DLA Consultation Response

25% ME Group and Stonebird

Neither Reasonable Nor Fair
Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP), 
on behalf of people with Severe ME


This is a response to the consultation on behalf of people who are severely affected by the neurological disorder myalgic encephalomyelitis (M.E.). It is estimated that 1 in 4 people with M.E. are severely affected. This response has been jointly prepared by the 25% ME Group, a UK charity supporting people with severe M.E., and Stonebird, a web resource aimed at sharing some of the experience of living with severe M.E. All of those involved in drafting this response have direct experience of this disabling disorder, either as a patient or as a carer.

What do we mean by ‘severely affected’? Those who are severely affected have severe restrictions in their mobility and ability to carry out essential daily tasks and attend to personal care.1 There are profound cognitive problems as well as functional disabilities. At its most extreme, people with ME are totally bedbound, in constant pain, unable to tolerate light or noise, and may even suffer paralysis and require to be tube-fed. So this is a response on behalf of people who have a high level of disability.

We believe that it is completely misguided of this Government to replace DLA with PIP under the premise that it is in the best interests of disabled people and society as a whole. The replacement of DLA with PIP, in our opinion, will result in taking cash from vulnerable people who rely on this money to meet additional costs arising from disability, and as such the introduction of PIP is likely to endanger health and exacerbate disability.

PIP repackages prior proposals to ‘reform gateway’ to DLA2 by presenting these under a new ‘brand’, with the concurrent introduction of yet further barriers to qualification, and presented in an ideological wrapper of dubious validity. We note with concern that the changes previously announced were aimed at cutting expenditure by reducing the number of successful claimants, with projected savings of £360 million in the fiscal year 2013-14 and a further £1,075 million in 2014-15. The intention was and remains to make fewer awards of benefit.

We oppose plans that will see disabled people put through a flawed assessment system introduced in order to achieve deliberate and punitive cuts in expenditure, whilst purporting to be in their best interests. We are not convinced that the PIP reflects a serious attempt to understand people’s needs and problems arising from having a disabling disorder.

We note that there is considerable expense associated with implementing these unnecessary reforms. This example of the government's maladaptive thinking on ‘21st century disability’ is a waste of taxpayers money that is highly unlikely to benefit the public purse. Not only will there be a spike in costs associated with implementing a new system, but savings achieved through granting fewer awards of benefit and/or lowering the amounts payable to successful claimants will be offset by the higher costs incurred by carrying out regular assessments and by other public services, including costs uncured in response to deterioration in the health and wellbeing of disabled people through the introduction of these punitive reforms.

The government’s case for ‘The need to reform Disability Living Allowance’ as presented in Chapter 1 of the Consultation Paper is paper thin at best; similarly the arguments that are presented in favour of the PIP proposals in subsequent chapters. Our response incorporates a critique of some of material.
We have reservations regarding the capacity of these Consultation Questions to fairly and thoroughly assess views on the PIP system.
  • Some of the Consultation Questions do not relate well to the government’s plans as set out in the relevant section of the Consultation Paper – so that a person reading the Question in isolation may well fail to appreciate the nature of the change that they are being asked about. Relatedly, some are ambiguous. Some have covert implications and could even lead people to unwittingly argue for the opposite of what they wish to see.
  • Some significant changes are not addressed in the Consultation Questions – perhaps because this consultation is not framed at considering the wisdom of replacing DLA with PIP, but rather at informing ‘secondary legislation on the detailed design, including the new assessment process’. We note with concern that the government has already set up a ‘group of independent specialists in health, social care and disability’ and has consulted with this group prior to the present phase, meaning that primary legislation has been drafted on the basis of a closed consultation. We deplore the lack of a public consultation on the fundamentals of this change.
Notwithstanding that the present consultation is pitched at the details of implementing replacement rather than the fundamental question of whether or not to replace DLA with PIP in the first place, we strongly request that DLA be left in place. DLA in essence is currently meeting the needs of people with ill health and disability. Some aspects of DLA would bear modification, and many people with M.E. – including people who are severely affected - have reported difficulties in accessing benefits to which they are entitled, including DLA. However, there is no compelling case to introduce a completely new system.

As matters stand, neither the consultation process nor the present consultation document represent a reasonable or fair basis upon to which to be making decisions that will have far reaching consequences for people whose lives are adversely impacted by ill health and disability.

