Welfare Reform and Work Bill Committee

Written evidence submitted by Parkinson's UK (WRW 64)

About Parkinson's and Parkinson's UK

1. One person in every 500 has Parkinson's , which is about 127,000 people in the UK [1] . While the majority of people develop symptoms after the age of 65, thousands of working age are also affected [2] .

2. Parkinson’s is a progressive, fluctuating neurological disorder, which affects all aspects of daily living including talking, walking, swallowing and writing. People with Parkinson’s often find it hard to move freely. There are also other issues such as tiredness, pain, depression, dementia, hallucinations, and continence problems which can have a huge impact. The severity of symptoms can fluctuate, both from day to day and with rapid changes in functionality during the course of the day, including sudden ‘freezing’. There is no cure.

3. Parkinson’s UK brings people with the condition, their carers and families together via our network of local groups, our website and free confidential helpline. Specialist nurses, our supporters and staff provide information and training on every aspect of Parkinson’s. Our teams work throughout the UK.

4. Parkinson’s UK welcomes this opportunity to present further evidence to the Welfare Reform and Work Bill Committee, following our appearance before the Committee on 10th September 2015.


5. Maintaining at least existing welfare provision for disabled people is vital. The Government’s manifesto commitment to protect the benefits of disabled people was, and is, greatly welcomed and represents an important recognition that a cut for this group would be both financially disastrous and morally wrong.

6. Living with a disability can be extremely expensive. Disabled people spend on average an extra £550 a month on costs directly associated with their disability. One in 10 disabled people spend over £1,000 [3] while 80% of disability-related poverty is caused by extra costs [4] .

7. At the same time, government statistics show that a growing number of households with a disabled member are living in poverty [5] .

8. Yet aspects of the Welfare Reform and Work Bill are contrary to the Government’s promises and will do precisely what it rightly and categorically said it would not do – cut welfare support for disabled people.

9. Our response identifies issues that we believe require further consideration. We also highlight the consequences of some clauses that would harm people with Parkinson’s and disabled people generally. We hope that illuminating these impacts will help the Government realise its right and worthy pledge to protect disabled people and not cut their benefits. We also provide further responses to questions raised in the oral evidence session.

10. This evidence covers our concerns relating to :

· Clause 1: Full employment reporting obligation

· Clauses 7 and 8: Benefit cap and review of the benefit cap

· Clause 9: Freeze of certain social security benefits for four tax years

· Clause 13: Employment and Support Allowance - Work Related Activity component and

· Clauses 16-18: Loans for mortgage interest.

Clause 1: Full employment reporting obligation

11. This clause would place a duty on the Secretary of State to report annually on progress towards full employment. We believe that this helpful proposal could be improved and strengthened by incorporating the Government’s manifesto commitment to halve the disability employment gap.

12. For the clause to be effective the terms will need to be defined and issues relating to disability employment carefully considered. Specifically, how will the gap be tracked, what assumptions will be made about the proportion of people too unwell to work, what is the definition of ‘full employment’ in the context of disability, what are the barriers that still exist for many disabled people who are fit to work and seeking work and what the Government can do to address them?

13. Parkinson’s UK urges the Government to recognise that ‘full employment’ is not achievable, and that there will always be an employment gap of some kind, given the progressive nature of conditions like Parkinson’s, which mean that people will eventually be too unwell to return to work.

14. A Person with Parkinson’s explains: ‘I was one of the unlucky ones who was diagnosed as having Parkinson’s at only 36 years of age. I managed to work for 8 years post diagnosis until I had to medically retire from a professional job that I loved as the disease progressed and I was really struggling.’

15. We hope the Government will amend this clause accordingly and that the Secretary of State when elaborating on the detail of this clause will consider the issues related to the disability employment gap. This is an opportunity that should not be missed to show determination to fulfil a key government manifesto commitment.

Clause 7 Benefit cap

16. The Bill seeks to reduce the benefit cap so that the total amount of out of work benefits a household can claim is £23,000 in London and £20,000 outside London. The clause would also remove the link between the cap and average earnings, and allow the Secretary of State to lower the cap subject to statutory instrument.

