Written evidence from the Children’s Society (UCR0245)

Written evidence from The Children’s Society on the loss of the Severe Disability Premium under Universal Credit and its impact on disabled single parents and young disabled people moving into independent living

Summary of recommendations

1. The Severe Disability Premium (‘SDP’) needs to be restored within Universal Credit (‘UC’).
2. An alternative approach would be to pay a new 'self-care element' in UC to those who meet the eligibility criteria to have someone receive Carer's Allowance to look after them, but do not.
3. While the 'self-care element' would affect a larger group of claimants, the cost could be offset by paying it at the same rate as the UC carer element (which is paid at a lower rate than the SDP).

Introduction

4. The Children's Society is a national charity that runs local services, helping children and young people when they are at their most vulnerable, and have nowhere left to turn. We also campaign for changes to laws affecting children and young people, to stop the mistakes of the past being repeated in the future. In 2016/17 we worked with over 13,000 vulnerable children and young people in our services.
5. The removal of SDP under UC will have a profound impact on many severely disabled adults.  The Children’s Society is particularly concerned about the loss of the SDP on two groups with which it works – disabled single parents with young carers supporting them, and young disabled people first making the difficult move into independent living.
6. In 2012, The Children’s Society, Citizens Advice and Disability Rights UK coproduced “Holes in the Safety Net” looking at the impact of UC on disabled people and their families. This submission summarises and updates some of those findings.

Who receives the Severe Disability Premium?

7. In addition to the main Employment and Support Allowance (‘ESA’) elements (the personal allowance plus either the work-related activity component or the support component), claimants can also receive two additional disability premiums as part of their ESA entitlement. (These can also be paid in addition to other benefits for those who are eligible for them but not claiming ESA.)
8. The SDP is worth an extra £64 a week. It is paid to severely disabled adults (qualifying for higher levels of support with care needs through Disability Living Allowance (‘DLA’), Personal Independence Payment (‘PIP’) or Attendance Allowance) who do not have a non-disabled person to provide care for them. This means that they live on their own, with another disabled adult, or only with dependent children.
9. The Enhanced Disability Premium (‘EDP’) is worth an extra £16 a week to single person househiolds (£24 to couple households). It is paid to ESA claimants in the support group, and to those receiving the high rate care component of DLA or the enhanced rate of the daily living component of PIP.
10. Example: Tom[1] is 22 and has applied for ESA as a result of a serious illness. During the assessment phase he receives ESA of £58 (the young person’s rate of personal allowance). Following the assessment, Tom is found to be unfit for work-related activity and is placed in the support group. Since he is no longer in the assessment phase, his personal allowance increases to £73. He also receives the support component of ESA worth £38 and EDP of £16. Tom also receives the mid-rate care component of DLA. As he lives alone and doesn’t have a carer looking after him, he is entitled to receive SDP worth £64 per week. This gives him an overall ESA entitlement of £191 per week.
11. The SDP (or similar) has existed for a long time.  Prior to the introduction of the SDP with Income Support in 1988, supplementary benefit had an addition called a ‘domestic help allowance’ which was payable to a severely disabled adult who lived on their own – it was also payable if they had children under 16 in their household or a partner who was also disabled. It was payable even if they had a home help from the local authority if that did not provide sufficient help for their needs. When Income Support came in, the various extra allowances were simplified but the government recognised the ongoing need for severely disabled people on a low income and who lived on their own to receive extra financial support. The SDP was therefore introduced.

Changes under UC

12. Under UC the SDP and the EDP are both being scrapped altogether. This leaves those who would be entitled to the SDP much worse off. However, the equivalent to the support component of ESA - called the ‘Limited Capability for Work and Work-Related Activity’ (‘LCWWRA’) element - is increased in value by around £38 a week, to be worth around £76 in 2018.
13. Notably, while the overall value of UC for a claimant in the equivalent to the support group is typically higher than ESA with the EDP, it is significantly lower if the claimant received the SDP as well.
14. Example: Under UC, Tom (above) receives a standard allowance of £58 plus a LCWWRA component of £76 – a total of £134. This is £57 per week less than he receives through the ESA equivalent (note – this would be £42 if he was 25 or over, since he would receive the over 25 rate of standard allowance under UC).
15. This table summarises the comparison between ESA and UC for someone in the support group receiving EDP and SDP on their ESA (2018 rates, weekly entitlements):

