Implementation of the Right of Disabled People to Independent Living

Implementation of the Right of Disabled People to Independent Living - Human Rights Joint Committee Contents

3 Progress so far

38. Significant progress has been made in the UK towards protecting and promoting disability rights and the right to independent living in particular. This allowed the UK to play a leading role in negotiating the UNCRPD and speedily to ratify it in 2009. This chapter provides a brief overview of some of the more significant areas of progress in recent years.

Legislation and policies in recent years

The Disability Discrimination Act 1995 made it unlawful to discriminate against disabled people in connection with employment, the provision of goods, services or facilities or the disposal or management of premises. It introduced a duty for service providers to make "reasonable adjustments" to allow disabled people to take advantage of their services. This might include provision of equivalent services. The DDA 1995 was subsequently amended by secondary legislation such as the Disability Discrimination Act 1995 (Amendment) Regulations 2003 and by primary legislation such as the Special Educational Needs and Disability Act 2001 and the Disability Discrimination Act 2005. These amendments extended the scope of the Act. The 2005 Act also introduced a Disability Equality Duty which obliged public authorities to take a more proactive role in promoting the equality and inclusion of disabled people.

The Community Care (Direct Payments) Act 1996 enabled local authorities to provide direct payments to disabled people to allow them to commission their own services.

The Human Rights Act 1998 requires that all public authorities act in a manner which is compatible with the rights set out in the European Convention on Human Rights. 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.

Most recently, the Equality Act 2010 sought to streamline UK anti-discrimination legislation. For Great Britain (but not Northern Ireland) it repealed and replaced the DDA (as amended). The Act extended the protection of disabled people from discrimination, but also made changes to the specific duties of public authorities with respect to the involvement of disabled people in policy decisions.

The Welfare Reform Act 2009 introduced the Right to Control (see below), while the Health Act 2009 introduced personal health budgets, both of which would extend disabled people's choice and control over their supported services. These are both currently being piloted in some areas of the country.

39. The previous Government also took other non-legislative measures in the area of disability policy. These included the establishment in 2000 of the Disability Rights Commission (which was subsequently replaced by the Equality and Human Rights Commission) and the establishment of the Office for Disability Issues in 2005 to coordinate disability policy.

40. The previous Government's 2005 cross-departmental report, Improving the Life Chances of Disabled People, set a goal that by 2025 "disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society". In particular, it aimed to help "disabled people to achieve independent living by moving progressively to individual budgets for disabled people, drawing together the services to which they are entitled and giving them greater choice over the mix of support they receive in the form of cash and/or direct provision of services."[37] One of the recommendations of this report was the setting up of the Office for Disability Issues and the establishment of a body, Equality 2025, to advise the Government on how to achieve the aims of the report by 2025. Equality 2025 was created in 2006.

Independent Living Strategy

41. The Independent Living Strategy (ILS) was a cross-government project, coordinated by the Office for Disability Issues. It was published in 2008 and aimed to fill the gap "between national policy and people's real experiences"[38]. The Strategy included commitments to:

Promote a shared understanding of the principles and practice of independent living
Strengthen the evidence-basis to inform policy development; redeploy resources from professional assessment to user-led support; create a regional initiative to determine how to invest in independent living for older people in residential care, or at risk of moving into care
Maximise disabled people's housing opportunities
Consolidate progress made in training, information and accessibility of public transport, and enhance the mobility of those whose needs could not be met by public transport
Enhance the understanding of health services' contribution to independent living, to enable disabled people to have choice and control over their non-acute healthcare needs, and to enable them to manage their own long-term conditions
Enable individuals to remain in employment when they acquire an impairment or when an existing impairment or condition deteriorates; ensure that benefit and charging systems do not create unnecessary barriers to independent living
Promote personalisation, through ensuring that every disabled person in receipt of social care, and/or related funding, has the opportunity to have choice and control over the state funding they receive
Provide universal information, advice and advocacy service for people who need support in their lives
Promote a co-ordinated, strategic approach to investing in independent living for older disabled people, and will also seek to ensure that older disabled people's voices are heard and that they are enabled to participate in the development and delivery of services.
Seek to ensure a seamless transition into adulthood for young disabled people
Promote more joined-up working between health, education and social care to provide timely and flexible support where this is needed by families affected by parental disability
Monitor the progress on the aims of the Strategy, in particular through the Equalities Public Services Agreement (PSA)

