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Joint Committee On Human Rights Seventh Report

CONCLUSIONS AND RECOMMENDATIONS

Adults with learning disabilities: the key issues

1.	We received evidence from across the UK, but most was from organisations and individuals in England. Consequently, this Report will focus largely on the policy framework in Valuing People. However, the human rights standards discussed in this Report are universal. We consider that most of the conclusions that can be drawn from the evidence are equally relevant to all four countries of the UK. Equally, we hope that our recommendations and conclusions will inform the development of policy and practice by each of the devolved administrations, as well as central Government. (Paragraph 31)

2.	In the light of the evidence which we received on the gap between the aims of Valuing People and the experience of adults with learning disabilities, which we consider below in Chapter 4, we are concerned that in Valuing People Now there appear to be few measurable targets for action nor precise proposals for monitoring progress on their achievement. (Paragraph 38)

3.	We are pleased to note that the Government is committed to "fully consider and respond to the conclusions" of our Report in the course of formulating their priorities for 2008 - 2011. We expect the Government to give the recommendations and conclusions of our Report serious consideration during preparation of the final version of Valuing People Now and in setting its priorities for action for the next three years. We consider that Valuing People Now presents a valuable opportunity for the Department of Health to take a positive approach towards the promotion of the understanding and protection of the human rights of adults with learning disabilities. We recommend that, when redrafted after consultation, Valuing People Now should explicitly promote a "human rights based approach" to public authorities' duties under the Human Rights Act; and should provide practical guidance for public authorities on the effective implementation of those duties. (Paragraph 40)

Why do human rights matter?

4.	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, [the] evidence received 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. (Paragraph 44)

5.	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. (Paragraph 53) 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). (Paragraph 53)

6.	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. (Paragraph 54)

7.	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. (Paragraph 56)

8.	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. (Paragraph 60) 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. (Paragraph 60)

9.	We urge the Government to ensure that any amendment to existing positive equality duties should strengthen rather than undermine their effectiveness. (Paragraph 61)

10.	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. (Paragraph 66)

11.	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. (Paragraph 69)

12.	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. (Paragraph 70)

13.	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. (Paragraph 77)

Living with a learning disability

14.	We recommend that the Department of Health revisit this issue [of how can support adults with learning disabilities to form relationships] in their redrafted Valuing People Now, in light of the evidence we have received. (Paragraph 88)

15.	We are concerned that the experiences communicated to us by adults with learning disabilities, their families and supporters appear to reflect the findings of the last National Survey, that adults with learning disabilities are more likely than other people to suffer from social exclusion, poverty and isolation. (Paragraph 98)

16.	We are concerned by the evidence that the framework for improving the lives of adults with learning disabilities does not appear to have had much impact in Government departments other than the Department of Health or the wider public sector; and that the impact of Valuing People on the experiences of adults with learning disabilities in their dealings with local authorities and individual service providers has been so patchy. (Paragraph 104)

17.	We were dismayed to hear the Minister for Care Services describe the National Director for Learning Disabilities as a "lone-ranger" on mainstreaming learning disabilities, rights and policy even within the Department of Health. We are extremely concerned that the Department, which has responsibility for cross-Government policy on learning disability, has failed to take seriously access to mainstream services for adults with learning disabilities, despite the existence of its statutory duties under the Disability Discrimination Act (as amended), the Disability Equality Duty and the Human Rights Act. (Paragraph 105)

18.	We welcome the Government's recognition that further work needs to be done to implement policy effectively, so as to support the rights of adults with learning disabilities as individuals. We also welcome the Minister's frank acknowledgement that more pressure needs to be placed on both central and local Government to deliver the policy of Valuing People. (Paragraph 108)

19.	We are concerned that the National Co-Director for Learning Disabilities and the Government have been searching for "levers" to implement a policy designed to ensure that adults with learning disabilities can live their lives in a way which promotes dignity and respect for their rights. We are particularly concerned that the National Co-Director did not appear to consider that public authorities' duties under the Human Rights Act would hold much sway. We reiterate our concern that the Department of Health and other Government departments should be proactive in promoting a positive approach to the Human Rights Act and to the Disability Equality Duty. We see the value of using these obligations to support or explain a particular policy choice as a 'lever' for implementation. However, this should not undermine the binding nature of these duties. (Paragraph 109)

