5 Implementing Article 19issues
and challenges |
The impact of current reforms
125. Many of the arrangements underpinning independent
living in the UK are currently the subject of reform. Chapter
4 examined the extent to which the Government have fulfilled their
obligations of conduct with regard to the Convention in terms
of process, particularly in the context of these reforms. This
chapter will examine the possible impacts of the reforms themselves
in more detail. The two issues are closely intertwined. The
UN Committee on Economic, Social and Cultural Rights states that
any deliberately retrogressive measures require careful consideration.
Its General Comment 4 on the right to adequate housing suggests
that a "retrogressive measure" might involve "a
general decline in living and housing conditions, directly attributable
to policy and legislative decisions by States Parties, and in
the absence of accompanying compensatory measures".
The State Party must act within its "maximum resources",
so any such reduction must be both necessary, and proportionate
to wider reductions in public spending, and also subject to appropriate
evaluation. Evidence discussed in Chapter 4 suggests that in terms
of impact assessment and consultation, the reforms discussed below
may not meet this test.
126. Four developments were of particular concern
to witnesses: reduction of social care expenditure at local authority
level; the replacement of Disability Living Allowance by Personal
Independence Payment (PIP); the closure of the Independent Living
Fund; and the cap on housing benefit. Some of these issues were
also discussed in our legislative scrutiny Report on the Welfare
Reform Bill, and
the reduction of social care expenditure is also relevant to the
evidence we received about the wider social care policy agenda
which is covered below. The following discussion treats each
of the four reforms separately, but witnesses were particularly
concerned that the overall cumulative impact of the reforms might
lead to retrogression of the enjoyment of rights under Article
19. For example, the College of Occupational Therapists told us
that current policy proposals "run the risk of substantially
reducing the rights of disabled people to independent living through
the possibility of unintended consequences of interacting cumulative
while the Equality and Human Rights Commission said that "the
cumulativeeven if unintendedeffects of DLA reform
and cuts in local authority expenditure risk seriously eroding
the enjoyment of Article 19 of the Convention".
127. Many of our witnesses provided examples of how
proposed reforms could lead to retrogression. RNIB Action for
Blind People reported on a 40% budget reduction made by Norfolk
County Council to a Sensory Support Unit for people who had lost
their sight. They argued that this would result in people having
to move into residential care or becoming more isolated, and also
that this would lead to greater costs in the longer term.
The Choices and Rights Disability Coalition reported fears that
people might have to move back with parents or family, or into
while David Webdale had concerns about his own situation: "without
the ILF I could not continue to employ care staff, so I could
not get to work, and as my parents get older my only future would
be in some kind of residential care home".
LOCAL AUTHORITY EXPENDITURE
128. Local authorities are required to assess the
care and health needs of their populations, determine which levels
of the national "Fair Access to Care Services" (FACS)
eligibility will qualify for services, and to assess the
need for care and support of individuals.
Fair Access to Care Services (FACS) criteria
|FACS is a process to determine eligibility for social care support, based on risks to independence over time. Its aim is to help social care workers make fair and consistent decisions about the level of support needed, and whether the local authority should pay for it. The criteria are as follows:
- life is, or will be, threatened; and/or
- significant health problems have developed or will develop; and/or
- there is, or will be, little or no choice and control over vital aspects of the immediate environment; and/or
- serious abuse or neglect has occurred or will occur; and/or
- there is, or will be, an inability to carry out vital personal care or domestic routines; and/or
- vital involvement in work, education or learning cannot or will not be sustained; and/or
- vital social support systems and relationships cannot or will not be sustained; and/or
- vital family and other social roles and responsibilities cannot or will not be undertaken
- there is, or will be, only partial choice and control over the immediate environment; and/or
- abuse or neglect has occurred or will occur; and/or
- there is, or will be, an inability to carry out the majority of personal care or domestic routines; and/or
- involvement in many aspects of work, education or learning cannot or will not be sustained; and/or
- the majority of social support systems and relationships cannot or will not be sustained; and/or
- the majority of family and other social roles and responsibilities cannot or will not be undertaken
· there is, or will be, an inability to carry out several personal care or domestic routines; and/or
- involvement in several aspects of work, education or learning cannot or will not be sustained; and/or
- several social support systems and relationships cannot or will not be sustained; and/or
- several family and other social roles and responsibilities cannot or will not be undertaken
- there is, or will be, an inability to carry out one or two personal care or domestic routines; and/or
- involvement in one or two aspects of work, education or learning cannot or will not be sustained; and/or
- one or two social support systems and relationships cannot or will not sustained; and/or
- one or two family and other social roles and responsibilities cannot or will not be undertaken
129. Adult social care is both needs-tested through the FACS criteria,
and means-tested. Charging for residential care, including the
personal needs allowance, is set nationally. People with more
than £23,250 in capital are likely to be charged the full
cost. Local authorities exercise discretion in deciding whether,
whom, and how much to charge for services for people living at
home. Overall, local authority budgets face reductions of 28%
over the next four years. In the 2010 Comprehensive Spending
Review, the Government announced an extra £2 billion in funding
for social care, divided between local authorities and the NHS,
although this funding has not been ring-fenced.
130. The Association of Directors of Adult Social
Services referred to "underfunding relative to demand"
This is in the context of a reduction of £1bn in adult social
care budgets for 2011-12 (according to ADASS's survey of local
authority budgets). The Local Government Association told us that
local government had been particularly hard hit by reductions
in public expenditure
and that the additional funding made available for social care
was "more than offset by reductions in overall funding for
They stated that "given the expected rise in the annual cost
of adult social care we therefore anticipate a multi-billion pound
shortfall by 2014-15 and have concerns about this funding gap
131. The Norfolk Coalition of Disabled People submitted
to us a report they had commissioned on the cumulative impact
of welfare reforms and reductions in local authority expenditure,
with case studies of individual households who were facing reductions
in their income together with reductions in local authority services.