17. While we welcome the exemption for families with a disabled member receiving Disability Living Allowance (DLA), Personal Independence Payment (PIP) or the support component of the Employment Support Allowance (ESA), there are disabled people who are not in receipt of these benefits who do rely on a number of other working age benefits such as Jobseeker’s Allowance (JSA), Housing Benefit (HB) and Tax Credits (TCs). Disabled people in the Work Related Activity Group (WRAG) of ESA, for example, will suffer further cuts to household income over the course of this Parliament. Promising to protect disabled people therefore means securing all of the welfare payments made to households where at least one member is disabled, not just those considered to specifically be ‘disability benefits’.

18. Government figures already show the numbers of disabled people living in poverty is growing. The latest Households Below Average Income figures [6] show that the percentage of individuals in absolute low income, in families where at least one member is disabled, increased by two percentage points to 30% after housing costs, between 2012/13 and 2013/14.The figures also show that, ‘with the exception of pensioners, those living in families with a disabled member are more likely to be in low income than those in families without a disabled member’.

19. The Government will exacerbate this growing preponderance of low income in households where at least one member is disabled, unless it amends the clause to exempt these households from the cap.

20. Finally, breaking the link between the cap and average earnings creates a precedent whereby total benefit amounts could be reduced to any level, without the need for justification. This is deeply concerning. People who are eligible for welfare payment and who are too unwell to work should still be properly supported. This measure would jeopardise that, particularly for people with Parkinson’s and in households with a disabled member.

21. We urge that this part of the clause is deleted and the link to earnings remain.

Clause 8 : R eview of benefit cap

22. Parkinson’s UK believes it is insufficient and potentially dangerous to only require the Secretary of State to review the cap once a parliament, effectively now just once every 5 years.

23. This long interval means the Government could fail to identify as quickly as it could if people with Parkinson’s and others with disability will suffer as a result of the cap. The ability of the Government to respond to this suffering as early as possible will then be diminished, or still worse, it could be left too late for some. In terms of the public purse, the cost of making good the situation (where that is possible), will increase the longer an issue is left unaddressed. For example, a person living with a progressive condition like Parkinson’s will deteriorate if living with the stress and anxiety of poverty and without what they need to take control of their condition. The concomitant costs of poorer health outcomes could also be considerable.

24. Parkinson’s UK urges the Government to have an annual review of the impact of the benefits cap so that it can fulfil its responsibility to identify problems in a timely way and put into action an appropriate response.

25. We also support the call for an automatic assessment of the impact on disabled people, carers and their families before the threshold is lowered, and for an assessment to be triggered should the Equality and Human Rights Commission report concerns.

Clause 9: Freeze of certain social security benefits for four tax years

26. We welcome the exemption of people in receipt of DLA and PIP from the four year freeze.

27. Nonetheless, Parkinson's UK is concerned that people with the condition will still suffer a financial detriment because the Bill proposes to freeze a number of other key benefits that many disabled people receive, namely JSA, HB and Universal Credit (UC). In addition, specific benefits focused on supporting disabled people who are too unwell to work, such as the basic rate and work related components of ESA, HB and the limited capability work component of UC would be subject to the freeze. This contradicts the Government’s manifesto commitment which stated: ‘We will freeze working age benefits for two years from April 2016, with exemptions for disability and pensioner benefits – as at present’. [7] The ESA Support Group (which is for ill and disabled people who are too unwell to work) will suffer a real terms cut in their payments as well as people in the WRAG.

28. We would wholeheartedly support an amendment that exempts disabled people and their carers from the freeze.

Clause 13: Employment and Support Allowance (ESA) Work Related Activit y component (WRAG)

29. Clause 13 would mean that future claimants of ESA placed in the WRAG will get the same level of benefit as JSA. The rationale given for this cut to recipients’ support of nearly £30 a week, or over £1,500 a year at 2015/2016 rates, is that it will ‘incentivise’ recipients to get a job.