20.	Difficult questions about allocation of resources may be involved when deciding whether to provide [funding for] support in specific cases. However, we consider these questions must be answered within the context of the legal obligations of local authorities and other public authorities, to respect the dignity and rights of service users. Local authorities must act in accordance with the Disability Equality Duty. (Paragraph 116)

21.	We are deeply concerned about the Government's negative response to our recommendations on the need for an express positive human rights duty for public authorities. The creation of a positive duty to respect human rights would help kick-start a change of attitude to the role of the Human Rights Act and to rights more generally. We doubt that, at least in the short term, oversight by the Equality and Human Rights Commission will encourage individual authorities to take a more proactive approach. On the other hand, witnesses to this inquiry, including the Minister for Care Services and the Minister for Disabled People, stressed their view that the potential impact of the Disability Equality Duty will be to change fundamentally the way that public authorities look at disability rights. We remain persuaded that the same is true of positive duties and the Human Rights Act. We reiterate our recommendation that the Government consider the introduction of an express positive duty on public authorities to promote respect for human rights, where the European Convention on Human Rights imposes a positive obligation on the State. (Paragraph 117)

22.	We strongly recommend that guidance to local councils should remind them that decisions about funding must be taken in a way which is compatible with the Disability Equality Duty and the Human Rights Act. We recommend that the Government rewrite its Guidance, including Fair Access to Care, to ensure it provides clear, straightforward and accessible examples of a human rights based approach, explains how social care funding decisions could lead to a breach of Convention rights and sets out how to comply proactively with the Disability Equality Duty. (Paragraph 121)

23.	We agree with our witnesses that one of the most distressing and worrying things about the investigation by the Healthcare Commission and CSCI into the treatment of people with learning disabilities in Cornwall was that "many of the staff did not believe and understand that what they were doing was wrong". This episode provides a most harrowing example of how a lack of awareness of the rights of people with learning disabilities can have a devastating effect, leading to situations where the right to be treated with respect for private life is ignored (Article 8 ECHR), and the rights to life and to be free from inhuman and degrading treatment are endangered (Articles 2 and 3 ECHR). (Paragraph 127)

24.	We agree that taking a human rights based approach to service provision could contribute to reversing negative attitudes, assumptions and stereotypes. We again stress that the Department of Health and the Office for Disability Issues should take a lead in creating a positive approach to the implementation of both the Human Rights Act 1998 and the Disability Equality Duty. However, "taking a human rights based approach" means more than using the appropriate language in policy documents or in statements to parliamentary committees. A proactive and practical approach to the implementation of individual rights for people with learning disabilities is needed to replace the existing culture, which has allowed society to "dehumanise" people with learning disabilities for centuries (Paragraph 133)

The treatment of adults with learning disabilities in health and residential care settings

25.	We are concerned, but not surprised, that the evidence we received shows that people with learning disabilities face similar problems in healthcare as older people, including: (Paragraph 136)

	Malnutrition and dehydration (Articles 2, 3 and 8 ECHR): Abusive and degrading treatment (Articles 2, 3 and 8 ECHR): Neglect or carelessness by health and social care services (Articles 2, 3 and 8 ECHR): Lack of privacy in health and social care settings (Article 8 ECHR): Lack of dignity in respect of personal care needs (Article 8 ECHR): Inappropriate use of restraint and/or medication (Article 8 ECHR): Problems with communication, particularly where patients have complex or profound learning disabilities (Article 8 ECHR): Negative, patronising and infantilising attitudes towards people with learning disabilities (Article 8 ECHR): Discriminatory treatment of adults with learning disabilities in access to mainstream services on grounds related to their disability (Articles 2, 3, 8 and 14 EHCR): Fear and difficulties in making complaints (Article 8 ECHR):

