the spartacus report: responsible dla reform

8/3/2019 The Spartacus Report: Responsible DLA Reform

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ResponsibleReormA Report on the proposed changes

to Disability Living AllowanceDiary o a Benet Scrounger

Dr S J Campbell BSc (Hons) PhDAnon, ME; Sue Marsh BA (Hons); Kaliya Franklin LLB(Hons);

Declan Ganey; Anon; Mason Dixon, autistic;Leigh James; Sam Barnett-Cormack BSc MSc;

Rhydian Fon-James BSc MSc; Dawn Willis; AnonTis report was entirely written, researched, unded,

and supported by sick and disabled people,their riends and carers.

Tousands more supported it through social media.


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Contents

3 Executive Summary

5 Introduction

6 Methodology6 Te Need or this Document

6 A Misrepresentation o Disabled People

8 Te Consultation Procedure

8 Code o Practice on Consultation

10 Counter-argument to the Governments Response to the DLA/PIP Consultation

10 1. Foreword and Evidence base or Personal Independence Payments Counter-argument

13 2. Is there a DLA Eect that Dis-incentivises Work as claimed by the Government?

15 3. Change o rates and loss o eligibility17 4. Automatic qualication

18 5. Extension o Qualiying Period

19 6. Te Assessment Process:

22 7. Change to Review System

22 8. Emphasis on Aids

25 9. New Change-o-Circumstances System with Possible Sanctions

26 10. Proposal or Compulsory Support

27 11. One-o Costs

27 12. Removal o Mobility Allowance or Care Home Residents

27 13. Streamlining / Removal o Passporting

29 14. Sharing inormation

29 15. Equality Impact and Human Rights

32 Addendum: responses that despite not being requested in the consultation werementioned in signicant numbers

32 A change motivated by cuts (43% responses)

33 Over-65s (14% Responses)

33 Administration Costs (19% responses)

33 Knock-on Eects (16% responses)

34 DLA is Not in Need o otal Reorm (27%)

35 Annexe 1: Te Benet Integrity Project

36 Annexe 2: Mental Health rends and Opportunities

37 Conclusion

38 Reerences


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Executive SummaryTis report is a comprehensive presentation o the most relevant evidence available on Disability Living Al-1lowance (DLA) and the proposals to replace it with a new benet, Personal Independence Payments (PIP).It gathers together existing inormation and analyses over 500 group responses to the Governments Re-sponse to Disability Living Allowance reorm (obtained under FOI request 989).

Te report is entirely written, researched, unded and supported by sick and disabled people, who came2together through social media to share their experiences, skills and talents. It was elt to be vitally importantthat with such sweeping reorm o every kind o support we rely on going through Parliament, there was aneed or a transparent, act-based analysis o available data that had been presented by us.

We argue that reorm must be measured, responsible and transparent, based on available evidence and designed3with disabled people at the very heart o decision-making. Currently, we do not believe this to be the case.

We nd that the Governments response to the DLA consultation presented a highly misleading view o the4responses it received. Overall,

74% o respondents were against the proposals or PIP;

19% had mixed views; and

Only 7% supported it ully.

We nd that the consultation process did not meet the Governments own Code o Practice on consulta-5tion. It was two weeks shorter than recommended and took place over the Christmas holidays. Crucially,the Welare Reorm Bill was presented to Parliament two days beore the consultation ended, meaning thatresponses could not be taken into account when drating legislation or PIP.

We nd that the evidence does not support a 30% rise in DLA claims relevant to PIP as claimed by the Govern-6ment throughout their consultation and Impact Assessments. Te gure is actually 13%. Tese gures were notmade clear to parliamentarians as they debated the bill, despite a Government report being signed o in May2010. Government are still using the 30% gure despite admitting that it gives a distorted view.

We cannot conclude that DLA receipt alone stops sick or disabled people rom working, as claimed by the7Government.

With reerence to the specic questions asked in the Consultation on DLA reorm, we nd that there is8overwhelming opposition to most o the Governments suggestions or reorm. Opposition is so clear inmany cases, that we believe that the Government must pause this reorm until it can be reconsidered.

aking each question, the responses or and against are as ollows :9

Changing rates o care rom 3 to 2 92% Oppose / 8% SupportWe nd this part o the Governments response to be clearly misleading and that it ails to respond to the viewsand concerns o disabled people.

Should automatic qualications to DLA stop? 87% Oppose / 13% SupportWe dispute the Governments interpretation o the data in this section. Te Government response overrides theconsultation.

Should the qualiying period be changed rom 3 months to 6? 98% Oppose / 2% SupportTis is almost unanimously opposed. Te Government ails to take the views o disabled people into account andar rom improving equality law as claimed, may be contravening their human rights.

Introduction o new Assessments 90% Oppose / 10% SupportWe reject the Governments interpretation o the data and ound overwhelming rejection o a WCA-style assess-ment. Tis section provoked the most responses and the highest concern in the entire consultation.

Change to the Review System 92% Oppose / 8% Support

Te Government ails to respond to the suggestions made by disabled people in this section.


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Should any aids a person uses be taken into account? 88% Oppose / 12% SupportTe Government response is misleading and ails to take the concerns o disabled people into account.

New change-o-circumstance system involving sanctions 88% Oppose / 12% SupportTe Government ails to report disagreements or respond to concerns in this section.

Should advice and support be compulsory? 94% Oppose/ 6% SupportWe totally reject the wording o this part o the Governments response. Disabled people are absolutely clear that

this benet should not be condition.Should one-o costs be unded rom DLA 36% Oppose / 64% SupportWe call or clarication on what this question actually means. Te Government ails to address any concerns inthis section.

Removal o Mobility Allowance or care home residents 100% Oppose / 0% SupportTis has now been rescinded.

Should passporting be streamlined or removed rom DLA? 99% Oppose / 1% SupportTis issue had one o the highest responses. Passporting was almost unanimously supported. Te Government ailsto mention that the Independent Living Fund and Severe Disability Premiums will be abolished, unds whichsupport the most prooundly disabled. Tis contradicts Government promises to protect the most vulnerable.

Should more be done to share inormation between departments? 46% Oppose / 54% SupportTe Government ails to mention overwhelming opposition to single assessments or dierent benets. Further-more, we ound evidence that this appears to already be happening beore legislation or PIP has been passed.

We nd overwhelming opposition to an ESA style o Assessment or DLA (Work Capability Assessments).10Te Government presents no evidence that this is the best way orward as they claim and we call on theGovernment to reconsider.

