Welfare Reform Bill

Memorandum submitted by the Motor Neurone Disease Association (WR 56)


1. Motor neurone disease (MND) is a cruel and often rapid disease: its extreme nature must be recognised by the benefits system if that system is to meet the needs of people with MND successfully.

2. In respect of out of work benefits, people with MND of working age should not be obliged to seek work once their illness has obliged them to leave the job they already held (if any) when they fell ill.

3. We support the existence of a non means-tested, tax-free cash benefit to help with costs arising from the disabling effects of MND.

4. We have serious concerns about the proposed new medical test for Personal Independence Payment (PIP) in several respects: its accuracy relative to other evidence; the proposed model of assessing ability rather than the costs to be met by the benefit; the need for anticipatory assessment; and the distorting effects of taking aids and adaptations into account.

5. Claimants of PIP with degenerative illnesses should be able to trigger an urgent reassessment when their condition deteriorates. Once awarded the maximum entitlement, they should be exempted from further reassessments: there is no point reassessing people for whom an improvement in their condition is a medical impossibility.

6. The Special Rules system should be revised so that it is open to people who might reasonably be expected to die within twelve months. The current threshold of six months is particularly unhelpful for people with MND.

7. We oppose any proposal to remove the mobility component of DLA or PIP from people living in local authority-funded residential care. Justifications put forward for this do not hold water.

8. We oppose the proposal to limit contributions-based ESA to twelve months. If the benefits system was operating as we recommend, this would be an academic issue for people with MND; but it is not.

9. We recommend that Housing Benefit should be uprated in line with real rents, not CPI.

10. We are a member of the Disability Benefits Consortium and support their proposed amendments to the Bill.


11. Few conditions are as devastating as motor neurone disease. It is rapidly progressive in the majority of cases, and is always fatal. Patients will, in varying sequences and combinations, lose the ability to speak, swallow and use their limbs; the most common cause of death is respiratory failure. Most commonly the individual will remain mentally alert as they become trapped within a failing body, although some suffer from dementia or cognitive change.

12. The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland, with approximately 90 volunteer led branches and 3,000 volunteers. The MND Association’s vision is of a World Free of MND. Until that time we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.

Principles: how can the benefits system meet the needs of people with MND?

13. In order to meet the needs of people with MND, the benefits system must respond quickly, must be able to recognise the rapid and degenerative nature of MND, and must be able, reliably, to secure the correct entitlement for people with MND at the first time of asking.

14. By taking account of the degenerative nature of MND, a successful benefits system will not oblige people with MND to seek work once their illness has forced them out of the job they occupied (if any) before they became ill. We believe that people with MND should be supported to remain in work for as long as they wish and are able to: beyond this point, we do not accept that they should be obliged to re-train, seek work or undertake any other 'work-related activity'. The degenerative and terminal nature of MND makes any such obligation wholly unsupportable, and beyond this point people with MND of working age should, under current arrangements, be in the support group for Employment and Support Allowance.

15. Currently some people with MND are placed in the Work Related Activity Group (WRAG) and some are even found fit for work, quite wrongly, following the flawed Work Capability Assessment process. Proper recognition of the terminal and degenerative nature of MND must be given in any system: we see this position as in line with the statement made by the parliamentary under-secretary of state for work and pensions, Maria Miller, in her foreword to the proposals to reform DLA, that the Government is, "committed to providing unconditional support to those who are unable to work[.]"

16. Universal Credit (UC) must therefore correct the current faults of ESA. We are concerned, however, that with the entire UC system geared up to return people to work, people with MND are likely to face unacceptable pressure to return to work from officials who do not understand the condition.

17. Beyond income replacement benefits, we believe that a non means-tested, tax-free cash benefit should be available to people with MND to help them with extra costs arising from the disabling effects of their illness. It is positive that the proposed Personal Independence Payment (PIP) maintains these characteristics of Disability Living Allowance (DLA).

Personal Independence Payment: eligibility tests

18. We have serious concerns about the proposed new medical test for PIP, on multiple counts: its accuracy relative to other evidence; the proposed model of assessing ability rather than the costs to be met by the benefit; the need for anticipatory assessment; and the distorting effects of taking aids and adaptations into account.

19. The proposed new medical test for PIP seems likely to repeat the mistakes of the Work Capability Assessment (WCA); it must not be introduced until the problems with this test have been successfully remedied and lessons fully learnt. Face to face examinations by generalists are inevitably less accurate than a rounded assessment of medical evidence supplied by specialist clinicians who know the claimant and understand their condition.

20. We are not convinced that the proposed new assessments will adequately identify the needs of claimants. Disability and illness both decrease people’s earnings and increase their costs, and simple assessments of ability to perform certain tasks do not identify these complex phenomena. [1] The proposals for PIP do not state that any attempt will be made to assess the extra costs that the benefit will meet: clearly, this is the wrong approach and such an assessment must be made.

21. Extra costs incurred by people with MND are many and varied. Here we highlight just a few examples. Heating bills are higher because people with MND cannot move around to keep warm (winter fuel allowance will of course be unavailable to most DLA / PIP claimants as they are of working age); powered wheelchairs and other equipment require extra electricity (and are often paid for using DLA anyway); there is no end to the number of small practical items that might be required, for instance special sheets to make it easier for the person to turn in bed; adapted cars are currently also a major use of DLA. The new test does not appear to be framed to assess any of these things, and is therefore not fit for purpose.