26.	We are extremely concerned that adults with learning disabilities undergo degrading experiences in health and residential care settings, which closely mirror the experiences of older people, on which we reported in August 2007. This implies that poor treatment and neglect of some of the most vulnerable people in our society, at the times when they are ill, in need of care and support, and most dependent on others to secure their most basic and fundamental rights, is endemic. Treatment involving abuse, neglect or carelessness of the kind uncovered by the Healthcare Commission and the Commission for Social Care Inspection in Cornwall and Sutton and Merton and by Mencap in Death by Indifference involves serious and severe human rights breaches. The task of securing the dignity and self-respect of this vulnerable group, which is central to the fulfilment of their human rights, is the responsibility of us all. The creation of a more positive human rights culture in service provision is vital to securing respect for adults with learning disability in need of health and social care services. (Paragraph 139)

27.	We made a series of recommendations on how to meet these concerns, in our Report on the Human Rights of Older People in Healthcare. In the light of the evidence that human rights problems extend beyond older people to a broad range of vulnerable people, we are extremely concerned that the Department of Health has offered few concrete commitments in its response to our previous recommendations on the implementation of a human rights based approach in the NHS (Paragraph 142)

28.	While we agree that the HRA is an important 'lever for change', care must be taken when using such descriptions to ensure that the legal obligations of the Human Rights Act are not undermined or misunderstood. (Paragraph 146)

29.	We welcome confirmation by the Department of Health that an independent evaluator has been appointed for its Human Rights in Healthcare project. It is disappointing that the report of the independent evaluator will not be available until Autumn 2008, which will be almost eight years after the HRA was introduced. Nonetheless, we recommend that the findings of the evaluation are published and disseminated widely within the Department of Health (including to Strategic Health Authorities, PCTs and providers of health and social services) and across Government. (Paragraph 147)

30.	Despite our view that the Human Rights in Healthcare project has potential, we are concerned that the Department of Health may see this exercise as a panacea that will lead to a positive culture of respect for dignity and human rights in service provision. In our view, this is only one of a range of initiatives that is needed in order to achieve this aim. We recommend that the Department of Health should use the sixtieth anniversary of the NHS to gain maximum exposure for its positive commitment to ensure that "Human rights are at the centre of the values of the health and social care system in this country". We consider that the adoption of a clear strategy on human rights in policy making by the Department of Health would set a positive example on the type of culture change which will be necessary to ensure that human rights are really at the heart of service delivery. (Paragraph 148)

31.	We welcome the positive commitment by the Healthcare Commission and CSCI to a human rights based approach to regulation and inspection. We also welcome the commitment of the Healthcare Commission and CSCI to work together to implement the conclusions of the recent Healthcare Commission Audit. We recommend that the Healthcare Commission and CSCI use this process to promote a positive approach to human rights and to the National Minimum Standards by hospitals and care homes. (Paragraph 150)

32.	The Health and Social Care Bill proposes to merge the regulatory and inspection systems for health and social care. The Care Quality Commission will assume the responsibilities currently held by the Healthcare Commission and CSCI in 2009. The Government proposes to merge the National Minimum Standards for health and social care, in registration requirements for registered providers of health and social care. It proposes that "human rights will be an important feature in the requirements, and we expect that they will also feature prominently in the regulator's criteria". We will consider these proposals as part of our scrutiny of the Health and Social Care Bill. (Paragraph 151)

33.	We welcome the early Government commitment in Valuing People Now to use the forthcoming NHS Operating Framework to require Strategic Health Authorities, PCTs and Trusts to deliver action plans to address the shortcomings identified by the Healthcare Commission's audit of learning disability services. (Paragraph 152)

34.	We welcome the frank acknowledgement by the Minister for Care Services that more needs to be done to ensure that adults with learning disabilities can access health services on an equal basis. We consider that practical steps must be taken to meet the recommendations of the DRC Formal Inquiry, not only by the Department of Health, but by other public bodies, including Strategic Health Authorities, PCTs, and local authorities. We are disappointed that progress on implementing the recommendations by the DRC Formal Inquiry has been slow. We welcome the commitment in Valuing People Now that work will continue until "nationally led responses to the DRC recommendations are in place". We urge the Department of Health to provide visible national leadership on the recommendations of the DRC Formal Inquiry, by taking steps to assess progress on each recommendation and to provide a detailed strategy and timetable for implementation. We support the recommendation of the DRC Formal Inquiry, that this should take place with much greater urgency. We recommend that the Equality and Human Rights Commission continue the work of the DRC on this issue and monitor progress closely over the next year, with a view to taking enforcement action if no progress is made. (Paragraph 156)