They argued that, in addition to an anticipated loss of £526
per year for each claimant as a result of central Government reductions,
reductions in care services implemented by Norfolk County Council
would amount to a further £500 per year reduction.
132. Scope argued that the additional £2 billion
for social care in the Spending Review would go some way towards
addressing concerns about reductions in local authority funding,
but only if it was ring-fenced. They said that, as it was not
ring-fenced, it would very likely be diverted into other budgets.
Scope also told us that independent living should be seen as a
preventative agenda, arguing that long-term costs can be mitigated
and that "the Government should seek to shift the focus of
the debate from costs towards expenditure on independent living
options as an investment that promotes better value for money
and improved outcomes for disabled people".
133. We recognise
the exceptional economic circumstances facing the UK and the challenges
involved in implementing the stringent cuts in public spending
the Government feel are necessary. However, in tackling these
economic challenges the Government must give due attention to
their obligations under international law.
134. We welcome
the additional £2 billion for social care set out in the
2010 Spending Review but are concerned that, without ring-fencing,
it will not make up for anticipated shortfalls in social care
budgets. Any reduction in care budgets, particularly in the context
of rising care costs, presents a serious risk of retrogression
in the realisation of the right to independent living.
135. We concur
with Scope's view that expenditure on independent living should
be seen as an investment and that such an approach will reduce
long-term costs and promote better outcomes for disabled people
and for society in general. We urge the Government to adopt this
approach to the funding of adult social care and other budgets
which contribute towards independent living.
136. In the light of pressure on local authority
budgets, many witnesses complained of a restriction in eligibility
under the FACS criteria. The Association of Directors of Adult
Social Services told us that 78% of councils now only met substantial
or critical needs and 4% only critical.
The Independent Living in Scotland Project said that the concentration
on critical and substantial need was short-sighted economics,
resulting in a bigger and bigger backlog of people whose needs
had developed through not being addressed earlier. They also suggested
that it would reduce participation in the labour market, thereby
reducing people's ability to contribute financially to society.
Karen Ashton, of Public Law Solicitors, argued that a move to
critical-only provision might be in breach of Article 19, as it
risked denying people personal assistance to prevent isolation
or segregation from the community.
137. The Minister for Care Services told us that:
"central government has never had an overarching
responsibility for setting national eligibility or for setting
an overall direction for how individual local authorities deliver
their legal obligations. In the last 12 months we have had reports
and recommendations from the Law Commission on how we reform social
care law, to make it both clearer and more orientated around outcomes
[...] and [...] recommendations from the Commission on Funding
of Care and Support, which has recommended that we examine greater
consistency around eligibility [a slightly different point which
will be discussed below]".
He said that the Government were in a dialogue with
the sector about how reform could be taken forward and a White
Paper would be published in April.
138. We are
concerned that the restriction of Fair Access to Care Services
eligibility criteria to critical-only risks giving rise to individual
breaches of Article 19(a) of the Disabilities Convention and to
retrogression in the realisation of the rights in Article 19(b).
We recommend that the Disability Strategy includes measures to
monitor the impact of restrictions on eligibility for adult social
care on disabled people's right to independent living.
DISABILITY LIVING ALLOWANCE
139. The Welfare Reform Bill seeks to replace the
Disability Living Allowance with a Personal Independence Payment
(PIP). The Government argue that the change is compliant with
UNCRPD as PIP is intended to target resources at those who need
it most. They believe the changes are justifiable, as they support
those most affected by disability and introduce a fairer, more
consistent and evidence-based assessment system.
140. The reforms are designed explicitly to achieve
a 20% saving, and recent Government figures suggest that 500,000
fewer people would receive PIP in comparison with DLA.
Much of the written evidence we received expressed concern that
the reform was driven by the aim of reducing expenditure. For
instance, the Social Care Institute for Excellence told us that
"the aim of targeting (DLA/PIP) is, by definition, to reduce
the number of disabled people receiving help towards disability-related
141. We also received evidence concerning the proposals
for assessing eligibility for PIP. Disability Alliance argued
that there was a risk the new assessment for the Personal Independence
Payment would generate "a perverse incentive for disabled
people not to use aids and adaptation. This would impact on the
ability to live independently".
Guide Dogs for the Blind Association said that the proposals "would
penalise those who used mobility aids, as it meant they were more
able to get around and consequently would need less benefit".
Breakthrough UK agreed, arguing that, when assessing mobility,
it was important to "take into consideration the wider context
of how their mobility equipment interacts with their environment,
[and] of how these items are acquired and paid for".
The Government's most recent assessment of PIP addresses some,
but not all, of these issues.
142. We also heard concerns about whether the proposed
new assessment would be entirely based on measuring impairment.
Scope said that the proposed changes to DLA put an emphasis on
impairment rather than extra cost. They argued that there was
"very little relationship between the severity of your impairment
and the additional costs you face" and that the payments
would therefore be wrongly targeted.
They referred to:
"people with Asperger's syndrome and who have
learning difficulties who face substantial barriers in travelling
independently, making decisions by themselves and going about
their community and accessing leisure activities. These people
incur many, many additional costs because of the way that society
is structured. Therefore, just because they have a less severe
impairment, that does not mean they should be cut out of the system."