16. The losses are considerably greater for those in the work-related activity group for ESA but receiving the mid-rate care component of DLA. In these cases they lose the SDP, but receive no offsetting additional support through the higher rate support/LCWWRA component under UC. This is explored further in the model example on page 9.
17. The Department for Work & Pensions (‘DWP’) recently announced measures to ensure that during the rollout of UC, severely disabled adults are not left worse off as a result of the loss of the SDP. The Secretary of State stated that: “In order to support the transition for those individuals who live alone with substantial care needs and receive the SDP, we are changing the system so that these claimants will not be moved to UC until they qualify for transitional protection. In addition, we will provide both an on-going payment to claimants who have already lost this premium as a consequence of moving to UC and an additional payment to cover the period since they moved.”
18. This is a welcome measure to ensure that people transitioning on to UC receive protections against a, potentially sharp, reduction in income at the point at which they move across to the new benefit. It also means that those who have already seen a reduction in income as a result of the loss of the SDP will be reimbursed.
19. However, once these claimants have transferred across to UC, whilst one measure was announced to protect the transitional protection of those who work for a short period it is unclear whether there will be any additional measures in place to prevent transitional protections from being lost as a result of other changes in circumstances such as a non dependent moving in briefly then out again.
20. This measure also does nothing to address the long term abolition of the SDP from UC.  This means that many new claimants who have not previously received the SDP will be left considerably worse off, compared to their circumstances if they were still entitled to make a claim for legacy benefits.

Numbers of people at risk of being impacted

21. The DWP recently published an assessment of the numbers of people currently receiving the SDP as part of their ESA entitlement.[2] In total of the 1.7m people receiving income-related ESA, it is reported that 490,000 receive the SDP – 430,000 of whom receive it with the EDP and 60,000 without (the likely difference in impact on these groups is described above):

a)     EDP and SDP – 430,000

b)     SDP only – 60,000

c)     EDP (total) – 1,370,000

d)     SDP (total) – 490,000

e)     Proportion of people on ESA with EDP also receiving SDP – 31%

f)       Proportion of people on ESA with SDP also receiving EDP – 88%

22. It is important to note that the SDP may also be applied to a claimant’s Housing Benefit.  This means that some disabled workers receive support through the SDP. The DWP did not include this in their assessment of claimants receiving support.

The importance of the Severe Disability Premium for disabled single parents with young carers

23. The SDP provides crucial support for families with young carers. The 2012 Holes in the Safety Net survey found that the SDP was used to provide a wide range of care services, including household tasks, personal care, transport costs and social activities. These are described in more detail below.

Household tasks

24. Severely disabled people without a carer could face considerable additional difficulties in completing day to day household tasks. One respondent described how receiving a parcel was a major task, involving: “…collecting post from the shed (postie leaves it if parcels as I cannot get to the door) to opening parcels, recycling the packaging, putting it out in the wheelie, putting the wheelie itself out.”
25. Disabled parents were mainly managing by a mixture of one or more of the following ways: paying for some assistance, receiving some help from their children, or leaving some jobs undone.
26. Survey respondents indicated that young carers in the household were frequently taking on housework which the parent couldn’t complete as a result of their disability – with more than 70% saying their children help them for an hour or more per week with housework as a result of their disability and just under 70% saying they help them for an hour or more per week with shopping as a result of their disability.
27. The percentages of children assisting a disabled parent in specific tasks for more than one hour per week are shown below:[3]

a)     Housework – 74%

b)     Shopping – 68%

c)     Cooking – 70%

d)     Help moving indoors – 62%

e)     Help moving outside – 62%

f)       Personal care – 45%

g)     Gardening – 49%

h)     Other – 71%

28. The percentages of children assisting a disabled parent in specific tasks for more than four hours per week are shown below:

a)     Housework – 14%

b)     Shopping – 3%

c)     Cooking – 9%

d)     Help moving indoors – 14%

e)     Help moving outside – 15%

f)       Personal care – 19%

g)     Gardening – 0%

h)     Other – 14%

29. If these families have their income cut substantially as a result of the loss of the SDP it is clear that there will be even less money available, for example to employ a cleaner for a few hours a week.