Equality Impact and Human Rights11We nd that :

Te Government assessment ails to note the impact on women

Te Government assessment ails to note the impact o those with mental health conditions

Te Government assessment ails to note that the impact on disabled people will be negative.

We note that disabled peoples rights are protected under

Te Universal Declaration o Human Rights

Te International Covenant on Economic Social and Cultural Rights (ICESCR)

UN Convention on the rights o people with disabilities, Articles 28, 26 & 4 (UNCRPD)

Te Disability Discrimination Act, 1995

Te Equality Act, 2010

Respondents to the consultation repeatedly warn that plans or PIP may be in breach o some or all o these.

Despite not being asked in the consultation, respondents elt strongly enough to mention that this was :12

A change motivated only by cost.

Tere is a lack o clarity over uture plans or children and the over-65s.

It would be prohibitively expensive to implement and administer (675 million).

It would cause greater pressure on social care services and the NHS.

Overwhelmingly, we ound that disabled people do13 notagree that there is a need or an entirely new benet.(PIP). It was clear that whilst disabled people do support some reorm o DLA (they make many suggestionsin this report) they do notwant a new benet. Tey believe it is a costly irrelevance during times o austerity.Disabled people are clear and emphatic keep DLA and reorm the existing benet.


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We nd that much more could be done to address the rise in mental health conditions, which account or a14large part o the rise in DLA claims. We urge the Government to do more to support, treat and understandthese conditions. We believe money spent on introducing an unpopular benet (PIP) would be better spenttrying to alleviate some o the human suering that these conditions cause. I this helps to stem the rise inDLA claims as a result, then the policy will have been doubly successul.

In Conclusion, we remind the government that DLA is already a15 cost-saving benet. Cuts to DLA cannot

cut disability, they simply shit the costs elsewhere. One in three disabled people already live in poverty andmany eel proposals or PIP can only see this increase. We nd the Governments response to the DLAconsultation highly misleading throughout.

IntroductionFor many years, Welare Reorm has not served sick and disabled people well. For this group, above any other,social security is not an abstract term. It is oten, literally, the security to live in society with the same inherentreedoms that anyone might enjoy.

I an illness or disability is so debilitating, so disabling, that you become unable to work, or your barriers to workbecome greater, then it is only this social security that can ensure those reedoms. I you rely entirely on the sup-port o the state and there is little or no chance o that every changing, then it is not just desirable that reorm isair, it is vital. Reorms that do not have a strong base in the needs o disabled people will ail.

Failure however is simply a word. When any welare reorm ails, the human cost can be great. When it aectssick and disabled people who may be unable to provide or their own basic human needs independently it can becatastrophic.

I the evidence at the heart o a policy is not sound, the reorm will not work. I reviews are not rigorous, impactassessments are not comprehensive and consultations take no account o their own ndings, we risk alienating thevery people we need to engage with.

We have seen this very clearly with Employment and Support Allowance. Following his two-year review1, Pro-essor Harrington admits that the eects o his improvements will not lter through or at least three years.Meanwhile, that is three years o chaos, spiralling costs and human suering that will never be undone. I we havelearnt anything anything at all rom ESA it is that we mustget reorm right the rst time. Once a policy is inplace, it is almost impossible to change eectively.

Rushing policy to meet parliamentary schedules can never result in successul reorm. I it is done with genuinemotives the only outcomes considered should be Will this work? Will it improve lives? Will it increase e-ciency? All too oten it eels as though the only question that drives reorm is Will it win votes at the nextelection? Getting a policy right, listening to the people it will aect, considering a wide range o evidence withan open mind these are the key components to successul reorm.

Tere is now a terrible rust Decit between Government and disabled people. We have been subjected to poorreorms, ever tougher sanctions, and an insidious, scrounger rhetoric rom both politicians and the press. Ourinput and opinions have all too oten been ignored when, in act, only sick and disabled people can know exactlyhow disability aects them. A return to a model that takes even more control out o our hands can only ever beregressive.

Tis report aims to give a voice to the millions o sick and disabled people who rely on eective support to liveproductive lives. It aims to present a strong evidence base on which to build eective reorm.

Most importantly, it aims to provide an alternative plan or reorm based on the needs and opinions o sick anddisabled people themselves, a plan they could support and work with Government to implement.


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MethodologyTis report is a comprehensive analysis o the 523 group responses (organisations) submitted to the Gov-ernments consultation on the proposal or Personal Independence Payments. Responses were obtainedunder FOI AC, FOI No. 989, RE: DLA REFORM RESPONSE AS PUBLISHED APRIL 2011,which stated:

With regard to the above document, please can you provide copies o all responses rom organisations men-tioned at Annex 2: List o organisations that responded in ull?2

Groups include national charities, local authorities, legal groups, user led organisations, advocacy groups,healthcare proessionals and businesses.Tis enabled us to analyse the same set o data as the Government when drawing our conclusions.

Unless respondents explicitly expressed an opinion on DLA and PIP, responses were put into 3 categories.

Tose who were totally against,1

Tose with mixed views2

Tose in total support3We dealt specically with questions relating to proposed changes to DLA under the new PIP. Where the Govern-ment have specically asked about a change, we analysed the responses. Where the question is simply asking orsubjective opinions on DLA or more generally inormation gathering, we elt that this was beyond the remit othis report. Inormation on DLA and its uses are well documented elsewhere.

For each particular question, we have looked at the views o those who expressed an opinion on that issue andbroken down their responses into Against/Support. We include the response rates or each issue, to give some in-dication o those which respondents elt the most strongly about.

Figures in brackets give both page and paragraph reerences to Governments Response to the Consultation toDisability Living Allowance reorm. (Reerence A)

It should be noted that responses should not all be given equal weight. One response might be the result o aworkshop involving over 200 people, another, the ocial response rom a charity or disability organisation andanother, a response rom a single individual. Nonetheless the data still gives an overwhelming picture o amass consensus against the changes, which is very dierent to the response to the consultation given by theGovernment.

Te Need or this Document

A Misrepresentation o Disabled People

Many disabled people have strong eelings about the abolishing o DLA and its replacement with PIP. One earoten expressed in the group responses was that this would not be taken into account and their responses to theconsultation would be ignored or worse, misused. An example o this is the response by Pembrokeshire Associa-tion o Voluntary Services as ollows:

Some present at the DSIN meeting were concerned that any comments made within this response may be takenout o context, misinterpreted and used as justication to urther policy aims which are not supportive o disabledpeople and the continuation o DLA. For this reason we would reiterate that the meeting and the organisationsrepresented at the DSIN meeting were clear that they oppose the replacement o DLA with PIP, it is unnecessary,

expensive and inequitable.