42. Along with the publication of the Strategy, the Independent Living Scrutiny Group was established with a remit to report annually on the implementation of the strategy.[39]

Valuing People

43. In 2001, the then Government launched a strategy for people with learning disabilities, Valuing People.[40] This was followed in 2009 in by Valuing People Now,[41] which proposed a three-year strategy to take account of developments since 2001 and was accompanied by a further response to our predecessor Committee's Report, A Life Like Any Other? The Human Rights of Adults with Learning Disabilities.[42] In response to that Report, Valuing People Now adopted human rights as one of the four key guiding principles underpinning the strategy.

Right to Control

44. The Welfare Reform Act 2009 introduced the "Right to Control". The Right to Control was produced in close consultation with disabled people. Under the current Government, pilot schemes (the "Right to Control Trailblazers") were introduced by means of the Disabled People's Right to Control (Pilot Scheme)(England) Regulations 2010. In the Right to Control Trailblazers areas[43] disabled people are able to combine the support they receive from different sources in order to decide how best to spend the funding.

Political consensus

45. Progress so far with independent living was achieved with a general consensus that the organising principle of public service design and delivery should be to optimise choice, control and participation, in general accordance with the approach envisaged in Article 19 of the Convention.

46. The major UK political parties have made commitments to this approach. The previous Government instigated the ILS and the present Government have endorsed the tenets of the ILS. In evidence to us, the Minister for Disabled People, Maria Miller MP, said "we want to remove barriers to create opportunities for disabled people to be able to fulfil their potential and be fully participating members of society, very much building on the Independent Living Strategy".[44] The current Government have also continued the work of their predecessors in regard to the Right to Control.

47. We welcome the Government's continued commitment to removing barriers and creating opportunities for disabled people, and consider this to be entirely consistent with their obligations under Article 19 UNCRPD. The UK has an established position as a world-leader on disability rights and in relation to independent living in particular. We strongly encourage the Government to make every effort to maintain and build upon this status.

The current situation

48. Although progress has been made on implementing the right to independent living, recent assessments have indicated that there is still work to be done. The second annual report by the Independent Living Scrutiny Group,published in February 2011, says "As we move to the midway point of the five year strategy, we would expect to be seeing indications of the positive impact of the action plan. Unfortunately, this has not really been the case".[45] It noted that direct payments and personal budgets for adult social care had increased choice and control for those disabled people receiving them, and advocated the continuing development of personalisation. However, it raised concerns about the impact of funding cuts and benefit reform, and about continuing barriers faced by disabled people in terms of access to housing, transport and employment.

49. The most recent evidence, from the ODI's Life Opportunities Survey, confirms that this remains the case. The Survey found that 16% of adults with impairments experienced barriers to education and training, 57% experienced barriers to employment (compared with 26% of those without impairments), 75% experienced barriers to using transport (compared with 60%), 44% of households with at least one person with an impairment experienced barriers to economic life and living standards (compared with 29%) and 82% experienced barriers in leisure, social and cultural activities (compared with 78%).[46]

50. We note the significant disadvantage to disabled people which persists in relation to choice and control and levels of participation in economic and social life and the impact this has on their economic and social well-being, and on what many of our witnesses considered to be their enjoyment of basic human rights. We therefore welcome the Government's recognition that more progress is required to promote disabled people's right to independent living.

51. The Government should continue their commitment to delivering independent living by ensuring that the forthcoming Disability Strategy sets out a clear plan of action to make progress with regard to independent living as defined by Article 19, with milestones and monitoring mechanisms. The Disability Strategy should build on and update the outcomes framework set out in the current Independent Living Strategy.

Legislative underpinning of the right to independent living

52. The right to independent living is not currently underpinned by specific legislation. Instead, a matrix of related legislation and policy exists, which does not fully provide disabled people with the rights to self-determination in relation to matters affecting where and with whom they live, or choice and control over how their support needs are met.

