Proposal to replace Disability Living Allowance with Personal Independence Payment

Written evidence submitted by Carers UK (PIP 12)

1. About Carers UK

1.1 Carers UK represents the views and interests of the 6.4 million people in the UK who care for their frail, disabled or ill family member, friend or partner. Carers give so much to society yet as a consequence of caring; they experience ill health, poverty and discrimination. Carers UK seeks to end this injustice and will continue to campaign until the true value of carers’ contribution to society is recognised and carers receive the practical, financial and emotional support they need.

1.2 Carers UK is an organisation of carers, run by carers, for carers. We reach of around 1,500 organisations, including many run by carers, who are in touch with around 950,000 carers. Including Carers Week, our reach extends to around 8,000 groups and 2.5 million carers.

1.3 Carers UK runs an information and advice service and we answer around 16,000 queries from carers and professionals every year. We also provide training to over 2,600 professionals each year. Our website is viewed by nearly 50,000 unique visitors every month and nearly 5,000 carers are registered members of our website forum.

1.4 Carers UK has offices in Wales, Scotland and Northern Ireland. This response reflects the views of the organisation, UK-wide.

2. Summary

2.1 Carers UK accepts that Disability Living Allowance (DLA) is an imperfect and overly complex benefit and that there is a case for reform. However we do not accept the case for cutting the budget for disability benefits and do not believe that it is appropriate or practical to combine wholesale reform with substantial cuts.

2.2 We believe that the proposed £2.17 billion cut to the funding available for Personal Independence Payment (PIP) would put at risk some of the most vulnerable disabled and ill people in society, undermining their dignity and independence.

2.3 In addition, our modelling shows that, as the loss or reduction disability benefits brings knock-on impacts to family incomes, the effect could be disastrous to those already struggling to make ends meet. Despite contributing an estimated £119 billion to the UK with the unpaid care they provide, carers receive the lowest benefit of its kind and are often in a financially precarious situation, facing debt and financial hardship as a result of giving up work to care whilst their families cope with the substantial additional living costs associated with illness and disability. Nearly three quarters of Carer’s Allowance claimants are women, all claimants care for at least 35 hours a week but at least half care for more than 50 hours each week [1] , many will be amongst the 1 million people who have given up work or reduced working hours to care [2] and the two-thirds of carer households where no-one is in paid work [3] . Over 40% of claimants can expect to care for over 5 years, 17% for over 10 years – many of those who give up work to care will do so in their 40s and 50s, and face retirement on reduced pensions and savings; others, who find their caring responsibilities come to an end before retirement, struggle to return to the workplace.

2.4 As a result of this existing vulnerability to financial hardship, Carers UK believes that carers and their families could be particularly hard hit by the proposed reductions in spending on DLA/PIP, and we are deeply disappointed that this has not been adequately assessed. We continue to urge the Government to reconsider these budget cuts, which we believe would push many disabled people and carers further into financial hardship and would ultimately undermine family care.

3. Impact assessment

3.1 Carers UK is surprised and disappointed at the lack of adequate assessment of the impact of the PIP proposals on carers:

· There was no mention of carers in the initial Impact Assessment of the DLA reforms, published with the Bill; or in the Equality Impact Assessments published during the Committee stage. The Government’s response to the DLA reform consultation, published in April, simply states that the Government is considering the implications for Carer’s Allowance of DLA reform.

· This lack of upfront information not only makes adequate scrutiny of the proposals impossible – but it is also causing a huge amount of distress for families, including those affected by the most severe disability and terminal illness, who fear the loss of their disability and carers’ benefits because they do not know if they may be affected.

· Given that 73% of current Carer’s Allowance claimants are women, it is also concerning that the potential loss of independent income for a group predominantly made up of women was not a key part of the gender impact assessment for the Bill.

3.2 We believe that it is critical that a full evaluation of the impact on carers is conducted as a matter of urgency. This must include an estimate of the number of carers expected to lose Carer’s Allowance, a disability impact assessment and a carer equality impact assessment which looks at the impact on gender equality of the likely loss of Carer’s Allowance .