35.	We welcome the Department of Health announcement of the independent inquiry into the healthcare of people with learning disabilities. We also welcome the Government's commitment in Valuing People Now to consider seriously the recommendations of that inquiry on hospital and acute care. We welcome the Government's decision to highlight the duties of PCTs and general hospital trusts under the Disability Discrimination Act 1995 (as amended). This includes ensuring that their Disability Equality Schemes address those bodies ability and resources to meet the needs of people with learning disabilities. We regret that such a reminder is necessary. (Paragraph 157)

36.	In the light of the evidence gathered in this report, we call on the independent inquiry to adopt a human rights based approach to its work. We trust that it will endorse our call for a positive approach to the implementation of the statutory duties in the Human Rights Act and the Disability Discrimination Act 1995 (as amended). We will follow the progress of this inquiry with interest. (Paragraph 158)

Parenting and family life

37.	Social Services departments, courts and other public authorities working with parents with learning disabilities and their children are subject to the duty to act compatibly with the right to respect for family life, as guaranteed by Article 8 ECHR. The State has a positive, human rights based obligation to protect children from harm and to promote their development. However, any decision which impinges on the relationship between a parent with learning disabilities and his or her children could have very serious implications for the right to respect for their family life. In such circumstances, particular care must be taken to ensure that any restrictions on the development of ordinary family relationships must not only be in the best interests of the child, but must also be a necessary and proportionate response to the level of risk posed to the child or to its parents through continuing care at home. This assessment must take into account all of the relevant facts of an individual case, including the potential for additional support to meet the needs of the parents and the child. (Paragraph 163)

38.	The Minister for Care Services told us that "political correctness" should not prevent the removal of a child simply because a parent has learning disabilities. We agree that the assessment of whether a child should or should not remain with its parents is a complex one, requiring the careful consideration of many factors, including the best interests of the child and the rights of the child and its parents. We welcome the Minister's acknowledgement that unless justified and proportionate in all the circumstances, removal of a child could pose a significant risk to the rights of the child and its parents to respect for family life (Paragraph 164)

39.	We welcome the acknowledgement in the Government's Good Practice Guidance on Working with Parents with a Learning Disability that people with learning disabilities "have the right to be supported in their parenting role, just as their children have the right to live in a safe and supportive environment." We also welcome the acknowledgement that while children have the right to be safe from harm, children's needs are usually best met by support for their parents, to look after them. (Paragraph 169)

40.	We consider that if the recommendations for good practice in each of these areas were implemented effectively, this could significantly reduce the risk that parents and children would be separated, in breach of [their human rights]. (Paragraph 170)

41.	We welcome the recognition in Valuing People Now of the need to do more to improve support to parents with learning disabilities and their children. But we remain concerned that there are few concrete proposals for action or measurable targets regarding improving support to parents with learning disabilities and their children in that document. (Paragraph 177)

42.	Although we welcome the commitment of the Department of Health and the Department for Children, Schools and Families to the provision of information [to parents] in an accessible way, the Minister for Disabled People has accepted that it is likely that this commitment is no more than the Disability Discrimination Act already requires of those Departments. (Paragraph 178)

43.	While we recognise the potential of the Good Practice Guidance to improve support for parents with learning disabilities and their children, its effectiveness will depend entirely on positive dissemination and widespread implementation by local authority adults' and children's services, NHS Trusts and others. We are disappointed that the active dissemination of this important Guidance has so far relied principally upon the work of an independent parenting network, albeit supported by the Office of the National Director and his colleagues. We welcome the proposed involvement of the Care Services Improvement Partnership in further dissemination of the Guidance. We call upon the Government to set out clearly its proposals for ensuring that all local authority social services departments, including children's services and NHS Trusts are aware of the Good Practice Guidance and, importantly, that relevant professionals have training in its effective implementation. (Paragraph 179)