53. In evidence to us, Scope argued that a "basic enforceable right is crucial for sustaining progress towards ensuring independent living for all disabled people".[47] The Social Care Institute for Excellence told us that the fact that disabled people do not enjoy choice and control is not a failure of policy but of implementation: "Making the right to independent living legally enforceable at an individual level, so that each disabled person has a clear entitlement to independent living and the services required to support it, would build on the body of policy work in a useful way".[48]

54. Article 4 of the Convention requires the Government to take measures to the maximum of its available resources to achieve progressively the full realisation of economic, social and cultural rights. But successive governments have not incorporated economic, domestic and social rights into domestic law. In this context the ICESCR is relevant. In 2007, the previous Government's 5th report to the UN Committee on Economic, Social and Cultural Rights, stated that "the ICESCR has not been and is not expected to be incorporated into domestic law. This means that the rights contained in the Covenant are not directly enforceable by domestic courts".[49] In 2009 the UN Committee urged "the State party [the UK] to ensure that the Covenant is given full legal effect in its domestic law".[50]

55. On four occasions in the last Parliament, Lord Ashley of Stoke introduced a private member's bill with the intention of establishing a legal right to independent living, but none of the bills was taken up by the previous Government, and they were consequently not passed.[51]

56. Successive governments have argued that the principles and objectives of the Convention are implemented through the policies, laws and practices of the welfare state. This raises the question as to whether the provision of housing options, support services and access to general services are subject to the discretion of the State, rather than being constitutional rights. The Scottish Human Rights Commission argued that "the failure as yet to incorporate the Disability Convention does limit the opportunities to enforce the right [...] to independent living".[52] Independent Living in Scotland argued that the Convention was "not part of domestic UK or European law and as such is not 'justiciable' in the domestic or European Courts. Given the inequalities and issues in accessing justice that disabled people face, we feel it is essential that the UK bring the rights in the UNCRPD into domestic law at the earliest possible opportunity."[53]

57. In England and Wales, the law regarding adult social care is currently undergoing a process of review, with the possibility of new legislation in the next parliamentary session. In this context, the Law Commission has recently produced a proposal to consolidate the law on adult social care,[54] describing the current situation as "a confusing patchwork of conflicting statutes".[55] The Law Commission's report recommends a unified adult social care statute for both England and Wales, and states that the new statute should establish that the overarching purpose of adult social care is to promote or contribute to the well-being of the individual. The statute would require the Secretary of State and Welsh Ministers to make regulations prescribing the eligibility framework for the provision of community care services, which local authorities would be required to use to set local eligibility criteria.

58. The report also recommended that in defining in statute the concept of "well-being", the following outcomes should be taken into account:

health and emotional well-being;
protection from harm;
education, training and recreation;
the contribution made to society; and
the securing of rights and entitlements.

The Social Care Institute for Excellence suggested in evidence to us that "independent living", as defined by the Convention, should be added to the list of outcomes.[56]

59. The Law Commission rejected the idea that a principle based on independent living should be included as a means of establishing enforceable legal rights to services. They concluded that "a principle based on an assumption of home-based living would not be suitable to be included as a principle in the statute. The key issue should be the person's wishes and feelings, and in effect this principle could skew choice in one particular direction."[57] This conclusion appears to be based on the assumption that independent living equates to "home-based living". Article 19 makes clear that disabled people should "have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement", and that the option that should be made available to people should include "in-home, residential and other community support services".

60. The Right to Control programme has provided disabled people assessed as eligible for public service support with a right to an individual budget. However, as yet this exists only in the eight "Trailblazer" areas. Any extension of the project will depend on the results of those pilot schemes, and the Government making appropriate regulations. Further, the Right to Control does not provide disabled people with a right to support.

61. The Equality Act 2010 is of critical importance to independent living. It prohibits discrimination in relation to access to goods, facilities and services, including public services and requires service providers to make reasonable adjustments proactively where not to do so would place disabled people at a substantial disadvantage.