143. The Government initially proposed to remove
the mobility component of DLA/PIP for people living in residential
care in order to remove overlaps in provision. These issues were
recently examined by the Low Review,
which "found no evidence of overlap in the support offered
by the mobility component of DLA and that offered by local authorities
and providers" (Low Review, executive summary). The Government
have now announced that people living in residential care will
continue to be eligible for the mobility component of PIP.
144. The Low Review has shown the benefit of working
together with disabled people's organisations to ensure that welfare
reform fulfils the Government's stated aim of promoting opportunities
for disabled people's participation in, and contribution to, society.
Inclusion London, together with many other organisations and
individuals, told us that "involvement of disabled people
in policy development [...] is crucial for disabled people's independence,
choice and control."
The considerable concern that has been expressed about the aims
and detail of the replacement of DLA with PIP illustrates the
need to involve disabled people's organisations in the development
and implementation of the new benefit. Such involvement is required
by Article 4(3) of the Convention.
145. We welcome
the Government's recent decision that disabled people in residential
settings should continue to be eligible for DLA/PIP mobility component.
However, we recommend that, in order for PIP to play its part
in promoting independent living, the new assessment system and
not create a disincentive to using aids and adaptations;
to be based on the fundamental principle that it is a benefit
based on the additional costs of impairment, and not based on
medical diagnosis; and
be independently reviewed with the involvement of disabled people's
organisations before being rolled out nationally.
fewer people will receive PIP in comparison with those currently
receiving DLA. DLA was conceived as a means to enable disabled
people to meet the extra costs associated with overcoming barriers
to independent living. We fear the introduction of PIP will restrict
the ability of disabled people to overcome these barriers and
enjoy the right to independent living
INDEPENDENT LIVING FUND
147. The Independent Living Fund is an Executive
Non-Departmental Public Body of the Department for Work and Pensions,
which provides discretionary cash payments directly to disabled people
so they can purchase care from an agency or pay the wages
of a privately employed Personal Assistant. This enables
disabled people to choose to live in their communities rather
than in residential care. The ILF is now closed to new applicants,
but funding for existing users is protected for the life of this
The Government committed to carrying out a consultation on a
replacement for the fund after they had received the report of
the Dilnot Commission (which reported in July 2011). In December
2011, the Minister for Disabled People announced that that consultation
would take place in the spring of 2012.
148. Many witnesses were concerned about the closure
of the Fund. The UK Disabled People's Council argued that the
Government's decision to close the Independent Living Fund in
the future would have "brutal consequences" for many
disabled people who might rely on ILF grants to top up their direct
The National Centre for Independent Living argued that it was
too early to assess the full impact of closing the fund. However,
while the fund was closed on the assumption that requirements
for independent living would be "delivered equitably as part
of local authorities' broader independent living strategies",
bodies such as the Association of Directors of Adult Social Services
were saying that they "simply have not got the money to make
up the shortfall".
149. Independent Living Alternatives said that "what
scares people the most is that that money [from the ILF] is going
to end up going into the social services pot and just being lost".
However, the Independent Living Association reported a mixed
response on the issue. Some people raised concerns about funding
disappearing into the social services pot, but others suggested
that while the ILF was a discrete pot of money it "came with
all this baggage of separate reassessments and sometimes not very
flexible rules around [its] use".
The Local Government Association argued that, in general, ring
fencing was a barrier to the greater integration of services.
150. The Association of Directors of Adult Social
Services confirmed that the closure of the Fund was having "an
adverse impact". In evidence to us they said that "we
are already experiencing people coming to us in adult social care
who previously would clearly have gone to the Independent Living
Fund" and that "with the majority of authorities having
eligibility criteria of substantial or critical, there is little
doubt that there will be many people who cannot now be assisted
in the way that the Independent Living Fund was able to assist
151. The Minister for Disabled People told us that
"ILF [...] was never designed to replace mainstream care
and support. It was clear that it was increasingly becoming a
postcode lottery for people who were in receipt of it" and
that "we are absolutely clear that people who are currently
in receipt of payments under the ILF will continue to receive
absolutely the level of support that they would expect on an ongoing
basis until 2015. Obviously, beyond the next spending review
none of us sitting here can give any further commentary".
152. We are
extremely concerned that the closure of the Independent Living
Fund to new applicants, with no ring-fenced alternative source
of funding, may severely limit the ability of disabled people
to participate in society. We would expect the Government to address
this issue in their consultation paper on replacement funding
to be published in early 2012 and to ensure that this change in
policy does not result in individual breaches of the rights in
Article 19(a) and retrogression as far as Article 19(b) is concerned.
153. Reforms to housing benefit, such as the proposed
cap contained in the Welfare Reform Bill, have caused particular
concern for disabled people. Disabled people often live in adapted
housing, and rely on local formal and informal support mechanisms,
and would therefore likely to be more affected than the general
population by any need to move house. Organisations such as the
Mental Health Foundation, the RNIB, Leicestershire Centre for
all submitted evidence that housing benefit was an important part
of the range of support needed by many disabled people and their
families. The College of Occupational Therapists argued that "Inappropriate
housing is a major barrier to personal independence in the home.
It also bars disabled people from 'full inclusion and participation
in the community,' and from developing and using their skills
and potential to the fullest degree".
154. The College of Occupational Therapists criticised
the proposed housing benefit cap, and penalties for those deemed
to be under-occupying their property,
on the grounds that compelling people to move might reduce access
to their support networks.
Inclusion London told us that the cap on housing benefit "will
disproportionally impact on disabled people because a higher proportion
of disabled people live in social housing and are four times more
likely to claim Housing Benefit than non-disabled people".
Disabled People Against Cuts argued that forthcoming reductions
in the amount of Local Housing Allowance that can be claimed in
the private rented sector would severely limit opportunities for
those disabled people whose support or equipment needs meant they
required a larger property.