44.	We note that although Valuing People Now refers to the need for independent advocacy for parents with learning disabilities, it makes no proposals for action to ensure and increase the availability of such provision. We call upon the Government to take action on this issue in our discussion of advocacy in Chapter 8 below. (Paragraph 180)

45.	We consider that the proposals for monitoring progress in [this part of] Valuing People Now are particularly weak and lack precision. Public authorities have binding duties under the Disability Discrimination Act and the Human Rights Act to provide services without discrimination, to implement effectively their positive duties to disabled people, and to uphold the rights of parents with learning disabilities and their children to respect for their private life. In the light of these duties, we recommend that the Department of Health requires Learning Disability Partnership Boards to report annually on local commissioning of services to support parents with learning disabilities; and ensures that data is collected locally on the numbers of parents with learning disabilities supported by community teams for people with learning disabilities, and the numbers of their children taken into care, each year. (Paragraph 181)

Treatment of people with learning disabilities in the criminal justice system

46.	We recognise that not all abuse against adults with learning disability will amount to criminal behaviour. We recognise that in many circumstances, individuals who uncover abuse and criminal behaviour against vulnerable adults will rightly treat the protection of the victim as a priority. Where an individual has been seriously assaulted or where his or her life has been endangered, there is a clear obligation on the State, secured by that individual's ECHR rights, to conduct an effective investigation of the circumstances of the abuse. This includes an obligation to provide for the prosecution of the individual responsible, if appropriate. These important human rights obligations apply to everyone, including people with learning disabilities, unless there are objective reasons why an investigation or a prosecution should not go ahead. (Paragraph 195)

47.	We recommend that in the review of No Secrets and the proposed Valuing People Now guidance on crime and people with learning disabilities, the Government provides clear and accessible guidance on protecting people with learning disabilities (and other vulnerable adults) from abuse and ensuring that if a crime is suspected, effective steps are taken to inform and involve the police. We urge the Government to ensure that the relevant criminal justice agencies, including the Association of Chief Police Officers, the Crown Prosecution Service, the Home Office and organisations of and for people with learning disabilities, are closely involved in shaping this guidance. (Paragraph 196)

48.	We are disappointed that the Government has not agreed to create a duty to report abuse, as we previously recommended. We call on the Department of Health, as part of their review of the No Secrets Guidance, to reconsider our recommendation that there should be a duty on those working with vulnerable adults, at least within the NHS and in care homes to report suspected abuse. (Paragraph 197)

49.	People with learning disabilities, in common with the wider population, may have mixed experiences of dealing with the police, the courts and other parts of the criminal justice system. Every part of that system has an obligation to promote equal access to their services for disabled people, including those with learning disabilities, as part of their duties under the Disability Equality Duty. (Paragraph 200)

50.	We welcome the Government's commitment to meet the concerns of people with learning disabilities about hate crime, in Valuing People Now. We welcome the proposal that the Home Office should lead on the production of guidance to address hate crime and to increase the safety of people with learning disabilities in their communities. We recommend that people with learning disabilities, their carers and supporters, ACPO, the Police Federation and the CPS are closely involved in the production of this guidance. We consider that more accurate information would better inform the Government's policy on this issue. As part of the Government's commitment to address hate crime and the personal safety of adults with learning disabilities, we recommend that steps be taken to gather more consistent data on the level of crime against people with learning disabilities, either through a survey sponsored by the Home Office, or as part of the British Crime Survey. (Paragraph 204)

51.	We welcome the recent steps taken by ACPO and the CPS to improve their policy on crimes against victims with disabilities and hate crime, including against adults with learning disabilities. We were disappointed to hear that the CPS had not initially worked closely with the National Co-Director for Learning Disabilities. We recommend that, where any public sector agency is considering a policy which is relevant to disabled people, steps are taken to ensure that people with learning disabilities are specifically considered as part of the policy formulation, and if possible, involved in the preparation of that policy. We welcome the proposal by the CPS to amend their charging guidance to ensure that they are involved at an early stage in the investigation of crimes against people with a learning disability where hate crime is suspected. Whilst any decision on prosecution must be based upon the evidence available and should take full account of the rights of the defendant, we consider that this would be a positive development which could increase the confidence of adults with learning disability in the police and the criminal justice system, by ensuring that any element of hostility or prejudice towards them is properly investigated and considered as part of any prosecution. (Paragraph 209)