30. The WRAG is for claimants the DWP identifies through the Work Capability Assessment (WCA) as being capable of work at some time in the future and who are capable of taking steps towards moving into work (work-related activities) immediately. For this reason it is also known as the ‘recovery group’ as they are people the Government identifies as not yet able to work.

31. Further to evidence we presented at the committee on 10th September WRAG is distinct from JSA. It is support for sick and disabled people who are not yet able to work. ESA is a ‘work replacement benefit’ the level of support available represents the replacement for a person’s whole income, or even the entire household income, if a loved one has given up work to provide unpaid care.

32. Taking money from people with Parkinson’s will therefore not cure them or make them better. On the contrary, it risks setting back the recoveries of those in the group who are capable of becoming fit for work, because they may no longer have the means to live healthily and aid their recuperation. Such a measure might have the dual effect of taking people further from their goal of returning to work, and increasing health costs due to worsened health outcomes.

33. These are conditions that will only get worse. They are progressive and debilitating – drugs can help control symptoms to an extent but they do not stop the inexorable progression of the condition . Anyone who has had to give up work due to any one of these conditions cannot simply be expected to return to work in the fullness of time and far from ‘incentivising’ them, taking £30 a week from a vulnerable group could do untold harm.

34. Parkinson’s UK believes that ESA WRAG support should not be cut.

35. We asked people with Parkinson’s to explain how a £30 cut in their ESA payments would impact them:

‘The difference between getting by or living, having the heating on or not, buying quality food as opposed to cheaper junk food being able to get out of the house as opposed to being stuck in and social isolation, which is not good for my mental health’.

‘I would have to reduce the number of therapy sessions which help to keep my condition stable’.

‘This money keeps us out of debt. Ensures I can heat the house, pay my community charge and generally keep my family together.’

36. It is also likely that the cut to WRAG will only exacerbate the problem of disability poverty and cause enormous suffering and anxiety, while exacerbating Parkinson’s symptoms.

The WCA places people with Parkinson’s in the WRAG group incorrectly

37. As mentioned in our oral evidence, we strongly believe that the WCA, which dictates the ESA group into which people are placed, needs to be urgently reformed so that the right people are placed in the right group. Currently, thousands of people are wrongly placed in this group due to the systemic failures in the design of the WCA. Given the progressive nature of the condition, many people with Parkinson’s feel the Support Group is more appropriate, as that there is no possibility of an improvement in their condition, and they are already too unwell to work. Unless there is a significant change future recipients wrongly placed in the WRAG will suffer greatly if the cut is made.

38. The WCA, as it is currently designed, wrongly places people with Parkinson’s in the WRAG because the test fails to capture the reality of living with a fluctuating and progressive condition like Parkinson's.

39. People with fluctuating conditions are those whose symptoms change unpredictably, over the course of a month, week and often during a single day. People with Parkinson’s are therefore at risk of being assessed on a ‘good day’ which means that the assessor is unable to accurately evaluate the impact of a person’s condition on their functional ability. Furthermore, the WCA focuses on someone’s ‘typical day’ , thereby averaging out their best and worst moments, creating a misleading impression of a person’s condition. Taken together, these feature s of the WCA mean that people with Parkinson’s are assessed on a snap shot of their appearance.

40. The WCA also does not register whether a condition is progressive. The fact that Parkinson’s is a condition which will only deteriorate means that people will inevitably reach a point at which it is no longer possible, nor safe, for them to remain in work. As mentioned during our evidence session, a small scale study found that respondents with Parkinson’s worked for an average of 3.4 to 4.9 years after diagnosis, with another study putting mean retirement age at 55.8 years compared to the then UK average of 62 years. The fact that the WCA is not able to understand this important fact of a person’s condition is a significant oversight and leads to systematically incorrect assessment decisions for people with Parkinson’s. [8] [9]

41. The failure of the WCA to fully account for the fluctuating, and progressive nature of Parkinson’s means that thousands of people with this and similar conditions are failing to receive the appropriate level of support. A Freedom of Information request lodged by Parkinson’s UK [10] revealed that a lmost 8,000 people with progressive and incurable conditions such as Parkinson’s, Multiple Sclerosis, Spinal Muscular Atrophy, Cystic Fibrosis and Rheumatoid Arthritis have been put in the WRAG.