155. We also received evidence from the National
Development Team for inclusion (NDTi) suggesting that reductions
in funding for interest-only mortgages through income support
had affected disabled people's housing opportunities;
and we heard from one family of how these changes were restricting
their daughter's access to housing.
These changes are also said to be impacting on the Government's
own scheme, Home Ownership for People with Long Term Disabilities
156. The Minister for Disabled People told us, with
regard to problems of people losing support networks when forced
to move, that "our impact assessment looked at the sorts
of issues you are talking about, and we recognise what you are
talking about. That is one of the many reasons why the Discretionary
Housing Payment budget has been increased so significantly [trebled
157. The Minister for Housing told us that the impact
of the Housing Benefit cap on disabled people had been taken into
account in the Government's impact assessment, but expressed his
view that he did not believe that "anybody in this country
has the right to live in any street they want to live in at the
cost of the taxpayer." He pointed out that up to a third
of properties within a Local Housing Allowance area would still
be available for any individual.
The Minister also pointed to the increase in Discretionary Housing
Payment, arguing that it would enable local authorities to assist
people in not having to move, and that this would very likely
be used to support disabled people. With regard to disabled people
being forced to move from homes which had been specially adapted
for their needs as a result of changes to funding the Minister
told us that he did "not want [adaptations to housing] to
be made and then for people to be forced to move from homes where
those adaptations have been made a great cost, and there is disruption
to people's lives and cost to the taxpayer".
The Government, in their written evidence to us, stressed that
those in receipt of DLA or Attendance Allowance would be exempt
from the housing benefit cap.
158. In spite of reassurances from the Government
that disabled people will be protected from the full impact of
the changes to Housing Benefit, the evidence we received demonstrates
a large degree of concern among disabled people about the impact
of the reform on their ability to enjoy adequate housing provision
taking account of their particular needs.
159. We welcome
the Government's statements that they do not wish to see people
forced to move from houses which have undergone adaptation, but
the interaction between where a person lives and other elements
of the right to independent living go further than the issue of
160. We welcome
the increase in the Discretionary Housing Fund, but are concerned
that its discretionary nature means it will not provide an adequate
guarantee that the right of disabled people to exercise choice
and control over where they live will be consistently upheld in
the light of reductions in Housing Benefit.
161. The range
of reforms proposed to housing benefit, Disability Living Allowance,
the Independent Living Fund, and changes to eligibility criteria
risk interacting in a particularly harmful way for disabled people.
Some disabled people risk losing DLA and local authority support,
while not getting support from the Independent Living Fund, all
of which may force them to return to residential care. As a result,
there seems to be a significant risk of retrogression of independent
living and a breach of the UK's Article 19 obligations.
162. We recommend
that the Office for Disability Issues, working with the devolved
administrations and local authorities, monitor the impact of reform
and spending decisions on the right to independent living and
undertake to promote innovative ways through which to mitigate
their impact. This should include reporting on to what extent
reforms to the ILF, DLA and housing benefit are enabling the Government
and local authorities to deliver their Article 19 obligations.
Adult social care
163. Adult social care is a particularly important
policy area in terms of independent living, as it is a key delivery
mechanism for support that many disabled people need to go about
their daily lives. In addition to concerns about cuts in local
authority expenditure a number of issues relating to adult social
care were raised in evidence which are relevant to the implementation
of Article 19. These include the personalisation of social care
to deliver more choice and control; the "portability"
of care packages; choice and control in the context of residential
care settings; the role of regulation and inspection; and commissioning.
PERSONALISATION OF ADULT SOCIAL
164. Measures which transfer power to disabled people
to exert choice and control over their living arrangements and
which provide people with the means to fashion the care and support
around their own aspirations are central to the implementation
of Article 19. Earlier developments in this area included the
establishment of the Independent Living Fund in 1988, the Community
Care (Direct Payments) Act 1996 and the piloting of individual
budgets in 2007-09. Adult social care is one of the funding streams
included in the Right to Control Trailblazers established under
the Welfare Reform Act 2009. Current policy in England is to
roll out personal budgets to everyone eligible by 2013, with the
emphasis on direct payments as the primary form of budget. In
addition, the Health Act 2009 introduced personal budgets for
non-acute health care in pilot areas.
165. We received evidence which suggested that while
some local authorities viewed further personalisation as a way
to mitigate the effects of cuts through innovation and greater
integration of budgets and services, others were potentially undermining
choice and control by imposing restrictions on how personal budgets
could be spent as a means of targeting expenditure. For instance,
Disabled People Against Cuts told us that in many cases personalisation
had not meant an improvement in choice and control over their
lives for disabled people but instead a rationalisation of services
and a reduction in care funding allocated.
A recent report by Demos, funded by Scope, suggested that a growing
minority of local authorities were allocating a cash amount in
personal budgets lower than the equivalent value of the care previously
provided, and stated that there was "a risk the personalisation
agenda will be subsumed by the need to reduce costs".
166. The National Association of Adult Placement
Services told us that some councils had "tried to impose
unnecessary and damaging rules to restrict people's use of personal
budgets or Direct Payments, or have told people they can only
have a Direct Payment if their allocation is at least a minimum
167. While personalisation has the potential to increase
choice and control, and may lead to innovative methods of delivering
services more efficiently, there is the potential that it might
be seen a means to delivering services more cheaply, but not necessarily
as effectively as before.
and local government should monitor and actively promote the innovative
practices of local authorities which employ personalisation effectively
to mitigate the impact of spending cuts. The Government should
monitor the extent to which choice and control is being diminished
or increased by the roll out of personal budgets, and take action
if the goal of increasing choice and control is not being realised.
