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

5 Implementing Article 19—issues 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.[120] 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".[121] 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,[122] 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 impacts",[123] while the Equality and Human Rights Commission said that "the cumulative—even if unintended—effects of DLA reform and cuts in local authority expenditure risk seriously eroding the enjoyment of Article 19 of the Convention".[124]

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.[125] The Choices and Rights Disability Coalition reported fears that people might have to move back with parents or family, or into residential care[126] 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".[127]

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)[128]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:

Critical

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

Substantial

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

Moderate

· 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

Low

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" for services.[129] 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[130] and that the additional funding made available for social care was "more than offset by reductions in overall funding for local government".[131] 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 being met".[132]

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,[133] 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.[134] 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.[135] 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.[136] 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]

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]

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.[139] 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 expenditure",[140]

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".[141] 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"[142]. 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".[143] The Government's most recent assessment of PIP addresses some, but not all, of these issues.[144]

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[145]. 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."[146]

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,[147] 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."[148] 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 eligibility criteria:

a) must not create a disincentive to using aids and adaptations;

b) continue 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

c) should be independently reviewed with the involvement of disabled people's organisations before being rolled out nationally.

146. Significantly 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 Parliament.[149] 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.[150]

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 payment support.[151] 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",[152] 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".[153]

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".[154] 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".[155] The Local Government Association argued that, in general, ring fencing was a barrier to the greater integration of services.[156]

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 people".[157]

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".[158]

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.

HOUSING BENEFIT

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 Integrated Living[159] 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".[160]

154. The College of Occupational Therapists criticised the proposed housing benefit cap, and penalties for those deemed to be under-occupying their property,[161] on the grounds that compelling people to move might reduce access to their support networks.[162] 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".[163] 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.[164]

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[165]; and we heard from one family of how these changes were restricting their daughter's access to housing[166]. These changes are also said to be impacting on the Government's own scheme, Home Ownership for People with Long Term Disabilities (HOLD).[167]

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 to £190m]."[168]

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.[169] 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".[170] 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.[171]

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 adaptations alone.

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 CARE

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[172]. 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".[173]

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 amount."[174]

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.

168. National 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".[175] 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[176] and Diane Mulligan[177] 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.[178]

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.[179]

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".[180]

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.

RESIDENTIAL CARE

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".[181]

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 education—these are all very limited, as is some involvement in both the policy setting and your everyday experience, your everyday care provision".[182]

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".[183] 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."[184]

180. People First on the Isle of Wight raised particular concerns about a lack of funding for advocacy for people in residential care.[185] 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.[186]

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.[187] Doug Paulley described the way means-testing affected his freedom to benefit from paid employment.[188] 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".[189] 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".[190]

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.[191] 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.[192]

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 settings.[193] The 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.

COMMISSIONING

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 own plans.".[194]

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."[195]

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.[196]

192. Human rights have been explicitly written in to commissioning strategy in Scotland, a development which was commended by the Scottish Human Rights Commission.[197] 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".[198]

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".[199]

196. Evidence was submitted to us about the importance of independent sources of information, advice and support to use personal budgets,[200] 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.[201]

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".[202] 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.

199. Access 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 services; and
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."[203] 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'".[204]

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.[205] However, we also received evidence that there has been a significant reduction in the number of housing adaptations funded since 2008.[206]

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".[207] 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".[208] 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".[209]

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".[210]

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".[211] 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.[212] On 6 February 2012 six of the main disabled charities[213] 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 benefits system.

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.[214] 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.[215]

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.[216] 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".[217] 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 with disabilities.

Access to redress and justice

210. Breakthrough UK referred to the importance of "basic legal redress if human rights are denied"[218] 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"[219]. They referred to a survey by Leonard Cheshire which found that "rights in legislation are simply not translating into reality for many disabled people".[220]

211. Ill and disabled people make up a 58% of those affected by removing welfare benefits from legal aid.[221] 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.[222] In 2009-10 people appealing against Employment and Support Allowance decisions were twice as likely to succeed if they had representation.[223] Overall, ill and disabled people make up at least 20% of those affected by the planned reduction in legal aid services.[224]

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.".[225] 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.[226]

213. We briefly discussed this issue in our recent legislative scrutiny Report on the Legal Aid, Sentencing and Punishment of Offenders Bill,[227] 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

121 United Nations document E/1992/23, para 11 Back

122 Joint Committee on Human Rights, 21^st Report 2010-12, Legislative Scrutiny: Welfare Reform Bill, HL Paper 233, HC Paper 1704 Back

123 IL 78 Back

124 IL 62 Back

125 IL 25 Back

126 IL 27 Back

127 IL 34 Back

128 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

129 Q182 Back

130 Q183 Back

131 Q190 Back