42. As stated in our evidence, almost a third of new ESA claims from people with Parkinson’s result in a WRAG award, despit e the fact that the condition is always progressive [11] .

43. One man told us that the WCA assessor asked him,

’How long are you likely to have Parkinson’s then?

44. He was then placed i n the WRAG and only after 6 months was he moved to the more appropriate Support Group. This only happened because his GP intervened; bewildered as to why he was being asked on a weekly basis to confirm that his patient still had an incurable and progressive condition.

45. As a result of these failings, ESA claimants with Parkinson’s are placed in an impossible and demoralising position of being told they are either fit to work or should be getting themselves back into work, and around a third of people with Parkinson’s are placed in the WRAG rather than the much more appropriate Support Group.

46. Given the number of people with Parkinson’s and other progressive conditions put incorrectly in the WRAG, the best way to make sure people get the support they need is to make the assessment work properly, by better understanding fluctuating, progressive conditions. Parkinson’s UK and a number of other charities alongside the DWP undertook a detailed piece of work between May 2012 and December 2013– the Evidence Based Review (EBR), to test the principles of a new WCA (known as the Alternative Assessment) which better accounted for fluctuating conditions, it included –

o Descriptors to account for the impact of pain and fatigue.

o An examination of fluctuation which looks both at severity and how often episodes are a problem.

47. The WCA and AA were tested against a number of ‘expert panels’ – volunteers with healthcare or employment support backgrounds. We recommend that the principles underlying the EBR are used as a starting point for further reform of the WCA.

Clause 13 : Impact a ssessment

48. It is important to note that while there is an assumption inherent in the ‘incentive’ argument that people would rather not work, in our experience work is never given up lightly in order to claim benefits. Far from trying at any opportunity to claim benefits, a problem frequently reported to us is that people try and work for too long and limit what time they have left with their family. Research by the University of Glasgow [12] shows that people often work for several years after a diagnosis of Parkinson’s and people tell us that they wish to work for as long as they are able. This is often because of the uncertain future they face, which for many will mean contributing or fully funding expensive care and support.

49. We are extremely concerned that the Impact Assessment [13] (IA) for this proposal did not mention any of the design failures inherent in the WCA that were even recognised by the Secretary of State during the second reading of the Bill [14] .

50. Given the IA’s failure to model the impact of the cut on people with progressive conditions, it is entirely insufficient that the document suggests that people with progressive conditions can simply be compelled to return to work. It argues that ‘Someone moving into work could, by working around 4-5 hours a week at National Living Wage, recoup the notional loss of the Work-Related Activity component or Limited Capability for Work element’.

51. The IA also makes no mention of the health impacts the cut might have on people in the WRAG and concomitant costs to the health system, including increased Accident and Emergency admissions. Without any of these factors being taken into consideration, we question the reliability of the Government’s expectation of saving £640 million a year by 2020-2021 as a result of the cut. [15]

52. The Government’s ‘incentivising’ rationale simply does not stack u p and the consequences of the policy will be utterly disastrous for people with Parkinson’s in the WRAG , and all the sick and disabled people in re ceipt of the support. We urge the Government not to cut t he WRAG and introduce a presumption of placing people with Parkinson’s in the Support Group (which does not in any way preclude them from returning to the workplace should there be a significant change in their circumstances).

53. For these reasons we support the deletion of this clause.

Clauses 16 – 18 , s ection 16 : L oans for mortgage interest - further provision

54. Changing mortgage interest payment suppor t into a repayable loa n , with admin istration fees and interest also payable, would be devastating for people with Parkinson’s.

55. The Bill leaves it to regulation to make provision about repayments, and we understand from the Bill Team that the plan is for people to pay back the loan at their discretion (i.e. most likely when they return to work), but it actually becomes repayable when the property for which the money was sought, is sold.