4. The extent to which PIP will act as a gateway to Carers Allowance

4.1 C urrently , eligibility for Carer’s Allowance is established through the middle or hig her rate care components of DLA. Instead of three rates within DLA (lower, middle and higher), PIP will have only two rates; standard and enhanced. The Welfare Reform Bill does not establish how existing groups of DLA claimants will fit into these new categories .

4.2 Whilst the Government has confirmed that PIP will be the gateway to Carer’s Allowance , they have not stated which level of the ‘daily living’ component would lead to eligibility for Carer’s Allowance. We are concerned that , if eligibility were set at only the enhanced rate, substantial numbers of carers could lose entitlement to Carer’s Allowance , without their caring responsibilities having changed.

4.3 Currently 565,000 carers are in receipt of Carer’s Allowance . In response to a Parliamentary Question in May 2011, the Minister for Disabled People stated that data does not exist on the division of Carer’s Allowance claimants caring for the disabled people on a) the middle and b) the higher rate of Disability Living Allowance , and that the costs of the analysis required would be disproportionate [4] . However we believe that it is reasonable to assume that thousands of carers could lose entitlement to Carer’s Allowance if the Government established eligibility only at the enhanced rate of PIP. The impact on families of losing entitlement to Carer’s Allowance is set out in section 5.

4.4 Carers UK is deeply concerned that the Government has not yet come to a decision on eligibility for Carer’s Allowance, particularly given the advanced stage of the legislative process for the Bill. In addition, the response to the Written Parliamentary Question above indicates that the Government may not have conducted an impact assessment of the options.

5. The implications of reduced expenditure

5.1 Carers UK is strongly opposed to the Government’s decision to cut 20% of the funding available for DLA/PIP. Given that the fraud rate for Disability Living Allowance is 0.5% it is clear that a 20% cut would result in the reduction in or removal of disability benefits for large numbers of legitimate claimants – with both direct and indirect consequences for wider family incomes.

5.2 Cuts of this size would compromise the dignity and independence of disabled people and those with long-term conditions who are able to live independently. In addition to clear implications for disability poverty, outlined in detail in the Disability Benefits Consortium response to this inquiry, the cut could only serve to undermine disabled people’s quality of life and the Government’s objectives to promote independent living. It may also ultimately incur additional costs to the Exchequer – as a loss of independence leads to greater demand for higher level disability benefits or care and support services.

5.3 The reduced expenditure would result in serious financial consequences for families. Carers UK research consistently shows most carers are financially worse off as a result of caring:

· 74% were struggling to pay essential utility bills

· Over half were cutting back on food to make ends meet (52%)

· 66% were using their own income to pay for care for the person they cared for

· 54% were in debt as a result of caring [5]

5.4 The resulting loss of independence for disabled people would lead to indirect additional financial pressure on carers. Already, we know that two thirds of carers use their own incomes to pay for care for the people they look after, reductions in incomes from disability benefits would only increase the pressure on carers to dip into their own incomes to pay for support for the people they care for.

5.5 Reductions in income would also reduce disabled people’s capacity to pay for support with transport, aids and adaptions and personal care. Added to estimated £1 billion in cuts to social care services this year, and a similar amount next year [6] - there is a real risk that the combined financial and practical impact on families could be disastrous.

5.6 As set out in the previous section, it is possible that carers will lose Carer’s Allowance as a result of possible changes to eligibility rules . However the scale of the proposed cuts could also lead to substantial numbers of carers losing Carer’s Allowance as the people they care for see their disability benefits reduced or removed.

5.7 The Government has not published estimates of how many disabled people would expect to see their benefit level reduced, or DLA removed entirely, or where the cuts would fall amongst the DLA components and rates. Again, this makes it impossible to effectively assess the impact on carers.

5.8 This lack of information is not only unhelpful as organizations attempt to assess the impact of these measures – but it is also causing a huge amount of worry and distress to families, including those affected by the most severe disability and terminal illness, who fear the loss of their disability and carers’ benefits.