62. The Public Sector Equality Duty, under section 149 of the Equality Act 2010, requires public authorities to have due regard to eliminating discrimination, advancing equality of opportunity and fostering good relations. This duty is a "process duty"—that is, questions of lawfulness concern the degree to which public authorities are able to account for having shown "due regard" and not in respect of the resulting degree of equality or inequality. A series of high profile cases have featured the consideration of the Duty in respect of local authority decisions to tighten social care eligibility criteria, including in Birmingham and the Isle of Wight.[58] In these cases, the actions of the local authorities were found to be unlawful because they had failed to demonstrate that they had taken account of the impact the decision would have on disabled people, and had failed to consult. The decisions themselves were not at issue.

63. The Right to Control is a welcome step towards establishing independent living as a right. If the evaluation of the "Right to Control Trailblazers" is positive, the Government should make regulations to roll out the scheme nationwide in both social care and primary health care.

64. We note that while the UK has made progress in developing a rights-based approach to the design and delivery of public service support to disabled people, disabled people in the UK do not enjoy a right to independent living in domestic law.

65. We regret that the Convention has not been incorporated into UK law and no underpinning legislation exists specifically to protect and promote the right to independent living. While we consider the existing matrix of human rights, equality and community care law to be instrumental in the protection and promotion of the right to independent living, we do not consider it sufficient. The right to independent living (as defined by Article 19) should be added as an outcome in any forthcoming Bill on adult social care in England.

66. Our inquiry has revealed that the current legal framework for giving effect to the right of disabled people to live independently and be included in the community is inadequate to ensure the effective enjoyment of that right in practice. Significant gaps have been shown to exist in the existing patchwork of laws and we have made a number of specific recommendations in order to fill those gaps, for example by implementing the right to control, and including independent living as an outcome in reformed community care law.

67. We remain concerned, however, that merely filling in the gaps in the current legislative framework will still not accord the right to independent living the legal status that its fundamental importance deserves. We hope that the Commission on a Bill of Rights will consider the arguments for and against expressly recognising the right of disabled people to independent living in any Bill of Rights for the UK. In the meantime, we recommend that all interested parties, governmental and non-governmental, immediately start work on assessing the need for and feasibility of free-standing legislation to give more concrete effect in UK law to the right to independent living.

68. Such legislation could be specifically designed to implement the rights recognised in Article 19 of the Disabilities Convention. Like the Child Poverty Act 2010, which achieved cross-party consensus at the time of its passage through Parliament, such a statute could set clear outcomes for government and public authorities to work towards, and to which they should have due regard when making both policy and spending decisions. This framework of nationally agreed outcomes would also help facilitate the portability of assessments between different local authority boundaries. The legislation could require national and local government to publish an independent living strategy at regular intervals, and provide for progress against that strategy to be monitored by an independent expert body. Such strategies would also enable government to demonstrate transparently that it is meeting its obligations under Article 4(2) of the Disabilities Convention to take measures to achieve progressively the full realisation of the social and economic rights which are included in Article 19. In developing such strategies, the Government and public authorities would be required to actively involve disabled people, in keeping with their obligations under Article 4(3) of the Disabilities Convention.

69. We recommend that the Government publish their assessment of the need for and desirability of such free standing legislation implementing the right to independent living in the light of the forthcoming first report of the UN Committee on Disabilities following its scrutiny of the UK's first compliance report.

37 Improving the Life Chances of Disabled People, Prime Minister's Strategy Unit, 2005. Back

38 Office for Disability Issues, Independent Living: A cross government strategy about independent living for disabled people, 2008, p.9 Back

39 An independent group of disabled people that offers the Government its views on progress on delivery of the Independent Living Strategy. It is chaired by Baroness Campbell of Surbiton, a member of this Committee. Back

40 Valuing People, DoH March 2001; Back

41 Valuing People Now, DoH 19 Jan 2009 Back

42 Further response Cm 7536 2009, 7thReport 2007-08 HL Paper 40, HC Paper 73 Back

43 Essex County Council, Leicester City Council, London Borough of Barnet, London Borough of Newham, Surrey County Council, Barnsley Metropolitan Borough Council, Sheffield City Council and Greater Manchester. Back

44 Q 246 Back

45 p. 4 Back

46 Life Opportunities Survey, Wave One Results, 2009/11, Office for Disability Issues, 8 December 2011 Back

47 IL 85 Back

48 IL 42 Back