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Others elt the need to clariy that replying did not imply agreement to the need or reorm (Partners orInclusion).

Responding to this consultation does not imply an acceptance o the need or PIP by those who have inputtedinto this collective response

Given the Governments interpretation o the consultation in the ace o overwhelmingly negative responses(P3,6), it may be that their ears were justied.

Many responses started by saying they supported the Governments plan or a benet which keeps some o DLAseatures in particular a non-taxable, non means-tested benet. However, it would be disingenuous to take this assupport or a wholesale change o benet. Retaining DLA and modiying it slightly would work just as welland indeed is the preerred option o most respondents.

Another point made was that agreeing that improvement could be made should not be taken as endorsing thechanges proposed. Furthermore, although respondents agreed with the ideals put orward by the consultation,respondents expressed concern that they were not translated into practice. While much store was put into talkingabout a social model and a holistic view o disability, the result was moving towards a rigid, medical model withan apparent points type based assessment ar too similar to the Work Capability Assessment (WCA) which has

been ound unt or purpose by every inquiry into it3

and plagued by appeals.4

Although not mentioned in the consultation, it was largely elt that the driving orce or the reorm was the aimto cut 20% rom expenditure.5 Despite the Government claiming to be working to urther disabled peoples in-dependence, the consultation itsel admits that some disabled people will have support withdrawn as a result. Itis dicult to see how this would enable disabled people. Tis was a concern or 43% o respondents yet wasavoided in the Governments response.

Te conclusion o many respondents was that they were dissatised with the proposal in the current orm butlooked orward to working with the Government. However, a year on, with the welare reorm bill about to bepassed, ew changes have been made and none o the many concerns raised again and again have yet to be rec-ognised let alone addressed. Many others rejected the proposal entirely and only a tiny minority supported the

proposal in its current orm.

Te most recent Impact Assessment (Oct 2011)6 is almost identical to previous versions7 suggesting thatew, i any, o the suggestions made by disabled people and their representative groups have been taken intoconsideration.

Whilst we will go into the detail o each part o the consultation throughout the report, our overall nd-ings are that:

74% o respondents were against the proposals but open to discussion

19% had mixed views, agreeing with parts o the proposal

Only 7% supported them ully.

It is very hard to reconcile these results with the Governments response to the consultation, which assertsthat disabled people are in agreement with and supportive o their plans.


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Te Consultation Procedure

Around a quarter o respondents wished to register complaints and concerns at the way the consultationwas handled. Poorly advertised, the consultation was two weeks shorter than the 12 weeks normally allocated,which was compounded by taking place over the Christmas period. Furthermore the Welare Reorm Bill wasannounced two days beore it ended, thus making it impossible or it to be taken into account when drat-ing legislation.

Evidence suggested diculties in obtaining the material in accessible ormats, something which should have beengiven even greater consideration than usual given the nature o the consultation and its target audience.

When we tried to order copies or our own consultation exercise we encountered a lot o barriers despite over

60 disabled people being in attendance on the day, our reasonable request or multiple copies o the consultationdocumentation was not met. Tere were also major problems with the large print ormat (which was not providedin an adequate ont size).

Tis did not appear to be an open and transparent consultation: we are all relatively well known organisations odisabled people but were not aware o any public consultation events either regionally or nationally that we,or the people we work with, could have attended.9

For the same reason the period given to respond should, i anything, have been longer as a reasonable adjustment.

Others complained that the consultation itsel is misleading. Comments were made or instance about the ail-ure to mention the intention to reduce expenditure on DLA by 20%10 despite raud only being 0.5%11, which is

regarded as one o the prime motives or the changes. Motives or change are cited by the Government regardingthe

Code o Practice on Consultation8

Criterion 1: When to consultFormal consultation should take place at a stage when there is scope to infuence the policy outcome.

Criterion 2: Duration o consultation exercisesConsultations should normally last or at least 12 weeks with consideration given to longer timescales whereeasible and sensible.

Criterion 3: Clarity o scope and impactConsultation documents should be clear about the consultation process, what is being proposed, the scope toinfuence and the expected costs and benets o the proposals.

Criterion 4: Accessibility o consultation exercisesConsultation exercises should be designed to be accessible to, and clearly targeted at, those people the exerciseis intended to reach.

Criterion 5: Te burden o consultationKeeping the burden o consultation to a minimum is essential i consultations are to be eective and i con-sultees buy-in is to be obtained.

Criterion 6: Responsiveness o consultation exercisesConsultation responses should be analysed careully and clear eedback should be provided to participants ol-lowing the consultation.

Criterion 7: Capacity to consultOcials running consultations should seek guidance in how to run an eective consultation exercise andshare what they have learned rom the experience.


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rise in number o claimants,

disincentives to work,

automatic entitlement and

use o aids.

However, many disabled people use their DLA in order to workand respondents noted that it is among the

general public where the misconceptions lie. Tey also pointed out that due to strict DLA regulations, automaticentitlement depends on the eect o the diagnosis, rather than the diagnosis itsel and that DLA already does takeaids into account. Te consultation documents language says otherwise and was deemed to be deliberately mis-leading by many.

A urther complaint was that this was not a consultation document on reorm, but rather a conrmationdocument. It was ound worrying that decisions had been taken beore answers regarding the problems and extracosts aced by disabled people and the useulness o DLA (questions 1,2 and 3 o the consultation) could possiblyhave been taken into account. (P8,4)We have ound evidence that some elements o PIP appear to have al-ready been enacted, though legislation has not yet been passed. (See Q20, Sharing Inormation.) Tere weremany queries over how the Government would act should the consultation reject part o the Governments plans,since the proposals were presented asait accompli.With this in mind there was a big question mark over thepurpose and validity o the consultation exercise.

In an article published by the Law Gazette, Steve Broach writes12:

Whether or not there is a duty to consult, once a public body decides to consult it has to do so properly. Tis es-sential starting point was made clear in R v North and East Devon Health Authority ex parte Coughlan [2001]QB 213 (Coughlan). In other words, whether consultation is a duty or a choice, once launched the standard andquality o the consultation has to be the same.

