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 For Great Britain (but not Northern Ireland) it repealed and replaced the DDA (as amended).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
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."
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".
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
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.
43. In 2001, the then Government launched a strategy
for people with learning disabilities, Valuing People.
This was followed in 2009 in by Valuing People Now,
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.
In response to that Report, Valuing People Now adopted
human rights as one of the four key guiding principles underpinning
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
disabled people are able to combine the support they receive
from different sources in order to decide how best to spend the
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".
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".
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%).
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
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".
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".
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
2009 the UN Committee urged "the State party [the UK] to
ensure that the Covenant is given full legal effect in its domestic
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.
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".
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."
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,
describing the current situation as "a confusing patchwork
of conflicting statutes".
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
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.
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."
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
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.
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
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
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
Office for Disability Issues, Independent Living: A cross government
strategy about independent living for disabled people, 2008,
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
Valuing People, DoH March 2001; Back
Valuing People Now, DoH 19 Jan 2009 Back
Further response Cm 7536 2009, 7thReport 2007-08 HL Paper 40,
HC Paper 73 Back
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
Q 246 Back
p. 4 Back
Life Opportunities Survey, Wave One Results, 2009/11, Office
for Disability Issues, 8 December 2011 Back
IL 85 Back
IL 42 Back
Fifth Periodic Report from the United Kingdom, July 2007 E/C.12/GBR/5,
paras 74-5 Back
Concluding Observations of the Committee on Economic, Social and
Cultural Rights, 22 May 2009 E/C.12/GBR/CO/5, para 13 Back
Disabled Persons (Independent Living) Bill, introduced in the
2005-06, 2006-07, 2007-08 and 2008-09 sessions. Back
IL 81 Back
IL 30 Back
Law Commission, Adult Social Care, 10 May 2011, HC 941 Back
Ibid, p. 8 Back
IL 42A Back
Op. cit , para 4.36. Back
R (on the application of Rahman) v Birmingham City Council
(2011); R (on the application of JM and NT) v Isle of Wight
Council (2012) Back