52.	We are concerned that the problems highlighted by this evidence could have potentially very serious implications for the rights of people with learning disabilities to a fair hearing, as protected by the common law and by Article 6 ECHR. Some of this evidence also suggests that there are serious failings in the criminal justice system, which give rise to the discriminatory treatment of people with learning disabilities. (Paragraph 212)

53.	The evidence which we have received on the treatment of people with learning disabilities in prison and their inability to secure equal access to parole, raises one of the most serious issues in our inquiry. We are deeply concerned that this evidence indicates that, because of a failure to provide for their needs, people with learning disabilities may serve longer custodial sentences than others convicted of comparable crimes. This clearly engages Article 5 ECHR (right to liberty) and Article 14 (enjoyment of ECHR rights without discrimination). It is also an area that falls within the Prison Services' responsibilities under the Disability Equality Duty. (Paragraph 215)

54.	We welcome the publication of the Government's consultation, Improving Health, Supporting Justice. We recommend that the Government ensures that people with learning disabilities are able to participate effectively in that consultation. We recommend that each of the relevant criminal justice agencies, including the police, the Crown Prosecution Service, the Court Service, the Prison Service and the Probation Service undertake an audit of their services for compliance with ECHR rights, the Disability Discrimination Act and, specifically, the Disability Equality Duty, in order to inform the Government's Improving Health, Supporting Justice, when it is finalised next year. (Paragraph 217)

Barriers to an 'ordinary life'

55.	Under the Disability Discrimination Act 1995 (as amended), the statutory obligation on providers of goods and services to the public to make reasonable adjustments to enable disabled people to use their services may, in some circumstances, require that information is made available to people with learning disabilities in an easy to understand, written, or other appropriate format. We consider that the provision of accessible information for people with learning disabilities should be standard practice for public bodies such as the Government departments, NHS bodies and local authorities, who are all subject to this duty to make reasonable adjustments, and are also subject to the duty to promote disability equality. (Paragraph 225)

56.	With the introduction of the Disability Discrimination Act (as amended) and the duty on providers of goods and services to make reasonable adjustments to meet the needs of people with learning disabilities, we believe that adults with learning disabilities should be able to obtain the information they need in formats they can understand. We consider that the statutory obligation to make reasonable adjustments includes ensuring that information is available in an easy to understand format. This duty is reinforced in relation to public authorities, by the Disability Equality Duty. We are deeply concerned that this does not reflect the experiences of our witnesses. (Paragraph 226)

57.	We are disappointed by the lack of specificity and at the absence of any reference to goals, targets or identifiable commitments to increase the provision of accessible information in the Action Summary relating to this section of Valuing People Now [on accessible information]. It is not clear how progress is to be made or measured in the absence of any specific commitments. We recommend that such commitments are included in the revised version of Valuing People Now to be produced later in 2008, following consultation. (Paragraph 231)

58.	We recommend that [the issue of accessible information] receive appropriate attention in the ODI's forthcoming Independent Living Review Strategy. (Paragraph 232)

59.	In addition, we call on the ODI to ensure that statutory authorities and others are fulfilling their duties under the Disability Discrimination Act and the Disability Equality Duty by making information available in formats that are accessible to people with learning disabilities. This can be through providing it themselves, by commissioning it from others, or requiring it as part of contractual agreements. The ODI should monitor and review progress as part of an overall strategy for the provision of accessible information. (Paragraph 233)

60.	We also call upon the Healthcare Commission and the Commission for Social Care Inspection to ensure that scrutiny of the availability of accessible information (including easy to understand information on what is abusive practice and what people can do about it) is routinely included in the course of their inspections of providers of health and social care. (Paragraph 234)