169. We welcome
the Government's pilot scheme to extend personal budgets to primary
healthcare. They should also monitor this scheme with regard to
the increase or reduction of choice and control, and take action
if there is no increase.
PORTABILITY OF CARE
170. The Scottish Human Rights Commission was among
a number of witnesses concerned about a lack of "portability
of care". These concerns included "variations in eligibility
criteria between local authorities, requirements for different
assessments in different areas meaning a lack of assurance on
similar level of provision and variation in charging for community
care meaning that it may be financially unviable for disabled
people to move".
They thought that this resulted "in barriers to disabled
people accessing work and higher education in other local authorities,
as well as generally exercising their right to freedom of movement
and choice of residence within the country".
171. These concerns were endorsed by a number of
witnesses. For example, John Evans
and Diane Mulligan
both told us that a lack of portability was a barrier to accessing
Article 19 rights. Inclusion London argued that a lack of portability,
coupled with changes to housing benefit, would be a "double
whammy" whereby people were forced to move to cheaper areas
where their care package might not be preserved.
172. The Personal Care at Home Act 2010, which receive
Royal Assent under the previous Government, would have allowed
for the full portability of care packages, including both assessment
and the receiving authority's accepting the individual's existing
care package for the first six months until it could be suitably
modified to the now socio-geographical environment. The present
Government have decided not to commence the Act.
173. The Dilnot Commission, established in July
2010 to examine the funding of care and support, recommended the
Government introduce national eligibility criteria and portable
assessments in order to ensure consistency. The Government told
us that these proposals would feed into the White Paper on funding
of adult social care, which is due to be published in April 2012.
174. However, although this has been welcomed, some
organisations suggested it did not go far enough. The RNID said:
"The Government has committed to greater portability
of social care assessment, something that we welcome. However,
we would like this to go a step further and give assurances that
people will be able to move between local authority areas and
into more independent living arrangements without changes to their
entitlement to care and support".
175. We welcome
the Government's intention to consider introducing portable assessments.
However, we are concerned that this may be insufficient to ensure
the enjoyment of rights under Article 19, in particular the right
to choose one's place of residence and where and with whom one
lives on an equal basis with others. We urge the Government to
consider whether further action is required.
176. There is sometimes a misconception that the
term "independent living" refers only to people living
in their own homes and that it does not apply to those living
in residential care. However, as stated at the beginning of our
Report, independent living means "all disabled people having
the same choice, control and freedom as any other citizen".
The detail of independent living, as set out in Article 19, also
applies to people in residential settings, namely:
- the opportunity to choose where
and with whom you live;
- access to support, including personal assistance
necessary to support living and inclusion in the community, and
to prevent isolation or segregation from the community;
- access, on an equal basis with others, to community
services and facilities for the general population.
177. As Sense noted, it is the nature of support
which a person receives which determines whether someone is able
to access their Article 19 rights: "A person could be living
in their own home but if they are receiving little or no support
then they will have no choice, control, or freedom. Similarly
a person living in a residential setting could have a package
of care which enables them to live the life that they choose and
to be included in their local community".
178. We heard evidence from Mr Doug Paulley, who
lives in a residential home. He told us that: "Having choice
and control over such things as who supports you and when and
how; the ability to get out and about; the ability to access employment
and educationthese are all very limited, as is some involvement
in both the policy setting and your everyday experience, your
everyday care provision".
179. Recent reports, such as that concerning Winterbourne
View care home, indicate that sometimes significant levels of
abuse of people's human rights is taking place in some care homes.
The Care Quality Commission told us that when they carried out
inspections of a sample of 10% of private home care providers,
12% were "non-compliant" on the outcome of "respecting
and involving people" and "28% of them were non-compliant
on the outcome on care and welfare", and thereby proper planning".
When asked whether the Government should do more to promote awareness
of human rights amongst providers, Louise Guss from the CQC replied:
"There can never be enough promotion, in my view, of the
human rights of people who use social care and health services."
180. People First on the Isle of Wight raised particular
concerns about a lack of funding for advocacy for people in residential
care. Sense provided
an example of someone living in a residential home who was not
provided with a communicator and who thus had no choice or control
in their daily life.
181. The Government
should include in its Disability Strategy Action Plan a commitment
to enable disabled people living in residential settings to access
their full Article 19 rights. It should also set out actions
to achieve this commitment, and establish detailed outcomes against
which progress can be measured and monitored. The Government
should also ensure that residential care home providers are aware
of the UNCRPD and of their role in assisting in its implementation.
182. Shaping Our Lives told us of young people, living
in residential care, who "want to be in employment and want
to have a life that is like the life of their peers who are nondisabled".
They suggested that employment should be considered a right in
its own regard.
Doug Paulley described the way means-testing affected his freedom
to benefit from paid employment.
While earned income is not taken into account in means-testing
of domiciliary services or direct payments for people living in
their own homes, people who are in care homes may only keep a
"personal allowance" of £22.60 per week (£23.00
in Wales) of any earned income before the rest is taken to pay
for their placement.
183. The Minister for Care Services responded to
these concerns by telling us that, if a disabled person could
engage in paid employment, then "being in a residential care
setting is probably an entirely inappropriate setting for them
to be in in the first place".
He told us that the issue of personal allowances would be considered
in the forthcoming White Paper on adult social care, particularly
in the context of whether direct payments and personal budgets
should be available to people in residential care. The Minister
for Disabled People pointed out that someone in residential care
could receive support from Access to Work and also the Work Programme
and Work Choice.
184. There appears
to be an anomaly in the charging policy for residential care which
creates a significant work disincentive, thus impeding access
to independent living. The Government also appear not to recognise
the extent to which people living in residential care are able
to engage in paid work. We urge the Government to take action
to remove this disincentive as soon as possible.