5.9 In the absence of DWP estimates, organizations like Disability Alliance have attempted to estimate the numbers of DLA claimants who would be affected to achieve a 20% reduction in expenditure. Disability Alliance analysis also indicates that, even if all recipients of the lower rate care component lost their benefit (this would not affect any claims for Carer’s Allowance), that the savings announced by Government would require substantial additional cuts to benefits for claimants in receipt of the middle or higher rate care component (where Carer’s Allowance eligibility is established). Disability Alliance estimates that as many as 740,000 disabled people could be affected in total [7] and it is likely that changes to groups currently receiving the middle and higher rate care component, would result in the removal of Carer’s Allowance linked to their claims.

5.10 Carers UK argues that cuts of this scale put at risk some of the most vulnerable families, particularly families in which no-one is able to engage in paid work due to severe disability and caring responsibilities. These families may also be struggling with a lack of access or cuts to good quality and flexible care and support services. The loss of hundreds of pounds a month of income from carers and disability benefits could be devastating for families who are often already struggling to make ends meet.

5.11 Case study: Tony gave up work to care for his wife Laura who is partially blind and has memory problems following a car accident. They have two young children. Laura needs Tony to be there to help her wash, dress and use the toilet and she struggles to prepare food on her own. Tony would love to go back to work but does not want to leave Laura on her own during the day. Tony claims Carer’s Allowance and Laura receives the middle rate care component of Disability Living Allowance. The family is also having the support they receive from care and support services reduced because the local authority has just raised their eligibility criteria to ‘critical’ needs, and Laura has been assessed as having ‘substantial’ needs.

If, following assessment for the new PIP, Laura’s received a reduced amount of disability benefit, which did not allow Tony to qualify for Carer’s Allowance - the family could lose almost £60 a week, over £230 a month, through the reduction in disability benefits, the removal of Carer’s Allowance and Carer Premium. Tony would be forced to claim Jobseeker’s Allowance even though he knows he cannot work because of the care and support his family need and the fact that their social care services are being cut back.

5.12 There is the real risk that the effect of this would be to undermine family care. Nearly nine in ten (87%) working age carers providing round the clock care to disabled partners had no-one in the household in paid work – these families would be the hardest hit by reductions to their financial support from the benefits system, and many would be unable to continue caring. This would force some families to call on local authorities to step in and provide full home care packages or admit the person they care for into residential care, at a potential cost of thousands of pounds a month.

6. Mobility component in residential care

6.1 Carers UK is a signatory to the Mencap report Don’t Limit Mobility which sets out the united opposition of the disability sector to the Government’s plans to remove the mobility component of DLA from individuals in residential care settings. The proposal would trap individuals in their own homes by removing the money they use for transport and mobility vehicles. Mobility component can be key to personal independence to disabled people in residential care, enabling them to engage in social activities, volunteering, work and hobbies outside of their homes.

6.2 Families who use DLA mobility component to fund Motability vehicles could face losing their family cars, which would be particularly difficult for parents of disabled children who attend residential schools.

6.3 Case study: Stephen and Kiranjit care for their disabled daughter Lucy and the family use their Motability car to go out together and her to residential school, which is in a rural area 40 minutes away. As a result of lung damage, Lucy frequently falls ill during term and needs to come home. Without the use of this car the family would struggle to do any of these things, and could not afford the taxi costs of coming to visit Lucy frequently at school. Lucy’s parents feel strongly that she has a right to spent time with her family, particularly her brothers and sisters.

6.4 As outlined in the Mencap report, we strongly refute the Government’s assertion that, in these circumstances, the mobility component amounts to double funding. Particularly at a time of tight local authority spending, it is completely unrealistic to expect social care budgets to be able to absorb the additional expense required to achieve the kind of individualized support that individuals can achieve by choosing how to spend their mobility component.

7. Assessments

7.1 We believe that it is crucial for the new PIP assessments to look at a wide range of evidence , rather than prioritise a ‘snapshot’ face-to-face meeting with a medical generalist, which may fail to gather comprehensive evidence of fluctuating or complex conditions . We endorse the concerns expresses the Disability Benefits Consortium around the proposed assessments, and urge the Government to learn the lessons from the Harrington review and ensure a wide evidence base is built-in to the proposed assessment.