22. Assessment of people with MND for PIP should be anticipatory, and take into account that their condition is likely to change rapidly; simply assessing their status on the day of the assessment will not give an adequate picture of their need. Some account must be taken of medical diagnosis; the Government must therefore revise its current intention to disregard clinical diagnosis in all cases.

23. We do not support the proposal to take aids and adaptations into account: the potential for error and injustice is enormous, and will inevitably be hugely costly for both claimants and the taxpayer.

24. For instance, a person with MND might be assessed before they have a powered wheelchair; when they obtain a powered chair, they would then have to notify DWP of a change to their circumstances. They might then find, as their condition deteriorates, that the chair no longer meets their needs – for instance, they are no longer able to use their hands to control it. They would then have to notify DWP again. It might take several months for the chair to be modified – perhaps fitted with a control they can operate with their mouth – and the person would have to notify DWP yet again.

25. This nightmare will be compounded by the proposal to introduce penalties for claimants failing to notify DWP of a change in their condition: in the context of rapidly degenerative conditions it is plainly unworkable. As a minimum, people with degenerative conditions must be exempted from any penalties (this would again require the Government to reverse its proposal not to take any account of clinical diagnosis); the cleanest policy solution would be to drop both proposals, in respect of both penalties and aids and adaptations, altogether.

PIP: Recommendations for people with degenerative conditions

26. Claimants of PIP should be able to trigger an urgent review of their entitlement when their condition deteriorates, in order to access higher rates of benefit to which they were not previously entitled. People with MND must not be left waiting months – quite possibly months that they do not have – for a reassessment as their condition deteriorates.

27. Anyone with a degenerative disease such as MND should be exempted from further assessments once they are receiving the maximum entitlement; any reassessment would be futile, as it is medically impossible for their condition to improve. The Government’s current intention is to reassess all claimants irrespective of their circumstances – where people with MND whose entitlement is already at maximum are concerned, this is a pure waste of taxpayers’ money.

PIP: Special Rules

28. It is proposed to retain the current Special Rules system for AA and DLA unchanged for PIP. We believe that the Special Rules system for the terminally ill must be reformed: if it is left as it is, many aspects of PIP will mean that people with MND are denied the benefit, or find it much harder and slower to obtain. The Special Rules system is currently inadequate for people with MND, even though they are terminally ill. The threshold of life expectancy that counts as ‘terminally ill’ should be increased from six months to twelve: currently neurologists and GPs are often reluctant to state that a person with MND is expected to die within six months, and therefore the person cannot apply under Special Rules; a twelve month threshold would remove this difficulty in most cases of MND.

29. Without this change to the Special Rules system, the proposals for PIP mean that some people with MND will never receive the benefit despite their great need. This is because of the new qualification threshold of six months, not three as with DLA: that is, the claimant must have had their disability for six months before they can receive any benefit at all. Combined with tougher new tests for eligibility, a person with MND might wait an extra few months before their disability even qualifies them for the benefit (compared to DLA), then die within six months without having received the benefit.

PIP and DLA: Mobility

30. We do not support proposals to remove the mobility component of DLA/PIP from people living in residential care. The DWP's commitment to a further review of this issue is positive, but we believe the case is clear-cut: none of the arguments put forward to support this change bear scrutiny, and the clauses relating to the change should be struck from the Bill.

31. For instance, it is wrong to attempt to justify withdrawing the mobility component from people in residential care on the basis that it aligns their position with that of people in hospital, or in a nursing home and receiving NHS Continuing Healthcare. In both of these latter scenarios, the claimant is receiving medical treatment: centres for medical treatment are not residences. The appropriate comparison is between people in residential homes and their own homes: there is no justification for the mobility component being available in one of these latter situations but not the other.

32. The Government has also attempted to justify this on the grounds that local authorities fund mobility needs and therefore there is a duplication of funding. This has been shown to be untrue. [2] Contracts between local authorities and care homes will include an obligation to cover the individual’s assessed needs, as defined by their social care assessment, but general mobility needs are not covered by these assessments.


33. Eligibility for Carer's Allowance must established through both levels of the PIP ‘daily living’ component, otherwise thousands of carers could lose Carer's Allowance.

Contributions-based ESA

34. We do not support the proposal to limit contributions-based ESA to twelve months. In theory, this should not affect people with MND: the restriction only applies to people in the Work Related Activity Group, which in our view should not include people with MND. Nonetheless, we know that some people with MND are placed in the WRAG.

35. We also note that this change will come into effect very rapidly, in April 2012, and that time spent in the WRAG prior to this will be taken into account. A person with MND who is put in the group from April 2011 and who has not either successfully appealed against the decision or died by April 2012 will therefore be subject to means testing as soon as the change comes into effect.

Housing Benefit

36. We do not support proposals to uprate Housing Benefit in line with CPI rather than real rents. In every year from 1999 to 2009, bar 2009 itself, rent increases exceeded CPI; uprating Housing Benefit with reference to CPI will amount to a substantial cut to Housing Benefit over time for all claimants.

37. The ability to find and pay for suitable accommodation, and to do so quickly, is vital for many people with MND whose homes cannot be adapted to maintain any sort of quality of life as their illness progresses. For many, these changes to Housing Benefit will, if pursued, entirely remove their ability to do so.

Disability Benefits Consortium

38. The MND Association is a member of the Disability Benefits Consortium, and we support both the evidence submitted by the DBC and the amendments to the Bill it proposes.

April 2011

[1] ‘Counting the Cost’, Demos, November 2010

[2] ‘Don’t Limit Mobility’, Mencap et al. November 2010