Even i there is no specic duty to consult on a particular issue, disabled peoples organisations, parents orumsand other local groups may well have a legitimate expectation that there will be consultation about changes toimportant services. Te recent Building Schools or the Future case provides an example o a ailure to consult at

all amounting to an abuse o power; R (Luton BC and others) v Secretary o State or Education [2011] EWHC217 (Admin). Once consultation begins, Coughlan makes clear that our things must be in place to make itlawul:

1) Public bodies must consult in good time so that responses to the consultation can still genuinely be taken intoaccount beore the nal decision is made;

2) Tere must be enough inormation so that people responding to the consultation understand the proposals andcan make an inormed response;

3) Tere must be enough time or responses. Whether enough time has been given will be judged by the court, ithe consultation is challenged, on the acts o the individual case. However, or example, a very short consulta-

tion over a school holiday period in relation to a service used by disabled children is unlikely to be enoughtime;

4) Tere must be genuine consideration o the responses not just lip service paid to them.

I a particular consultation does not match these requirements, any child, adult or amily potentially aected bythe proposed changes can bring an application or judicial review to challenge the consultation. I the court agreesthat the consultation is unlawul then the court will quash it and make the public body consult again and do itproperly the next time.

While some regarded the faws in this particular consultation as simply an appalling ailure on the Governmentspart, others attributed more sinister motives, eeling the exercise was or show only.

Several responses went so ar as to suggest that the Governments proposals may violate disabled peoples humanrights.


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Counter-argument to the Governments Response tothe DLA/PIP ConsultationIn this section we consider the Governments response to the consultation on Disability Living Allowance basedon analysis o over 500 group responses. We will consider the questions specically relating to proposed changes

under PIP. We have divided responses to each question into percentages who Support and those who wereAgainst. We include the response rate as an indication o the strength o eeling expressed over each issue.

1. Foreword and Evidence base or Personal Independence Payments Counter-argument

Tis section is a shorter version o an article by Declan Ganey published on the website LArt Social(http://lartsocial.org). It explores working-age DLA receipt over a 15-year period, rom 1995 up to 2010. Unlike most othe analyses published to date, it attempts to take account o both demographic change and underlying disablingconditions. It shows that DLA receipt or physical conditions stabilised about 10 years ater the introduction othe benet, consistent with a gradual catch-up with the population prevalence o physical impairments, and hasremained remarkably stable since then once demographic actors are taken into account. DLA receipt associated

with mental health and learning diculties however has increased since 2002. In the case o mental health, by arthe biggest driver o working-age caseload increase, this process is not well understood at this stage. However wenote that even with continuous growth in DLA receipt since 1992, just over 1% o the working-age populationis receiving DLA or reasons associated with mental health, a ar lower gure than estimates o the populationprevalence o more severe mental health problems. For physical conditions, there is no growth in DLA receiptbeyond what would be expected in a population that is larger and somewhat older than it was a decade ago. Tereis thereore no basis or the Governments claim, central to its case or reorming DLA, that the complexity andsubjectivity o the benet has led to a wider application than was originally intended.

Why our gures are more relevant and reliable than those used by the government

Te Governments case or abolishing Disability Living Allowance turns crucially on claims about trends in DLAreceipt and expenditure between 2002 and 2010. In its consultation document on abolishing DLA, the Depart-ment or Work and Pensions stated: In just eight years the numbers receiving DLA has [sic] increased by 30%.Te complexity and subjectivity o the benet has led to a wider application than was originally intended. Inevidence to the House o Commons Work and Pensions Committee, Maria Miller stated that DLA expenditurehad increased by 38% betwen 2002 and 2010. Te Department or Work and Pensions representative stated: oadd to what the Minister said, only one third o the growth in DLA in the last eight years can be attributed to whatmight be called demographic actors, the remainder being accounted or by average receipts per head. (Our italics)

We have carried out an analysis o trends in DLA receipt rom 1995, three years ater the benet was introduced,to 2010. We believe the gures we present here are more reliable than those cited by government, because theytake more actors into account in explaining changes in DLA receipt. Tey are also more relevant to the govern-ments case or reorm because they ocus on the groups that will be aected by those reorms rather than on DLAclients in general. Te reasons or undertaking a more detailed analysis are as ollows:

Numbers and ratesa Te Government has generally chosen to highlight gures concerning changes in thenumbers o people receiving DLA. However, these gures are aected by population growth: the popula-tion in 2010 or example is larger than in 2002. Our analysis ocuses also on the rate o DLA receipt, that isthe percentage o people who are receiving DLA. (Te rate is also aected by changes to the population, notin terms o size but o age structure, but we have taken account o this in our analysis see below).

Ageb Te Government has used gures which concern the entire DLA caseload: however, the policies theGovernment is proposing concern only people o working age, so gures or all DLA claims are o littlerelevance. At the same time, as the Government has belatedly acknowledged, gures or the entire caseloadgive a distorted picture (DWPs words) o growth. DLA receipt among people over retirement age has a


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built-in growth actor because virtually nobody who retired prior to the introduction o DLA is entitledto DLA, while since 1992 people who are receiving DLA when they retire have been entitled to keep theiraward into retirement i their circumstances remain the same (rather than applying or Attendance Allow-ance). Tis intended eature o DLA is a major contributor to growth in the caseload. We thereore ocus onDLA receipt among people o working age.

Conditionc While Government has made numerous assertions about growth in the DLA caseload, it has

said nothing about how DLA receipt has changed or dierent types o condition. Yet i the DLA caseloadis increasing, it seems obvious to ask whether this is happening across the board or is growth particularlydriven by specic conditions? We have looked at how rates o working age receipt have changed by broadcondition categories (such as arthritis, heart disease and mental health), something the Government has notchosen to consider, publicly at least (it has published an analysis o change by condition, but not or theworking age caseload, rendering it irrelevant or the reasons noted in (b)).

imeramed Te Governments assertions about growth in the DLA caseload are almost entirely concernedwith the period since 2002. Tere is a good statistical reason or ocusing on this period, as the time seriesgiving the most robust and detailed data on DLA only begins in 2002. However this means ignoring earliertrends, which makes it dicult to contextualise what has happened since 2002. We have thereore con-structed a long-term time series or working-age DLA receipt, taking account o disabling conditions, using

other Government data sources.