THE ROLE OF INSPECTION AND REGULATION
185. Service providers, whether of residential, domiciliary
or community services, have a key role to play in enabling disabled
people to have autonomy and access similar opportunities to non-disabled
people. The Minister for Care Services told us that requirements
under Regulation 17 of the Health and Social Care Act 2008 required
providers to "make suitable arrangements to ensure the dignity,
privacy, and independence of service users", and to ensure
"that service users are enabled to make, or participate in
making, decisions relating to their care or treatment."
He said the Government "would expect the CQC, as part of
its ongoing work around inspection, to be making sure that they
are satisfied that those standards are bring met".
186. However, we received evidence from the Mental
Health Foundation of a lack of awareness amongst service providers
of how, for example, people living with dementia could and should
have more choice and control over the support they need.
The Equality and Human Rights Commission's recent inquiry into
home care services for older people found evidence of a breach
of older people's human rights as a result of poor care practices
and a failure to involve people in decisions about the services
they received. 
187. The Care Quality Commission told us that for
them "it is much harder ... to regulate non-institutional
care and home-based models of care" than residential or institutional
fact that it took a television programme to expose human rights
abuses at Winterbourne View indicates that the inspection regime
for institutional settings is not working as well as it should.
188. The Government
should, in partnership with disabled people's organisations, monitor
the extent to which regulation and inspection frameworks are promoting
independent living in both domiciliary and institutional settings.
The Disability Strategy should include the role of regulation
and inspection in promoting Convention rights.
189. The Equality and Human Rights Commission's inquiry
into home care services for older people found that commissioning
practices too often focussed on a rigid list of tasks, rather
than what older people actually wanted, and that ensuring an acceptable
quality of care was not given a high enough priority.
190. The Government told us that the Health and Social
Care Bill "will place local authorities and GP Consortia
under a new duty to agree a Joint Health and Wellbeing Strategy
and to agree commissioning strategy based on an assessment of
local need" which would amount to "a strengthening of
duties and requirements on local organisations to work together,
not just on the needs assessment, but also in turning that assessment
into a shared commissioning strategy that should underpin their
191. However, the role of Care Quality Commission
(CQC) is more limited than its predecessors in terms of regulating
commissioning. CQC told us that:
"the biggest issue is that we no longer comment
on the quality of commissioning. We do not comment on the relative
weight that commissioners give to home-based care or on their
support for independent living. We merely [
] focus entirely
on the providers themselves and not on how services are commissioned."
They added that the Health and Social Care Bill currently
making its way through Parliament would specifically remove their
ability to comment on NHS commissioning.
192. Human rights have been explicitly written in
to commissioning strategy in Scotland, a development which was
commended by the Scottish Human Rights Commission.
The guidance, which was jointly published by the Scottish Government
and COSLA, "aims to assist public bodies to make decisions
that comply with all applicable polices, European Union and domestic
law and human rights obligations".
193. The NHS
Commissioning Board should produce guidance for Health and Wellbeing
Boards on the need to incorporate human rights into their commissioning
strategies, emulating the guidance of the Scottish Government.
194. The Health
and Social Care Act 2008 included a provision which ensured private
and third sector care homes were defined as carrying out a public
function when providing publicly-arranged care, bringing them
within the scope of the Human Rights Act 1998. The current Health
and Social Care Bill should be similarly amended to extend this
definition to provision of care at home.
Access to information and advocacy
195. A number of witnesses highlighted challenges
faced by people who needed access to advice, information and advocacy
if they were to take full advantage of personal budgets and direct
payments (for example older people with high support needs and
people with learning disabilities.) This is relevant not only
to Article 19, but also to Article 12 which requires States Parties
to "take appropriate measures to provide access by persons
with disabilities to the support they may require in exercising
their legal capacity". Breakthrough UK told us of one person
who, on initial assessment for Employment Support Allowance, was
deemed ineligible, and was subsequently deemed eligible when she
had received professional assistance. They argued that it was
difficult for disabled people to access their entitlements without
such support. They argued that "advocacy, advice and information,
provided by other disabled people [
] is a cornerstone, without
which independent living cannot become a reality".
196. Evidence was submitted to us about the importance
of independent sources of information, advice and support to use
and members of our Committee also heard this message on an informal
visit to Essex Centre for Independent Living.
197. We received evidence that funding for advocacy
was under threat. People First (Isle of Wight) reported that
"the local authority has withdrawn funding for advocacy,
saying that people need to pay for this from their personal budgets,
but the reality is they do not have enough money in personal budgets
to be able to pay for advocacy". They added that a lack
of advocacy was of particular concern in care homes, but that
it was also necessary to guarantee quality of service provided
via personal budgets.
198. The Government acknowledged that "Local
disability organisations can play an important role in providing
the assistance that disabled people may need to exercise choice
and control over their lives, ensuring that sufficient information,
advice and advocacy is available".
Sections 1 and 2 of the Disabled Persons Act 1986 established
the right to advocacy for disabled people. However, the relevant
measures have never been implemented by successive governments.
to information, advice and advocacy is critical for all disabled
people to benefit from personalisation. The Government should:
- monitor access
to information, advice, and advocacy services in the context of
the roll-out of personal budgets;
- continue to support and develop
the role of Disabled People's User-Led Organisations to enable
them to provide independent information, advice, and advocacy
- implement the advocacy provisions
in sections 1 and 2 of the Disabled Persons Act 1986 when reforming
community care legislation.
Access to housing and to community
facilities on an equal basis with others
200. In addition to concerns about changes to housing
benefit raised earlier in this Report, and about access to adequate
housing being key to independent living, we also received evidence
suggesting that there was a lack of suitable housing available.