Critique of Approach to Reform
This Consultation Question is prefaced by several paragraphs headed ‘Our Approach to Reform’. We preface our responses to the Consultation Questions by presenting a critique of the stated approach. This is not only relevant to Question 1, but underpins many of the other Consultation Questions and this critique lies at the heart of many of the responses we have provided.

If PIP is intended to ‘contribute to the extra costs of overcoming the barriers faced by disabled people to lead full and active lives’ what assistance is to be provided if it is simply not possible for the relevant barriers to be overcome? Against this yardstick, will the most debilitated people qualify for PIP?
  • It is profoundly unhelpful to fail to acknowledge that people who are very ill and very disabled simply cannot live full and active lives in the normal sense. How do you define what is a full and active life in a meaningful way without considering the context of a persons disability including, where this is relevant, the impact of severe illness? You must surely clarify what you mean by ‘full’, ‘active’ and ‘independent’ lives and accommodate the situation of those people who need facilitation within this context.
Any move towards ‘a benefit that helps contribute to the extra costs of living independently’ must take into account the needs of people who simply cannot live physically independently and require assistance to meet basic needs.
  • The concept of ‘independence’ is highly subjective. Independence to someone with Severe ME may be perceived as a tiny irrelevant life, compared to the normal way of interpreting independence.
  • When the consultation paper speaks of ‘independence’ what does it mean? Physical independence? Emotional independence? Mental independence? Does ‘independence’ encompass personhood? Or is it simply intended to imply independence in the sense of living in the normal world doing ordinary practical everyday things?
  • Attaining independence, as an attitude of mind, takes into account the facilitative role of the carer so that an individual who is bed-bound can still have a presence in the world through the hands and feet, ears and eyes, limbs of the carer. The achievement of independence must include this interpretation to be balanced and relevant to all.
The PIP appears focussed on the situation of people who are disabled but otherwise in good health. The consultation document does not address the situation of a sick person.
  • Living with a severe long term illness brings very significant related costs arising from ongoing care and support needs. For those who are tormented by symptoms that are very difficult to bear in themselves and that interfere with everyday functioning - as in Severe ME – any fair system must include the impact of this as a relevant issue in determining financial aid.
  • It is not appropriate that the benefit will continue to take account of the social model of disability’ while completely ignoring the concurrent and very real and relevant implications of the medical model of disability. If the social model is skewed to only look at ability and independence, then it leads to a completely wrong interpretation of the social model. The social model was never intended to negate the very real impact of disease. These models are complimentary and not mutually exclusive in their explanatory insights. The total reliance on the social model in framing government policy represents a facile misinterpretation and is patently unrealistic.
  • It is not legitimate to separate the symptoms and reality of illness from a person and deny their impact. For example, even if suitable physical access arrangements are made this does not yield inclusion, capability, independence and the same freedom to live in the world that a normal able healthy person enjoys.
We are extremely sceptical at the assertion that awards of PIP will be based on ‘fairer, objective assessment’. We can see no evidence to support this. And, while the objective of fair assessment is one that all would share, it is doubtful that these matters can ever be decided on a purely ‘objective’ basis. What, specifically, is implied by ‘objective’ in this context?
We welcome some of the aims of the PIP, such as basing qualification on need not income. However, both this and most of the other aspects outlined here [Para 5] already apply to DLA. Only one objective is clearly new: ‘taking account of the support that disabled people can access to help them live independently’. We are concerned as to what this might imply.
  • Is it possible that, as well as ruling out help for people who experience insurmountable barriers to living independently, PIP will also rule out assistance for people who are able, with support, to minimise or decrease the very real barriers and have already made arrangements to do so - for example, through access to aids and equipment?