Accounting or changee Demographic change has aected the numbers o working-age DLA claims, notjust because the working age population is bigger but because its structure has changed over time. Manydisabling conditions are more common among older age groups, so changes to age structure are likely toaect the numbers on DLA even when we are only concerned with people o working age. We have takenthis into account by analysing DLA receipt by age band (e.g. age 2534) as well as condition. Bringing theage and disabling conditions o DLA clients and demographic change into the analysis allows us to breakchange in the working-age DLA caseload down into two components: changes in the rate o DLA receiptby age and condition on the one hand, and population change on the other. Tis is a much more relevantway o looking at changes in caseload than the crude analysis which government has oered.

Results

Te chart below summarises the long-term development o DLA receipt rom 1995 (just three years ater theintroduction o DLA) to 2010 (the last year or which detailed population estimates are available at time o writ-ing). We have broken the caseload down into three broad categories: mental health, learning diculties and allother conditions, or reasons which are perhaps obvious.


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Overall, the rate o DLA receipt rose rom 3.2 in 1995 to 4.4 in 2002, and then to 5.1 in 2010 (the blue line inthe chart). Tis would seem to support the governments claims that DLA has grown continuously. But when welook at condition categories this picture proves to be quite deceptive. DLA receipt associated with mental healthand learning diculties has increased signicantly since 2002 (the red and purple lines), but there has been verylittle change or other conditions (the green line). In act, the rate o receipt or other conditions has increasedby less than one tenth o a percentage point since 2002. So or what can very loosely be described as physicalconditions there has been virtually no change in DLA receipt since 2002, and all o the identiable growth bycondition is associated with mental health and learning diculties.

A technical point is unavoidable here: this nding is not driven by the way we have combined dierent conditioncategories into the single group all other conditions. We have checked this by calculating rates o receipt or themajor physical conditions identied in the governments data (such as arthritis and heart disease) and the patternis one o minimal or negative change since 2002. (Te exception is the other category in DWPs 5% sample data,which is the only category apart rom mental health and learning diculties to show substantial growth since2002. As this category is made up a set o more detailed condition categories which is not consistent over theperiod, it is unanalysable using the publicly available data.)

In the chart, we have simply shown the rates o receipt or all working-age people, without taking account o how

the population age structure has changed over the period. In act a more detailed analysis by age band strengthensthe conclusion that working age DLA receipt has been remarkably stable or most conditions with the exceptiono mental health and learning diculties. Te results are shown in the table below, which shows how overallchange in the DLA caseload excluding mental health and learning diculties breaks down into rate o receiptand population components, up to 2002 and rom 2002 to 2010.

Period Change due to Number Per cent

19952002 Change in rate o receipt 218,169 74.2

Demographic change 75,926 25.8

otal 294,095 100.0

20022010 Change in rate o receipt -7,670 -6.7

Demographic change 122,231 106.7

otal 114,561 100.0

Tere is a striking contrast between the two periods: between 1995 and 2002, most o the change (74%) is drivenby the rate o receipt, while ater 2002 all o the change is due to demographics both population increase andchanges in age structure. Because we have used more detailed age bands here, we can now see that rates o receiptor physical conditions have actually allen slightly, reducing the caseload by about 7%. So even the very smallrise in receipt shown in the chart (0.1%) proves to be exaggerated.

Commentary

Te contrast between the two periods shown in the table has an obvious explanation which is completely at vari-ance with Governments claims that DLA caseload growth is driven by subjectivity. Te explanation is that DLAwas introduced in 1992 with the aim o expanding the coverage o disability benets. Tis meant that there wasan inevitable catch-up phase when rates o receipt rose quite rapidly or most conditions as the new benet bed-ded down. Te tail end o this process can be seen in the chart, where the increase in the rate or all other condi-tions shows a marked levelling o around 2000. Once the catch-up phase was over, demographic change was themain driver o changes to DLA receipt or physical conditions, as the prevalence o most disabling conditionsdoes not change rapidly unless there is change to population size and age structure. Tere is thereore nothingmysterious or anomalous about recent trends in the DLA caseload or physical conditions.

I Government wishes to argue that subjectivity is a actor in increases in DLA receipt, it needs to explain why

this is only the case or mental health and learning diculties and why this explanation should be seen as moreconvincing than alternatives. In the case o learning diculties, the rise in receipt is very concentrated among


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younger working-age people: the obvious explanation is earlier diagnosis (in childhood) o certain conditions,leading to people carrying DLA awards over into adulthood. For mental health, the question is less about whyreceipt has grown as why it has taken so long to reach its current levels. Even ater 15 years o continuous growth,only one in a hundred working age adults is in receipt o DLA associated with a mental health condition. Tis isar lower than estimates o the population prevalence o more severe mental health conditions rom studies suchas the NHS Adult Psychiatric Morbidity Studyor 2007. By way o example, this study ound that the prevalence ocommon psychiatric disorders with a level o severity high enough to require treatment among people o workingage ranged rom 6.5% to 8.7% according to age. (Tese gures do not include psychosis, the ourth most com-mon detailed condition category or DLA recipients.) Given these estimates, it is hard to see why the current rateo DLA receipt associated with mental health problems should be regarded as anomalous.

Te Government has cited gures or growth in DLA caseload and expenditure as i these counted in themselvesas evidence that the benet is being awarded inappropriately. Tis argument alls apart as soon as the gures aresubjected to routine analysis. I the DLA system were fawed in the way Government asserts, we would expect tosee growth in awards associated with a range o condition categories, not just two. Tis aspect o the Govern-ments case or change is thereore without oundation.

2. Is there a DLA Eect that Dis-incentivises Work as claimed by the Government?In making their argument or reorm o DLA, and in impact assessments o the policy, the Government has mademuch o an apparent eect o DLA receipt on disabled peoples employment; the claim is that disabled people re-ceiving DLA are less likely to start or remain in work, when compared to disabled people not receiving DLA. Teprinciple source or this assertion is a research report commissioned by the DWP and published in 2010, entitledDisability Living Allowance and work: Exploratory research and evidence review20.

Tis report goes into remarkable depth when reviewing existing research on the question. While there are unargu-able statistics showing that disabled people in receipt o DLA are less likely to be in work than those not receivingDLA, the existing research indicates a range o actors that explain some o this dierence. Tese include:

Te act that DLA recipients are statistically more likely, than other disabled people, to suer employment

disadvantages unrelated to their disability (or example by virtue o being older, or emale).

Te act that DLA recipients tend to be more severely aected by disabilities, and more likely to suer romcategories o condition or impairment that create larger employment disadvantage (such as mental healthproblems, locomotor impairments, multiple conditions/impairments).