The Spinal Injuries Association told us that this lack was contributing
to newly injured people "increasingly being discharged straight
from hospital into a Care or Nursing home."
The College of Occupational Therapists argued that "inappropriate
housing is a major barrier to personal independence in the home.
It also bars disabled people from 'full inclusion and participation
in the community'".
201. The Minister for Housing said that he had invited
the Home Adaptations Consortium to publish a good practice guide
with the intention of speeding up housing adaptations.
However, we also received evidence that there has been a significant
reduction in the number of housing adaptations funded since 2008.
202. Access to housing directly relates to access
to other facilities in the community, and we received evidence
suggesting that access to transport in particular was a problem.
Breakthrough UK submitted evidence that disabled people feel
that access to housing, transport and community facilities were
an important part of independent living and participation in family
and community life: "If there are transport barriers, for
example, then people will not be able to make effective use of
their support at home or work".
Guide Dogs for the Blind Association stressed the importance of
accessible public transport, but suggested that cuts to concessionary
fares and local public transport services were leaving some disabled
people "isolated and unable to travel as and when they need".
People First also submitted evidence of reductions in public
transport which have "had a serious impact on many individuals
and their ability to move about in the community".
203. The Government told us that over one in five
disabled people had difficulty using transport and that "disabled
adults are less likely to use all modes of transport compared
with non-disabled adults. This was particularly marked for local
trains, the underground, long distance trains and motor vehicles".
204. The Disability
Strategy should set out how the Government intend to take action
on, and measure progress on, disabled people's access to housing,
transport, public space and public services within the context
of the right to independent living.
Hate crime and abuse
205. Public attitudes towards disabled people, and
whether they feel safe in their own homes and in the community,
are an important aspect of independent living. The Government
told us that "Disabled people are more likely to be victims
of crime than non-disabled people at all age groups apart from
those aged over 65".
An inquiry carried out by the Equality and Human Rights Commission
found that harassment of disabled people was 'a serious problem'
which, in some cases, has resulted in serious injury, suicide
or murder. On
6 February 2012 six of the main disabled charities
reported that they are now regularly contacted by disabled people
who say that they have been taunted on the street about supposedly
faking their disability and expressed their concern that this
climate of suspicion could spill over into hate crimes or even
violence. The charities say that one of the contributors to this
climate of suspicion is the repeated allegations by ministers
and civil servants that there is widespread abuse of the disability
206. People First recommended that "Each police
force should have a disability hate crime strategy that brings
in the expertise of disabled people to develop it and support
officers to implement it" and that there should be funding
for independent reporting centres to support people to report
hate crime and to make sure action is taken.
The Essex Coalition of Disabled People echoed this in their lived
experience report on disability hate crime in Essex. They argued
that user-led organisations, such as their own, should work in
partnership with the police and Crown Prosecution Service in order
to promote understanding of hate crime; develop signposting and
support to direct victims to sources of help; educate people;
and increase reporting.
207. The Coalition's Programme for Government included
a commitment to improve the recording of hate crime offences against
disabled people, which are frequently not centrally recorded.
The Government told us that "from April 2011 police forces
are collecting and reporting to the Home Office the number of
offences that are motivated by hostility towards disabled people".
The Government also told us that they were working to empower
disabled people and their organisations to increase reporting
of disability hate crime; developing a national, independent disability
hate crime reporting centre; providing guidance on minimum standards
for such reporting centres; empowering disabled people and their
organisations to set up their own reporting centre; and raising
disabled people's awareness of disability hate crime and incidents
and how to report them.
208. The occurrence
of hate crime against disabled people, and the fear of such crime,
is a growing threat to disabled people's ability to live independently.
We welcome the Government's commitment to reducing hate crime,
and in particular the requirement that police forces collect and
report data on such offences.
209. We remind
the Government of its obligations under Article 8 of the Disabilities
Convention to foster respect for the rights and dignity of persons
with disabilities and to combat stereotypes and prejudices relating
to such people. The Government should take care to ensure that
the justifications it offers for its reforms to the system of
disability benefits does not undermine its other work to promote
positive perceptions and greater social awareness towards persons
Access to redress and justice
210. Breakthrough UK referred to the importance of
"basic legal redress if human rights are denied"
and Independent Living in Scotland told us that "Enforcement
of human rights is also crucial to their implementation yet this
continues to be an issue".
They referred to a survey by Leonard Cheshire which found that
"rights in legislation are simply not translating into reality
for many disabled people".
211. Ill and disabled people make up a 58% of those
affected by removing welfare benefits from legal aid.
Inclusion London argued that the changes to the legal aid system
would mean that disabled people would have no support to challenge
decisions relating to welfare benefits, housing or employment.
In 2009-10 people appealing against Employment and Support Allowance
decisions were twice as likely to succeed if they had representation.
Overall, ill and disabled people make up at least 20% of those
affected by the planned reduction in legal aid services.
212. The Scottish Human Rights Commission submitted
evidence of "an inability of disabled people to access justice
due to, among other factors, difficulties in accessing appropriate
legal representation, and problems accessing legal aid.".
Disabled People Against the Cuts also expressed concerns that
disabled people will find it harder to challenge any abuse of
their human rights and argued that there should be monitoring
of their access to redress.
213. We briefly discussed this issue in our recent
legislative scrutiny Report on the Legal Aid, Sentencing and Punishment
of Offenders Bill,
although we did not consider it in great detail. In that Report
we noted that the impact assessments of the Bill had reportedly
not adequately taken into account the likely effect of its various
provisions on disabled people.
