification before the end of 2008.

Independent living and human rights

71. Earlier in this chapter we referred to 'independent living', adopting the Disability Rights Commission's definition. Many of our witnesses told us that a right to "independent living" was important for people with learning disabilities. Some expressed their support for a Private Member's Bill, the Independent Living Bill, introduced by Lord Ashley of Stoke.[92] For example, both the Disability Rights Commission and Andrew Lee, Director, People First (Self-Advocacy), told us how important they thought this Bill was, as it secured the right of people with learning disabilities to support for independent living.[93]

72. One of our witnesses, Rescare, expressed some concern about the term, 'independent living', emphasising that not everyone can live independently. Rescare told us that the extent of the dependency of some people with learning disabilities is often overlooked in considering supported or independent living.[94] When we refer to independent living, we refer to the Disability Rights Commission interpretation, which promotes choice and autonomy for people with disabilities in their daily lives. This may mean different things for different people. It should not be confused with situations where people with learning disabilities have been moved to supported living in the community without adequate support. One of the first things that we learned in this inquiry was that a "one size fits all approach" was not appropriate.

73. We consider that the principles of independent living and promoting the participation of disabled people in community life are core themes of the UN Disability Rights Convention. It has a clear basis in other human rights standards and principles, such as freedom, equality and autonomy. Article 19 (Living independently and being included in the community) of the UN Disability Rights Convention provides that States:

[…] recognize the equal right of all persons with disabilities to live in the community, with choices equal to others and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.

74. Sonya Sceats, Policy Officer at BIHR put it well when she said that the concept of independent living 'is something that you can find resonating in the text of the UN Convention'.[95]

75. The Minister for Disabled People told us:

"All of our policies at the moment are driving towards independent living."

76. The Minister for Care Services added:

"We want the same missionary zeal amongst as many people as possible in terms of the right to independent living, and that in a sense is our next challenge."[96]

77. We welcome the commitment expressed by the Minister for Care Services and the Minister for Disabled People, to the principle of independent living. We await the results of the Government's Independent Living Review, with interest. We recommend that the Government consider the outcomes of that review, and the need for any further policy or legislative change, as part of their commitment to review the UK's domestic compliance with the UN Disability Rights Convention.

66   Q 1. Back

67   See for example, Sixth Report of Session 2002-03, The Case for a Human Rights Commission, HL 67-1, HC 489-I, para 9. Back

68   Eighteenth Report of Session 2006-07, The Human Rights of Older People in Healthcare, HL Paper 156-I, HC 378-I, para 69. Back

69   Ibid, para 93. Back

70   Q 69. Back

71   Q 119. Back

72   Qs 8-9. Back

73   Q 2. See also Ev 233. Back

74   Q 49. Back

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

76   Q 135. Back

77   Ev 388, para 11. Back

78   Q 27. Back

79   Ibid. Back

80   Q 188.  Back

81   Ibid. Back

82   Department for Communities and Local Government, Discrimination Law Review A Framework for Fairness: Proposals for a Single Equality Bill for Great Britain, June 2007. See Annex 3, para 2; Ev 333. Back

83   Annex 2, para 11. Back

84   Q 155. Back

85   Q 73. Back

86   Ev 190-191. The quote refers to "intellectual disabilities", a term used by some international organisations to refer to learning disabilities. Back

87   Q 155. Back

88   Ibid. Back

89   Ev 385. Back

90   Ev 386. Back

91   Q 190. Back

92   See for example Ev 85, Ev 289. Back

93   Q 1 (Andrew Lee), Q 11 (Andrew Lee), Q42 (Mr Shrimpton) Back

94   Annex 3, para 17-18 (Richard Jackson, Rescare); Ev 55. Back

95   Q 74. Back

96   Q 177. Back