Tat they are more likely to have been advised not to work, be on a trajectory out o work, or already havestopped working.

wo reports rom 2009 are cited as showing that, ater taking some other variables into account, there is a DLAactor. It is important to note, however, that neither o these studies were looking at actual employment. Instead,it was looking at a claimants own perception o how likely they thought they were to return to work, or whetherthey wanted to return to work. Furthermore, the studies were only looking at Incapacity Benet recipients. Teconsideration o conounding actors is also acknowledged as limited, with

all other likely actors taken into account as ar as possible with the available data (p.37)

Te two studies also reach very dierent conclusions as to the size o the DLA actor; in one, it was ound to bethe smallest contributing actor to a low desire to work, while on the other it was ound to have a greater eecton expectation o working than the extent o sel-reported health condition. Te studies suggest that the moneyreceived rom DLA reduces the nancial incentive to take up paid employment, citing as evidence the act thatthose receiving more money rom DLA are more likely to have low desire or expectation o (re)entering work. Asthe report points out, however:


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It should also be noted that the monetary value o DLA is directly linked to the severity o a health condition,and so, again, this result may reect dierences in the severity o a health condition not captured in the controlvariable. (p.38)

Ultimately, the report concludes that there is evidence or a DLA actor, something specic to DLA that makesrecipients less likely to work. Tey do not state outright that it has been demonstrated, however, as one might ex-pect in the case o strong, directly applicable evidence. Instead they state

our research supports the hypothesis that there is a DLA specic actor that makes it less likely that they willwork (p.105)

I there were strong statistical evidence or this actor, one would expect it to be stated; instead, the report stateslimitations in the pre-existing statistical evidence, and acknowledges the limitations o the qualitative data romtheir own research.

Let us assume, or the sake o argument, that this DLA actor exists. While qualitative evidence is not good orsupporting the existence o such a actor, it can be very useul in explaining it, and that is what the reports au-thors go on to explore. Tey divide the actor into two components: one in terms o perceptions o DLA, and theother in terms o nancial disincentives.

Te question o perception is examined in terms o what people perceive as their justication or claiming, whatthey understand to be the rules or claiming, and what can be deduced rom the timing o the claim. In general, itamounts to:

Te act that DLA is misunderstood to be an out-o-work benetFor a great many DLA claimants, both applicants and recipients, there was a clear perception that DLA is abenet or those who are unable to work, and that it is only payable when someone is not working and stopswhen they go back into work. (p.42)

DLA isnt widely understood at all, so people claim only when it is suggested, and the circumstances inwhich it is suggested are generally associated with leaving work or taking sick leave

While in a job and working (and hence earning) many were either oblivious to the existence o DLA orperceived that they did not need it or indeed that they could not, or should not, claim it. While the precisetiming o DLA applications can be aected by several contingent actors, including hearing about the benetor the rst time, claims oten indicated a response to some orm o crisis that had changed peoples prioritiesand perspectives. People generally claimed at the point when their ability to work became severely aected ortheir nancial situation became untenable. Tis was not always when they rst acquired a health condition ordisability. (p.57)

People eel that they shouldnt claim while they are making enough money to live on, and will even with-draw their claim i they nd work, regardless o their condition.while it is undoubtedly the case that there are people struggling on in jobs despite quite severe disabilities and

health conditions, they are not making claims or DLA, despite their needs (p.46)Te nal question is nancial disincentives, or reduced nancial incentives. People on out-o-work benets receiv-ing certain awards o DLA get increased rates o those other benets. Tis means there is less nancial pressure onthese people to enter work; it should be noted that, in the case o ESA and the remnant on IB, these are peoplewho are acknowledged as not being expected to nd and start work. However, these disincentives are not part oDLA itsel, and it unclear how reorm o DLA could address them; the system o disregards and single taper inUniversal Credit, however, do address those points. Other nancial disincentives mentioned are really aspects operception the act that some believe, incorrectly, that DLA cannot be received while in work, and the act thatit is eared that entering work will trigger a review o the DLA award:

Although employment status is not in itsel relevant to DLA eligibility, there is also something o an acknowl-

edged grey area in terms o what changes o circumstance should be reported, due to the relationship between needsand impairments and the requirements o dierent types o jobs (p.81)


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Te simple act that DLA reviewscan be triggered by inormation about entry into employment which mayleadto withdrawal or reduction o the benet, and the difculty o assessing the true level o risk, lends credence to thereported ears (p.81)

While the Government commitment to better understanding addresses the rst o these, the report makes aspecic recommendation regarding the second, and the Government has made no indication as to its implemen-tation. Tat recommendation is simple: guarantee that entering work will never trigger a review, and that it wont

be used as evidence o lower levels o disability.

Tere is also no indication o supporting other recommendations rom the reports encouraging earlier claims oDLA, while people are still working, and providing specic support to these people to help them stay in work. Inreviewing previous methods o supporting and incentivising disabled people to return to work, the report suggeststhat most measures have supported people to remain in work, but done little to incentivise or hasten a return towork. Te only one mentioned that did was the Return o Work Credit (RWC), part o the Pathways to Workprogram, though it was also reported to have been taken up by those who would have returned to work anyway(p.153).

In essence, it comes down to the question o correlation and causation. By simply asserting the correlation sup-posed by this DLA actor, and stating that the reorms to DLA will reduce it, the implication is that some aspecto DLA itsel is the cause o reduced likelihood o employment. However, researchers o all stripes recognise thatcorrelation does not, in itsel, demonstrate causation. Te causative analysis in the report asks what the causal re-lationship is, and nds that it is principally connected to the design o other benets (hopeully addressed by theintroduction o Universal Credit), and to issues o perception, likely to be solved better by public education. Con-cerns regarding the changes in circumstance that prompt reviews do not appear to be addressed by the proposedreorms, and do not require such wholesale reorm to implement.

As such, it is unclear what the DLA reorms themselves will do to help more disabled people into workand reduce this DLA actor in employment.

3. Change o rates and loss o eligibility

92% Against / 8% Support

61% concerned re eligibility/loss o income

Response rate: 66%

Question 4: Te new benet will have two rates or each component:

a. Will having two rates per component make the benet easier to understand and administer, while ensuringappropriate levels o support?

b. What, i any, disadvantages or problems could having two rates per component cause?

Summary o ndings

Dual concerns were made regarding the change rom three bands o care rate to two, and loss o eligibility orloss o income or disabled people.