Personal care

30. As with housework, many disabled adults incurred additional costs as a result of additional personal care needs: “I have to pay someone to read my post and help me deal with it … I have to pay someone to go to the local walking group called Action for Health so I can take part (and any other social events), I have to pay someone to take me to medical and dental appointments, … I had to pay for a braille dosette box/talking scales/talking jug etc as none of these are considered essential if you live alone, I have to pay someone to go with me to get cash from the building society, … I have to pay for recipes to be recorded, I have to pay for CDs to be labelled, I have to pay for a braille labeller, dictaphone and penfriend device for different information use, I have to pay for a colour detector to try to match clothing, I have to pay for ironing as I kept burning my hands…”
31. Around 19% of disabled parents without a carer responding to the Holes in the Safety Net survey reported that their children provided support with their personal care needs for more than four hours per week.
32. Many disabled parents will already pay for private care services because of inadequate provision from their Local Authority.

Transport costs

33. Respondents to the Holes in the Safety Net survey highlighted the additional costs of transport which they faced as a result of being both disabled, and not having a carer to provide support.  Where someone with a carer may require help from them with travelling, those without a carer may need to make additional payments for travel costs (for example, paying for taxis and paying for car maintenance tasks to be completed):

a)     “When I can’t drive I have to pay others to drive me as I depend on my van to carry my mobility scooter around. I pay to have my van taken to have the tyre pressure checked, the windscreen washer fluid replaced etc, i.e. all the regular maintenance which would normally only take an active person a minute or two.”

b)     “Need someone to drive me £13.50 an hour.”

c)     “Need to pay someone to drive me anything longer than a couple of miles or get a taxi. I am unable to use public transport.”

d)     “When I am too ill to drive I take taxis and therefore also need to pay for these whereas if I lived with a non-disabled partner that person could conceivably drive me.”

34. Disabled parents had extra transport costs connected with essential trips for their children as well as themselves as a result of lacking a carer:

a)     “I pay people to …take my son to nursery…”

b)     “…pay for child minder to collect child to and from school.”

c)     “If I did not have someone to help by driving me about and take my children to and from school. I have to help these people travel to me. These are ongoing costs.”

d)     “Transport to everywhere includes taking children to doctors…”

Social Activities

35. Many people without a full time carer said that going out was so expensive because they had to pay for the time of a carer and all their expenses as well as the extra cost of transport: “I don’t have any social activities - it is just too expensive after paying for a carer to go anywhere with me that is essential. Social activities are not affordable. If I was to have a social life it would cost for 4 hours £30 for an attendant, plus petrol, plus ordinary costs… as I need someone to feed me and hold up a drink I have to pay for someone else in a café or pub or restaurant.”
36. Disabled parents were clearly concerned to try to limit the social exclusion of their children. Some of the witnesses at the evidence session held as part of the Holes in the Safety Net inquiry mentioned their fears that children are unable to socialise due to their role as young carers. One of the witnesses at the evidence session has a 10 year old son who is a young carer for her. Taxis are essential to ensure her son is able to meet with friends, go to social/sport activities and attend a young carers group. She is concerned that if they saw a cut in their benefit support, her son may face greater social isolation.
37. A number of others in the survey also made this point:

a)     “Well the school summer holidays are coming up soon and I am going to have to pay to find people to take my children out throughout it as I can’t keep them cooped up inside for that time it’s not fair on them.”

b)     “I have to pay a lot for my child to do extra activities as I don’t get to do as much as I like with him, so he does things to keep him occupied.”