61.	Empowering people with learning disabilities to stand up for their human rights is important. Although, in some places in this report, we have described this group as vulnerable, we have been particularly impressed by the role played by self-advocacy groups and our individual witnesses with learning disabilities, in telling us how their rights could best be protected. We are aware that some people with learning disabilities will not be able to understand information about human rights by themselves, even if it is in an easy read, illustrated or audio format. They will need to have the information explained and have support to understand it (Paragraph 238)

62.	These concerns are indicative of a disappointing lack of central leadership on this issue. We were deeply disappointed that the Office for Disability Issues could not provide an accessible summary of the United Nations Convention on the Rights of Persons with Disabilities until more than a year after the Convention was agreed. We were equally concerned that the Easy Read guide to the Human Rights Act, prepared by the Ministry of Justice, was not available to be downloaded from the Ministry of Justice website for some time. We raised these concerns with the Minister for Human Rights and the Minister for Disabled People and both of these problems have now been resolved. (Paragraph 241)

63.	We welcome the recent publications from the Office for Disability Issues on improving information for disabled people, including the document aimed at public sector communicators and practitioners. These set out five principles for producing better information for disabled people: (Paragraph 242)

	Principle 1: ensure that disabled people are involved from the start. Principle 2: provide information through a range of channels and formats. Principle 3: ensure your information meets users' needs. Principle 4: clearly signpost other services. Principle 5: always define responsibility for information provision.

These principles should be followed both within and beyond Government.

64.	We were dismayed by the Minister's frank admission that not only is there no Government strategy on the provision of accessible information on rights, there is no wider cross-Government strategy on providing information in an accessible format. We accept that it can sometimes be difficult to provide information in this way quickly, consultation with relevant stakeholders will often be appropriate and necessary, and that, sometimes, the most appropriate format will not be the written word. Nevertheless, we expect central Government to provide a lead and to set a good example by ensuring that people with learning disabilities have equal access to information in appropriate formats, as required by the Disability Discrimination Act and the Disability Equality Duty. (Paragraph 244)

65.	We recommend that the Office for Disability Issues work with the Office of the National Director for Learning Disabilities at the Department of Health and the Cabinet Office to formulate and implement a cross-Government strategy for the provision and distribution of easy to understand, accessible information, by Government (and other) bodies, as a matter of urgency. We recommend that a specific strategy on accessible information about human rights and equality is formulated by the Office of Disability Issues, working with the Ministry of Justice. The Equality and Human Rights Commission should be closely involved in the development of these strategies and should monitor their implementation in practice. (Paragraph 245)

66.	We call upon the Government to review the availability of Independent Mental Capacity Advocate services. (Paragraph 255)

67.	We recommend that parents with learning disabilities should have access to independent advocacy when subject to safeguarding procedures, particularly before any court proceedings. We call upon the Government to review current provision of advocacy services for parents with learning disabilities, to ensure that such services are available in these situations. (Paragraph 258)

68.	We are aware that resources are limited, but are persuaded that for many people with learning disabilities access to independent advocacy may be the only realistic means of securing their human rights, not least if family carers are no longer around to advocate on their behalf (Paragraph 260)

69.	We consider that adults with learning disabilities, particularly those who are most vulnerable (including parents, adults with complex and profound learning disabilities and those involved in the criminal justice system), would benefit greatly from the assistance of independent advocates in order to secure their human rights on the same basis as the rest of society. (Paragraph 261)

70.	We welcome this commitment [Valuing People Now: on the national advocacy fund], but call upon the Government to review the availability of independent advocacy for people with learning disabilities whose needs fall outside the scope of the Independent Mental Capacity Advocate services provided under the Mental Capacity Act 2005, or the proposed reform of health and social care complaints procedures. We recommend that as part of their proposal to support advocacy to have an increasing impact, the Government ensures that independent advocates, including independent mental capacity advocates and others, have an understanding of human rights principles and the positive duties of public authorities and service providers towards adults with learning disabilities. (Paragraph 263)

71.	People with learning disabilities should be subject to the same test for capacity to vote as people without learning disabilities. However, assumptions that adults with learning disabilities lack capacity may prevent them from exercising their right to vote and to participate in the democratic process. (Paragraph 272)