Regarding the change rom three bands to two, it was agreed that this would make it easier to administer. Howev-er it was immediately pointed out that this was not an advantage or a step orward or disabled people, but simplyor the DWP.

It was generally contested that it would make it easier to understand as there would still be nine possiblecombinations o benet.

It was completely rejected that having two rates would be better .


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It was elt that it would be impossible to properly refect the wide range o disabilities people experiencewith only two rates. A more graded system is needed. While the three-rate system isnt ideal it is still muchbetter than one with only two. It was thereore elt that the new system would not be airer as the rateswould not better refect the needs o the disabled person.

In combination with the language used elsewhere in the consultation, the emphasis on those with greatestneed, it was widely elt that the eect would be to get rid o the current low rate o DLA care. Tis has sev-

eral signicant eects:

With the squeeze on local budgets a large number o disabled people dont qualiy or any help rom socialservices. Teir low rate DLA is their only orm o support. With this change it was widely agreed that theywould no longer be eligible.

In particular, people with mental health problems would be disproportionally aected by this. Without thissupport, problems currently kept in check would deteriorate to a point where other services would have no choicebut to step in. So there would be a nancial as well as a human cost. It would in act be more cost eective orthese people to keep their low rate benet, quite apart rom the ethical aspect.

For others the issue is simply one o poverty. Although their needs may be considered to be less severe, costs

may still be high. Te high number o disabled people living in poverty conrms this.21

Te loss o even the smallamount aorded by low rate DLA could be devastating.

Another consequence o the two rates will be elt by those who drop a rate. As beore, one consequence will sim-ply be increased poverty, but there could be wider, knock-on eects.

As mentioned previously, DLA is a passport benet. It is unclear how the three rates o benets would mapon to the 2 rates. For example, mid-rate DLA is currently necessary to qualiy or Carers Allowance, disabilitypremiums and increased housing benet or certain groups. I this is taken away i downgraded to lower rate PIP,the eect on individuals and amilies would be devastating. Many highlighted the important role carers play andthe cost this saves social services and the wider community, recently estimated at over 119 billion22. Tus anyloss o carers allowance could have serious repercussions.

Counter-argument to Government Response

Te Government claims that the majority o organisations welcome the move. (P17,18) Tis is clearly not truegiven that 92% o those who expressed an opinion are specically saying they are against this move with only atiny minority expressing their support.

Te Government cites Te National Aids rust to supportits case. (P17,18) Tis is disingenuous. Tis organisa-tion does indeed support the principle o change but has deep reservations about PIP itsel.

NA supports the principle or reorming DLA in order to make the system less conusing but this cost-cuttingapproach to reorm will have the opposite eect or many people living with HIV.

Worse, it specically says it does not support the move to two levels o care.

NA is concerned that moving rom three to two levels o the care/daily living component will adverse-ly afect some people living with HIV who currently claim the lowest rate o care under DLA.

As noted above, the DWP will welcome the move to two rates or ease o administration. (P17,19) However, thisis not seen as an advantage or disabled people and any reorm should be aiming to improve the lives o disabledpeople, not the lives o DWP workers.

In its response (P4, 14,15,18 2123) the Government overrides the objections that the change did not make thebenet easier to understand.

Te consultation response overrides the concerns that two rates cannot refect the wide ranges o diculties

disabilities bring and thereore are not airer.


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It ignores all concerns regarding the removal o the lower rate o DLA, despite the very serious impact itwould have on large numbers o disabled people.

It ignores the knock-on eects this would have on social services and other national services and charities.

It ignores the increase in poverty this move could bring through loss o eligibility and change o band.

It ignores the large worries o loss o important linked benets, in particular carers allowance.

It ignores the concerns o mental health groups over the disproportionate eect this would have on theirusers.

It ignores the act that people with so called lower needs may still ace very large costs rising romdisability.

Tis is despite all o these concerns being raised time and time again by the majority o respondents.

Conclusion: Te Government response is clearly misleading and ails to respond to the views and con-cerns o disabled people in this section. (P4, 14, 15, 18)

4. Automatic qualication

87% against / 13% support

Response Rate 72%

Question 5: Should some health conditions or impairments mean an automatic entitlement to the benet, orshould all claims be based on the needs and circumstances o the individual applying?

Summary o ndings

All agreed that automatic qualication should remain or those dened as terminally ill.

While it was agreed that it is obvious that or most people the award o the benet should be on the merits o theeects o the disability or illness, a large majority elt that the criteria or automatic qualication or a ew selectcases should remain as it is or DLA, with only a minority eeling it should be changed to a case-by-case basis orall.23

Te basis or this was twoold:

One was simply the cost o assessing people who are obviously going to qualiy.

Te other was the stress and discomort or those people having to undergo assessment as well as having todeal with their disability.

Te types o disability or illnesses considered to merit automatic qualication were mostly those which were rap-idly degenerative, such as Duchennes muscular dystrophy, or highly disabling and easy to prove, such as blind/deaness.

Some even elt that the current list o exemptions was too prescriptive and should be reviewed and extend-ed. It was elt much money could be saved this way.


We nd the Government to be quite misleading in this section (P19,20).

We dispute the Governments interpretation o the data (P19,26). Although some organisations did citetheir own impairment as a basis or automatic qualication, many did not but altruistically acknowledged

that other illnesses or disabilities should be entitled to it.


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Te Government reports that the respondents are split on the question (P19,26). A split implies anequal divide. Te division is anything but equal. Te majority were in avour o keeping the system as it isand continuing to assess those who do not qualiy or automatic entitlement based on need.

Te Government makes no mention o the number o respondents who suggest the list o automatic enti-tlements is outdated and should be extended.

We agree that the Government cites the same ndings as we do or keeping the system as it is (P19,28).

Te Government response overrides the consultation and decides to continue with its plans to get rid o all auto-matic entitlements in uture.

Conclusion: Te Government is misleading and ails both to respond or to take the views o disabledpeople into account in this section.

5. Extension o Qualiying Period


Response rate: 25%

Summary o ndings

Te qualiying period is to be changed, allegedly to bring it in line with equality law. However this is opposed byan overwhelming majority and some point out that the proposal is in act harsher than the equality law. Wherethe law says is expected to last 12 months, or PIP it says must last more than six months and be expected tolast a urther six.