The impact on young carers

38. As can be seen in the previous section, disabled parents can face a wide range of costs as a result of living without an adult carer.  They face three main choices in addressing these costs: Missing out on the given task or service (not cleaning the house, or less frequently doing the shopping), paying for someone to help (paying for taxis, for a gardener to visit etc), or getting help from their children with the tasks.
39. The government argues that the children should not be doing the caring. However a majority of the severely disabled lone parents (and couples where both are disabled) in our survey were not receiving any help from outside agencies. Of households with children without a disability where no adult is without a disability, only 36% had support from other agencies.
40. It was clear that households with young children were much more likely than disabled people living on their own to have outside help - 65% of households with children under 10 years and no child older than 10 years had outside help.
41. This reflected the extra needs for care of the child(ren) as well as the disabled parent, and was especially true where the children were very young: “[A carer comes in] to ensure that my son is up, dressed, breakfasted, taken and collected from school, fed and put to bed.”
42. However, households with children 10 years or over were much less likely than a single disabled person living on their own to have outside help. Only 27% of households with a dependent child over the age of 10 years had any outside help whereas 37% of disabled adults living on their own had some outside help.
43. It is clear that the assumption being made is that a household with young children need additional support to help look after the children as well as the disabled parent. However if the child is over 10 then the assumption appears to be being made that the household needs less help because the child can act as the carer.
44. The woman described below is a lone parent with two children aged 13 and 14 and is receiving the high rate of the care and mobility component of DLA. Since she has no outside help her children are doing the caring: “… have been fighting adrenal cancer since 2006, diagnosed 2010… I have had two major operations in the last 18 months and three monthly scans and all follow up appointments. I continued work until the beginning of 2009 when I could no longer go on to avoid the benefits system. My husband also left at this point and I was pushed out of my job… Daily I am very slow, constantly feel ill, fatigued, aching, struggle to concentrate, cannot function more than what I consider to be about 10% of pre-illness.”
45. It was clear from the survey that the children were taking on a very significant caring role. 40% of respondents’ children were spending more than 15 hours a week assisting their parents and 60% were spending more than 10 hours a week. This was for all the respondents in the survey who had children of any age. 70% of households with at least one child aged over 10 or over were assisting their disabled parent for more than 10 hours each week.
46. It is already having an impact on the life chances of these children as this mother of a 17 year old boy who is still at school points out: “My local authority no longer provides home care and I need to pay them for personal care… My son cannot cope with school and my needs and care for the home as well - his likelihood of obtaining his highers this year are nil. His whole future has been ruined because of our circumstances.”
47. For households with young carers it is clear that these parents were already feeling distressed that their children are having to take responsibility for so much of the caring and household jobs. The effect of taking £58 out of the household budget of families such as these must mean that children have to do even more. For parents there was also a strong fear that their children would face social exclusion if they had any less income. Preventing this was a key priority for the parents in our survey.

The impact on young disabled adults living independently

48. The Children’s Society are also concerned about young disabled people seeking to move into independent living for the first time.  For this group, additional financial support can be crucial to ensure that they are able to make the, often difficult, move into independent adult life.
49. Worryingly, this group may be affected by a number of reductions in provision under UC. The following model example shows the potential impact of moving onto UC.
50. Example: Luke[4] is a young ESA claimant. He is 23 years old and as a result of severe fatigue and vision problems caused by Multiple Sclerosis, is found to have ‘limited capability for work’. He also receives the daily living component of PIP, as he needs help with his care needs on a regular basis, including help with cooking and cleaning, which he struggles to manage on his own. Since he doesn’t have a carer, under the old system, Luke receives SDP on his ESA entitlement. In total, Luke’s ESA entitlement is comprised of a personal allowance of £73 per week, a work-related activity component of £29 per week (assuming he claimed before April 2017), and SDP of £64.
51. Excepting the additional transitional provisions recently announced by the department, a new claimant for UC, in the same position, would receive a lower personal allowance of £58 (the young person’s rate), no work-related activity component (since this does not exist for new claimants) and no SDP. In total, their UC equivalent to their ESA entitlement is cut by nearly two-thirds – down from £166, to just £58 per week.
52. The following table summarises the comparison between ESA and UC for an under-25-year-old with limited capability for work receiving the SDP on their ESA entitlement (2017 rates, weekly entitlements):[5]  Note that this summarises ESA changes only, the claimant would continue to receive DLA in addition to their UC, and may receive other entitlements (such as help with housing costs, and Council Tax Reduction) as well.

Conclusion and Recommendations

53. While it has been suggested that it would be better for social care services to cover many of the costs associated with the SDP, there has been no additional funding made available in order to ensure that these costs are met. As discussed, only a small proportion of those likely to be affected by the change are receiving a significant level of provision from social care services. It would be surprising if most social care services are aware of this change, let alone ready to provide the significant additional level of support that will be needed in order to address it. 
54. The SDP needs to be restored within UC. The costs of providing additional care to disabled people is understood and addressed through Carer’s Allowance (and the carer’s premium within Income Support and income-based Jobseeker’s Allowance). Similarly, it needs to be understood that there are even greater costs faced by those without a carer, who have to pay for even simple jobs to be completed.
55. The Holes in the Safety Net report proposed that an alternative approach would be to pay a new ‘self-care element’ in UC to those who meet the eligibility criteria to have someone receive Carer’s Allowance or a carer element to look after them, but do not. This would clarify the role of this element as mirroring provision for those who receive help with their care needs through payment of Carer’s Allowance to someone who provides them with support, enabling them to cover equivalent costs in other ways.
56. While the ‘self-care element’ would affect a larger group of claimants (since the eligibility rules for the SDP are restrictive), this could be offset by paying it at the same rate as the carer premium (which is paid at £36 per week - a lower rate than the SDP).

June 2018