7.2 Those with the most comprehensive picture of the impact of an illness or disability are also likely to be families providing care round the clock. The National Carers Strategy, refreshed by the current Government in November 2010, states that carers must be treated as ‘expert care partners’ by professionals – to reflect their knowledge and expertise in caring for the people they look after. To fulfil these aims, and to ensure that the most comprehensive picture of disability is arrived at, we urge the Government to build carers’ views into the assessment process.

7.3 This is well illustrated by an example from the Aberdeen trials of the Work Capability Assessment, where families have reported a real lack of clarity about their capacity to contribute to the assessment process. Carers UK has heard about a man in his twenties with a learning disability, whose mother’s views were not requested as part of his assessment, and, as a result, his epilepsy was not recorded, because he was not able to describe the symptoms in his interview.

8. The implications of a six month qualifying period

8.1 Proposals in the Bill would extend the qualifying period for the new Personal Independence Payment to six months rather than the existing three months . Carers UK strongly disagrees with this , as the impact on families of having to wait for six months before receiving financial support from both disability and carers’ benefits could substantially increase family debt and financial hardship.

8.2 We know from calls to our Adviceline, that the greatest pressure on family finances often comes in the first months of caring, where a number of factors combine: lost earnings as a result of illness or disability, additional living costs associated with disability, additional travel costs for medical checkups and hospital appointments, a lack of advice and information delaying family’s access to financial and practical support.

8.3 This measure would have the biggest impact on families coping with a sudden, unexpected illness or disability who face the loss of two incomes – though disability and caring responsibilities. For example, a couple in which one individual is disabled following a road traffic accident and the other gives up work to care, would have to wait for six months before receiving PIP or Carer’s Allowance despite losing two full-time salaries. This could leave families in lasting debt and financial hardship if they face long periods on low-level benefits as a result of illness or disability. Carers UK survey work shows that debt and financial hardship are already prevalent amongst families providing care – with 75% struggling to pay basic household bills and over half in debt as a result of caring [8] .

8.4 We strongly urge the Government to reconsider these changes which could push families into long-term debt which they have little capacity to pay off if they face an extended period in receipt of disability and carers’ benefits. Families facing such decisions may make the decision that they are financially unable to take on care, again with knock-on implications for health and social care budgets.

9. Transitional arrangements

9.1 Carers UK agrees with the Disability Benefits Consortium’s view that ‘there are many disabled people who could be transferred to PIP without the need for costly and bureaucratic reassessments. Disabled people with evidenced needs and receiving the highest levels of DLA care and/or mobility, people with long-term, degenerative conditions or impairments evidenced to have high associated costs are examples of people who could have transitional arrangements made to prevent unnecessary expenditure on assessments’.

9.2 If the Government continues to push ahead with plans for substantial cuts in the DLA/PIP budget, in addition to measures to protect disabled people who face reductions in their benefits following reassessment, it is essential that transitional protections will be put in place for carers who lose Carer’s Allowance as a result. If no transitional protections are put in place this could result in significant numbers of caring relationships breaking down, with clear knock-on implications for local authority care and support budgets.

[1] Carer’s Allowance customers’ experiences of caring (2011) Sue Yeandle and Gray Fry, Leeds University

[2] 1 million give up work to care (2009) Carers UK and Ipsos MORI

[3] Facts about Carers (2009) Carers UK

[4] HC Deb 02 May 2011 cc532W-533W

[5] Of 1,734 carers responding to a survey Carers in Crisis (2008) Carers UK

[6] ADASS Budget Survey 2011 (2011) The Association of Directors of Adult Social Services

[7] Disability Alliance estimates that, in order to achieve £1 billion in savings, there would be a risk to the DLA of 643,000

[7] disabled people receiving the lower rate payment of care (£634 million per year) and a further 100,000 disabled people

[7] on the middle or higher rate care components or the higher rate mobility component.

[8] Carers In Crisis (2008) Carers UK

Prepared 16th September 2011