72.	We recommend that the Electoral Commission and the Ministry of Justice, working with the Office of the National Director for Learning Disabilities and the Equality and Human Rights Commission, produce guidance for Presiding Officers on the test for capacity to vote and how to assess this. The Electoral Commission should work together with the Equality and Human Rights Commission to take steps to make voting more accessible for people with learning disabilities. As part of this process, we recommend that the Government consider the role of the proposed Care Quality Commission, and whether it should monitor how registered providers of care facilitate, or undermine, service users rights to vote. (Paragraph 273)

73.	We recommend that when Valuing People Now is revised, after consultation, local commissioners and service providers should pay greater attention to how they organise services, in order to maximize, rather than limit, people's opportunities for social relationships and inclusion in the community (Paragraph 282)

74.	We recommend that the final version of Valuing People Now consider the devastating impact which poor access to communication aids can have on the ability of some adults with learning disabilities to communicate with others, and thus participate in social relationships and the life of the community. (Paragraph 284)

75.	We recommend that the Department of Health gathers and publishes information on the nature and numbers of out of county placements, and on the significant impact such placements have on individuals with learning disabilities, to inform its work on the revised version of Valuing People Now. (Paragraph 288)

76.	In light of the significant role commissioners and service providers will play in the protection and promotion of the human rights of adults with learning disabilities, we were disappointed that the recently published Department of Health Good Practice Guidance for Commissioning Specialist Adult Learning Disability Health Services fails entirely to mention "human rights" or a "human rights based approach" or to provide any practical guidance to commissioners on how to use commissioning agreements to secure respect for the rights of adults with learning disabilities. (Paragraph 291)

77.	The Minister told us the Government intended to ensure that the new Care Quality Commission would be under a responsibility to regulate to the "standards that would be expected if the Human Rights Act were to apply to those providers". The Human Rights Minister recently told us that a statutory solution which will extend the full protection of the Human Rights Act to service users who receive support from a private sector provider will not happen until after the conclusion of a consultation on its forthcoming Green Paper on a Bill of Rights for Britain. We consider that this presents a significant retreat from the Government's earlier commitment to provide a solution for private care homes as soon as possible. We are concerned that this change of view will leave a significant gap in the protection of vulnerable people receiving support in the private sector, including adults with learning disabilities. We recommend that the Government legislate to ensure that all private providers of health and social care are considered public authorities for the purpose of the Human Rights Act and are subject to the duty to comply with Convention rights. (Paragraph 292)

Conclusions: Putting human rights principles into practice

78.	Although we were impressed by the passion for a human rights based approach expressed by the Minister for Care Services and the Minister for Disabled People, we are persuaded that real change for adults with learning disabilities will only happen if practical steps are taken to promote a more positive approach to the rights of adults with learning disabilities on the ground, in mainstream public services. (Paragraph 295)

79.	Public authorities should never be allowed to treat their duties towards adults with learning disabilities under the Human Rights Act 1998 and the Disability Discrimination Act (including their positive duties under the Disability Equality Duty) as optional. (Paragraph 296)

80.	We urge the Department of Health and the Office for Disability Issues to consider opportunities for joint-working to meet the aims of Valuing People and Valuing People Now. As part of this process, we recommend the amendment of Valuing People Now, to remind all public authorities, including Government Departments, local authorities and NHS Trusts, that the aim of the Government's policy is grounded both in the need to respect the human rights of adults with learning disabilities, and in the binding obligations of the Human Rights Act 1998 and the Disability Discrimination Act (as amended). We consider that this would send a strong message to mainstream services that implementation of this policy is not optional. (Paragraph 301)

81.	We consider that the Equality and Human Rights Commission has a crucial role to play in the creation of a broad culture of human rights. (Paragraph 303) We encourage the Equality and Human Rights Commission to ensure that it monitors the performance of the Government and other public bodies in relation to the treatment of adults with learning disabilities, and take steps, including through active involvement with their statutory Disability Committee or otherwise, to ensure that adults with learning disabilities play a central role in its work and that their views and voices are heard. (Paragraph 303)



© Parliamentary copyright 2008	Prepared 6 March 2008