Assessment Process
No evidence is presented to back the argument that the existing DLA process “is based on unclear criteria and often does not make the best use of available evidence.” Nor that “As a result, awards can be subjective, inconsistent and do not always focus support on those who need it most.” In so far as this is the case – and DLA decision making has been subject to criticism in terms of failure to grant due awards3 – it is by no means clear the abolition of DLA and replacement with PIP will help surmount such problems. Quite the opposite. And, while there are aspects of the DLA application form that are problematic there has been no serious attempt to address the difficulties when raised with the DWP over the years.
Against this background, it is remarkable to see the DLA application process being slated in order to provide a platform from which to present the ‘need’ for the changes that the government want to see. We have expressed concerns (see above) about the capacity of PIP assessment to meet the stated aims of being ‘fairer’ and ‘objective’. To summarise:
  • We do not believe that it is possible to be completely ‘objective’ in assessing disability.
  • We have serious concerns as to how moves towards ‘objectivity’ will translate in practice for claimants with Severe ME, as the NHS carries out no specialist biomedical testing, hence there is no ‘objective’ record of biomarkers. It is worth emphasising that over 5,000 published research studies, going back to 1934, have demonstrated a range of biomedical abnormalities in a proportion of the patients studied.4
  • As a result of the NHS failure to conduct appropriate specialist testing, all too often the only evidence about how this illness is impacting on ability comes from the patients themselves. Indications are that such accounts hold little weight with assessors, and that this is already a considerable difficulty experienced by people with severe ME in accessing Disability Living Allowance. These PIP changes could well mean that successfully claiming benefit will become even more difficult for people with severe ME.
  • A lot of the disabling symptoms of ME – e.g. noise sensitivity, chemical sensitivity - are not necessarily visible and cannot be objectively measured, even in a snap-shot way.
Similarly, the PIP system might transpire to be ‘easier to understand’ - but that doesn’t necessarily main that it will be fair and rational.

Likewise ‘transparent’: one may be given a clear explanation of why one has or has not qualified, without the criteria employed to reach the decision having been appropriate and fair.

Critique of Case for Change and PIP Approach
This question is prefaced by a short presentation of the government’s case for abandoning the DLA system. This rests on a mixture of patently spurious and more opaque reasoning, including:
  • The definitions currently used are subjective….’ What are these ‘subjective’ definitions? In what sense are they ‘subjective’? In so far as they are ‘subjective’, is this a flaw that could and should be remedied, or an intrinsic reflection of the enormous variety of ways in which different disabling disorders impact on different people’s lives?
  • ‘…and reflect views of disability from the 1990s, not the modern day.’ The notion that the case for change is manifestly apparent through a clear distinction between ‘the 1990s’ and ‘the modern day’ is risible.
  • It is asserted that ‘care’ and ‘mobility’ “do not necessarily remain the best proxies for cost.” This is a fundamental issue in the present context, and some specifics of the ‘conflicting evidence on the factors that affect the extra costs that disabled people face in the 21st century’ and implications of same require to be indicated. On what points does the evidence differ? Also, we note that one of the DWP working papers to which this statement is referenced relates to international evidence on the cost of disability, and suggest that it is specifically the extra cost of disability experienced by people living in the UK that is pertinent to shaping the UK benefits system.
Also problematic is the case repeated mantra of focussing ‘on those who face the greatest challenges to leading an active and independent life’ / ‘individuals whose impairments have the most impact on their lives’ - and similar, throughout the Consultation Paper.
  • What does this imply? The present system operates on the basis that varying levels of DLA award are appropriate, with higher payments awarded to people with greater care and mobility needs. In Chapter 1 of the consultation paper this very feature of DLA is acknowledged - and used as ‘evidence’ of the need for change on the basis that DLA ‘is too complex’.
  • Against this background, we envisage that concurrent moves towards ‘simplification’ and ‘focus on individuals whose impairments have most impact’ implies the removal of benefit from people whose disabilities, while not the greatest, nonetheless bring additional support needs and barriers and have a very real impact on cost of living.

(Please read the full response on Stonebird : www.stonebird.co.uk/DLA Consultation Response.doc)

1 Scottish Good Practice Statement on ME-CFS, The Scottish Government, Edinburgh 2010; available at http://www.show.scot.nhs.uk/GoodPracticeStatementonMECFSforGeneralPractitioners
2 June 2010 Emergency Budget.
3 For example, the Select Committee on Public Accounts Twelfth Report, HMSO, 2004 evaluated statistics on decision making and appeals (presented in a prior report by the Comptroller and Auditor General “Getting it right, putting it right: Improving decision making and appeals in social security benefits”), the poorest performance having been found to occur in benefits requiring the examination of medical evidence, such as DLA. The Select Committee concluded that “Too few decisions are right first time”.
4 See letter to Sir Michael Rawlins from Malcolm Hooper: http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm


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