56. If a person has had to give up work because of their Parkinson’s, and needs to access a loan to pay their m ortgage interest , it is very unlikely they will be able to return to work to repay the loan early (so minimising the amount of interest they accrue and possibly administration fees they will owe).

57. For people with a progressive and debilitating condition like Parkinson’s, the point at which they are likely to sel l their home is either in order to get a property more suited to their mobility needs, or to release the equity to help pay for care costs.

58. We believe it is wrong that people with Parkin so n’s should be effectively penalised for having the condition which is very likely to preclude them from returning to work.

59. Again the IA [16] for the plans to convert support for mortgage interest (SMI) from a benefit into a loan is deeply flawed. It argues that:

The upward trends in real house prices mean that many owners have accrued significant equity in their homes. The result is that people who are relatively ‘asset rich’ can nonetheless still access financial assistance from the taxpayer in the form of a benefit. Therefore extending support to people who experience temporary periods of unemployment or sickness whilst not increasing the burden to the taxpayer.

No mention is made of the impact on people who will not be able to return to work and in fact, it goes on to say that the policy will act as an incentive for people to return to work in order to minimise the interest on the loan. This completely misses the point that some disabled people are exclu ded from making such a choice.

60. It is also troubling that the examination of the impact on disabled people merely states that:

‘18% of mortgagors have one or more disabilities compared to 19% of the general population’

This provides no evidence of the impact of the policy on vulnerable people with disabilities and long-term conditions. It is of grave concern that the DWP ‘do[es] not have data on the proportion of SMI customers who have a disability’. We do not believe that the impact assessment is a sufficient examination of the potential risks to disabled people without this data.

61. Parkinson’s UK therefore is extremely concerned that the impact on people with progressive conditions has not been taken into consideration within the ‘Key assumptions/sensitivities/risks’. In fact, there are no identified risks whatsoever. There is a danger that these loans will prove difficult to arrange, or impossible to repay for people with progressive conditions. The IA must take account of this risk because as the policy stands, not only are people with Parkinson’s likely to be hit with maximum interest and administration charges when they sell their property, but they will be hit at one of the most difficult time s of their li f e.

62. We strongly believe there needs to be an amendment that stipulates people with progressive and incurable conditions should be exempt from this proposal.

63. Finally, and in summary, given the numerous glaring holes in the IAs and the serious issues we have raised throughout this submission , we urge the Government to undertake a cumulative impact assessment of the Bill on disabled people and people with incurable and progressive conditions so these results can be published as a matter of urgency before any policy can be made law.

Scotland Bill interactions

64. The Welfare Reform and Work Bill is being considered at the same time as the Scotland Bill, which will devolve significant powers relating to disability benefits to the Scottish Government. We view it as unwise to reform the UK-wide elements of the welfare state while simultaneously devolving other elements of welfare reform, given that this is highly likely to lead to unintended consequences and confusion.

65. In particular, we are concerned that the proposals under the Scotland Bill include devolving powers to make concessionary top-up payments to reserved benefits, and powers to vary the timings and eligibility criteria for UC payments. This could lead to significant confusion for people with Parkinson’s as UC rolls out, and incorporates elements of ESA.

66. It is also unclear as to how the devolution of employment schemes for people with disabilities will interrelate with other elements in the Welfare Reform and Work Bill, such as the cut to the WRAG payment from 2017, or on any future reforms of the Work Programme.

67. We therefore recommend that the Welfare Reform and Work Bill’s progress is halted until a cumulative impact assessment of changes to welfare benefits on disabled people since 2010 is undertaken by the UK Government for the whole of the UK.

68. This would help ensure that the UK and devolved administrations, including the Scottish Government, are all informed by evidence, the changes benchmarked, and that the right powers are devolved in order to identify and achieve improvements.

Responses to questions asked in Committee

Question 116 Laura, you mentioned the impact of changes on disabled people and how they had not been taken into full consideration previously. Can you say a bit more about what measurements and reporting you would like to see in the Bill, including knock-on costs if the Government are potentially getting things wrong, if you have recommendations now?