214. The Government
should monitor the extent to which access to redress and justice
for disabled people is affected by the provisions of the Legal
Aid, Sentencing and Punishment of Offenders Bill, and the effect
this has on their right to independent living. The Disability
Strategy should include action to be taken to ensure disabled
people's access to redress and justice.
120 Committee on Economic Social and Cultural Rights,
"General Comment No 3: The Nature of States Parties Obligations",
UN Doc E/1991/23 annex 3 at 86 (1990) para 9 Back
United Nations document E/1992/23, para 11 Back
Joint Committee on Human Rights, 21st Report 2010-12,
Legislative Scrutiny: Welfare Reform Bill, HL Paper 233, HC
Paper 1704 Back
IL 78 Back
IL 62 Back
IL 25 Back
IL 27 Back
IL 34 Back
FACS is a national eligibility framework for allocating social
care fairly. It consists of four bands based on severity of need,
which local authorities use to set their funding thresholds. Back
IL 119 Back
IL 082 Back
IL 85 Back
Q 176 Back
Q 35 Back
Q 58 Back
Q 268 Back
DWP, Personal Independence Payment: assessment thresholds and
consultation, January 2012, http://dwp.gov.uk/consultations/2012/pip.shtml Back
IL 42 Back
Q 8 Back
IL 86. Back
IL 58 Back
DWP, Personal Independence Payment: assessment thresholds and
consultation, January 2012 Back
Q 101 Back
Q 105 Back
The Low Review was an independent review of mobility in state-funded
residential care, commissioned by Mencap and Leonard Cheshire
Disability, and chaired by Lord Low of Dalston. It reported in
October 2011: Independence, Choice and Control-DLA and personal
mobility in state-funded residential care. Back
IL 43 Back
Written Ministerial Statement by Maria Miller MP, Minister for
Disabled People HC Deb, col, 85WS, 13 December 2010 Back
Written Ministerial Statement by Maria Miller MP, Minister for
Disabled People HC Deb. col. 8WS, 5 December 2011 Back
Q 5 Back
Written Ministerial Statement by Maria Miller MP, Minister for
Disabled People HC Deb, col, 85WS, 13 December 2010 Back
Q 10 Back
Q 163 Back
Q 163 Back
Q 188 Back
Q 194 Back
Q 266 Back
IL 41, IL 25, IL 24 Back
IL 78 Back
This proposal was defeated in Committee stage of the Welfare Reform
Bill in the House of Lords on 14 December 2011, on an amendment
proposed by Lord Best. Lord Best's amendment was rejected, along
with other Lords amendments to the Bill, by the House of Commons
on 1 February. At the time of writing, the final outcome is unclear. Back
IL 43 Back
IL 45 Back
IL 47 Back
IL 66 Back
Mental Health Foundation IL 41, Sue Kirkman, IL 8 Back
Q 265.On 14 December 2011 the Government announced a further £30
million increase to this fund: "I am pleased to announce
today an additional £30 million that we will add to the discretionary
housing payment budget from 2013-14", Lord Freud, proceedings
on the Welfare Reform Bill, HL Deb 14 Dec 2011 Col 1302. Back
Q 257 Back
Q 258 Back
IL 80 Back
IL 45 Back
Coping with the Cuts, Demos 2011, p. 116. Back
IL 46 Back
IL 81 Back
QQ 85-86 Back
Q 71 Back
IL 43 Back
IL 80; Burstow Q 268 Back
IL 56 Back
IL 36 Back
Q 78 Back
Q 230 Back
Q 231 Back
IL 67 Back
IL 36 Back
Q 89 Back
Q 88 Back
Q 276 Back
Q 270 Back
IL 41 Back
EHRC 2011, Close to home: An inquiry into older people and
human rights in home care Back
Q 225 Back
IL 80 Back
Q 223 Back
Q 227 Back
IL 81 Back
Procurement of care and support services, Scottish Government
and COSLA, September 2010, http://www.scotland.gov.uk/Publications/2010/09/21100130/0 Back
IL 58 Back
For example IL 76 Back
IL 68 Back
IL 80 Back
IL 87 Back
IL 78.The quotation refers to the preamble to Article 19. Back
Q 256 Back
AKW Medicare Ltd, IL 60 Back
IL 58 Back
IL 86 Back
IL 67 Back
IL 80 Back
IL 80 Back
EHRC, 2011, Hidden in Plain Sight: Inquiry into Disability-related
Scope, Mencap, Leanord Cheshire Disability, the National Autistic
Society, Royal National Institute for the Blind and Disability
IL 26 Back
Disability Hate Crime in Essex and Beyond, May 2011. http://www.ecdp.org.uk/home/2011/5/25/disability-hate-crime-in-essex-and-beyond-a-report-by-ecdp.html Back
Coalition: our programme for government, p.14 Back
IL 80 Back
IL 58 Back
IL 30 Back
Leonard Cheshire Disability, Rights and Reality, 2009,p.7 Back
Reform of Legal Aid in England and Wales: Equality Impact Assessment,
Ministry of Justice, 2011. Back
IL 43 Back
Retaining legal aid for welfare benefits appeals: A briefing
for Report Stage of the Legal Aid, Sentencing and Punishment of
Offenders Bill, Justice for All 2011 Back
Legal Aid Reform: Cumulative Impact, Equality Impact Assessment,
Ministry of Justice November 2010, http://www.justice.gov.uk/downloads/consultations/eia-cum-legal-aid-ref.pdf Back
IL 31 Back
IL 45 Back
Legislative Scrutiny: Legal Aid, Sentencing and Punishment of
Offenders Bill,22nd Report of 2010-12, HL Paper 237
HC Paper 1717 Back