As mentioned in the evidence session, we are concerned that cutting financial support for disabled people represents a ‘false economy’. If people with Parkinson’s and other long-term conditions, who are extremely unwell, experience significant reductions in their level of available financial support, this will simply lead to them falling ill and requiring hospital in-patient stays and social care costs. People with Parkinson’s warn that as a result of the reforms:

‘The cut may lead to people getting less mobile with poorer balance and more prone to injury. This is false economy.’

‘This 30.00 per week is very helpful towards keeping me independent and non-reliant on other care services, although they may well be needed in years to come.’

As a result, we recommend that the Government carefully monitors sources such as the Health and Social Care Information Centre’s Hospital Episode Statistics and Referrals, Assessments and Packages of Care datasets to identify any spikes in the number of avoidable hospital admissions, and social care applications as a result of reductions in the availability of WRAG support.

Furthermore, we also recommend that the Government undertakes a full impact assessment of the impact of the Bill’s provisions on health and social care services.

Q120 I will be brief because I am aware of the time pressures. I just want to talk about the work-related activity group, which contains about half a million people. The Government are allocating extra funds for that-£60 million rising to about £100 million-and I am interested to hear the view on how that money would be best spent.

Parkinson’s UK recommends that additional funding for the Work Related Activity Group would most usefully be spent redesigning the WCA to better account for fluctuating, progressive conditions and introduce descriptors that provide a more realistic proxy of a person’s functional ability. Reforming the WCA along these lines will ensure that people with Parkinson’s and other long-term conditions receive the correct decision first time.

It is noteworthy that 37% of all Fit for Work decisions have been appealed against to date, according to recent DWP figures [17] .

We firmly believe that the introduction of a fair and accurate WCA would create savings in the long-term, by reducing the need for these appeals and mandatory reconsideration of inaccurate benefit decisions.

October 2015

[1] ‘Parkinson’s prevalence in the United Kingdom 2009’

[2] Pringsheim, Tamara, et al. "The prevalence of Parkinson's disease: A systematic review and meta analysis."   Movement Disorders   29.13 (2014): 1583-1590.

[3] E Brawn, Priced Out: Ending the financial penalty of Disability by 2020

[4] A. Sen, The Idea of Justice (Belknap Press, 2009)

[5] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/437246/households-below-average-income-1994-95-to-2013-14.pdf

[6] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/437246/households-below-average-income-1994-95-to-2013-14.pdf

[7] ‘Strong leadership, a clear economic plan, a brighter more secure future – the Conservative Party 2015 manifesto’ p28

[8] Schrag, A and Banks, P (2006) ‘Time of Loss of Employment in Parkinson’s Disease’ in Movement Disorders 21 (11) pp1839-1843

[9] Armstrong, M et al (2014) ‘Which features of Parkinson’s disease predict earlier exit from the workforce?’ in Parkinsonism and Related Disorders, 20, pp1257-1259

[10] Freedom of Information ref: 2014-3129

[11] http://www.theyworkforyou.com/wrans/?id=2014-0901b.206428.h&s=Parkinson%27s+Work+Related+Activity#g206428.q0

[12] What are the key factors which enable people with Parkinson’s to remain in or re-enter employment? P Banks, M Lawrence (University of Glasgow, supported by a Parkinson’s UK research grant, 2003)

[13] Welfare Reform and Work Bill: Impact Assessment to remove the ESA Work-Related Activity Component and the UC Limited Capability for Work Element for new claims, available at: http://www.parliament.uk/documents/impact-assessments/IA15-006B.pdf

[14] Welfare Reform and Work Bill Second Reading, House of Commons Hansard, 20 July 2015, Column 1260

[15] Briefing paper: Welfare Reform and Work Bill, House of Commons Library, Steven Kennedy

[16] Welfare Reform and Work Bill: Impact Assessment for Converting Support for Mortgage Interest (SMI) from a benefit into a Loan, available at: http://www.parliament.uk/documents/impact-assessments/IA15-006D.pdf

[17] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/459095/esa-wca-summary-sep-2015.pdf

Prepared 16th October 2015