Tis change was condemned by many, citing the act that upon becoming disabled most people already experi-ence poverty with a qualiying period o three months, a situation which will only get worse with a waiting periodo six months. Furthermore, i there is any appeal, the total waiting time could be even longer, leaving disabledpeople without income or a prolonged amount o time.

Other concerns noted were that by the time o the application the disabled persons health may have signicantlydeteriorated and their needs may have become urgent. Questions were raised regarding the ability o the DWP torespond quickly enough. Te 3 month qualication period let enough leeway or benets to take eect be-ore crisis point.

Te increase in costs due to the advent o disability can hinder someones ability to continue working. Increasingthe qualication period is only going to worsen this, which goes against the Governments wish to increase thenumber o disabled people in work.

Counter-argument to Government ResponseTe Government admits that only a ew organisations are in avour o this move (P20,33).We would like to em-phasise just how ew, and just how many are against this.

We dispute the claim that the benet will be more in line with the Equality Act 2010 26 (P20,32 P21,34). Aperson diagnosed with, or example, MS or HIV is considered disabled rom the point o diagnosis. Althoughthis does not necessarily render them eligible or benets, they are immediately protected by law and can accessreasonable adjustments in the workplace as well as support such as Access to Work. However this is not the caseor PIP. It was not the case or DLA either, but the extension o the qualication period moves even urther awayrom this denition.


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Te move may be in confict with the United Nation Convention o the Rights o Persons with Disabilities, ar-ticle 26, Habilitation and Rehabilitation24 which obliges the UK to organise such services and programmes tobegin at the earliest stage. Making the stage later would be retrogression.

Te Governments claim that extra costs may be covered by the NHS or local authority (P21,36) ignores thesqueeze on budgets that these services are acing and the current long waiting times beore support can be putinto place. Furthermore PIP is designed to cover the costs incurred on top o the support oered by these organi-

sations and these will be there regardless o whether that support is covered or not. It should be noted that theGovernment itsel does not claim that the costs will denitely be met, only that they may be met.

Te Government is proceeding against the express wishes and concerns o disabled organisations.

Conclusion: Te Government ails to take the views o disabled people into account in this section andar rom improving equality law, may be contravening their human rights.

6. Te Assessment Process:

90% against / 10% support

Response rate: 85%

Question 7: How can we best ensure that the new assessment appropriately takes account o variable and fuctu-ating conditions?

Question 10:What supporting evidence will help provide a clear assessment o ability and who is best placed toprovide this?

Question 11:An important part o the new process is likely to be a ace-to-ace discussion with a healthcareproessional.

a. What benets or diculties might this bring?

b. Are there any circumstances in which it may be inappropriate to require a ace-to-ace meeting with ahealthcare proessional either in an individuals own home or another location?

Summary o ndings

wo main things stood out in group responses:

A change to a mandatory ace-to-ace interview with an independent healthcare proessional; andA

Te removal rom the orm o a statement rom someone who knows you best.B

Te ace-to-ace discussion was the change that brought the most worry to respondents. Te objections to the

ace-to-ace interview were many but can mostly be summarised as ollows:oo short to appropriately appreciate the eects o disability

Lack o specialist assessors

Quality o assessor

Independence o assessor

arget driven assessments

Inappropriate to talk about intimate diculties with a complete stranger

Stressul

Dicult or people with mental health disabilities

Inappropriate or children


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Inappropriate or anyone with communication diculties

Inappropriate or fuctuating conditions

Inappropriate or invisible conditions such as chronic illnesses or mental health

Medicalised view o disability

Only provides a snapshot view

oo subjective

Large cost

Diculties attending an assessment centre (transport, carer to accompany, accessibility)

Te majority o responses specically made mention o the ESA Work Capability Assessment (WCA) withears that this approach would be adopted. Te eelings were that it had ailed and this approach is intrinsicallyfawed. Te system is backlogged with appeals at great cost.25

It was widely elt that to roll out a similar system or DLA or its replacement would be doomed to ailureand a repeat o a mistake with disastrous consequences.

Even the respondents who were in avour o a ace-to-ace assessment called upon the Government to rst under-

take urther consultations in order to learn rom the mistakes o the WCA, and only to use specialists rather thangeneral healthcare proessionals.

Te Mayor is opposed to using independent healthcare proessionals to provide advice on an individuals con-dition. Supporting evidence should only be sought rom healthcare proessionals who are amiliar with theindividual, or example their GP or Consultant. Tey will be amiliar with the claimants case, the barriersthey ace and will be much more aware o their particular circumstances It would be difcult or a healthcareproessional, in a one-o meeting to elicit a comprehensive response about the daily reality or each claimant(Response to consultation rom Mayor o London)

Te second biggest cause or concern in this general section was the removal rom the assessment orm oa box or someone who knows you best. It was elt that the orm had moved too much towards a medicalapproach. It was pointed out that not all disabled people are sick and in requent touch with their GP, nor neces-sarily have hospital consultants. In this case the best person to ask about the eects will be someone else who hasregular contact with the disabled person, and witnesses the eects on their lie.

Tis can be the case even when the disabled person sees their GP regularly. One GP commented that althoughthey may be well versed in the medical condition o their patient, they dont know necessarily know the problemsthey have getting dressed in the morning because they arent there and it isnt something they have asked about intheir regular consultations.

More generally it was elt that the current system worked well, as the person best placed to give inormation aboutthe eects o their disability or illness is the disabled person themselves. Despite any expressed misgivings about

the current orm, sel assessment was generally praised as the best way to nd inormation. Back-up should besought rom the persons GP and consultants i they were in requent medical contact and rom carers or amilymembers as mentioned above i not, but the most emphasis should be given to the inormation provided bythe disabled person themselves.

Finally it was still elt that the proposed system would be extremely poor in identiying and supportingthose people with fuctuating conditions, in particular with the move away rom sel assessment and input rompeople around the disabled person. Suggestions were made many times that a diary over a period o time shouldbe made instead or the cases o long term fuctuating conditions.


Te Government hides the opposition to its proposals in its Executive Summary (P4).


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Te Governments own admission (P4,18) that the assessment is being developed with a group o independ-ent specialists leads us to question the commitment to involving disabled people and organisations overthe reorm o this benet.

We question the Governments claim that Many individuals and organisations welcomed the recognition thatvariable and fuctuating conditions will be refected in the design o the assessment (P24,43).We ound no evi-dence o this. On the contrary respondents expressed serious reservations about the nature o the new assessment,

in particular or fuctuating conditions.

Te Government makes no mention o the valuable contributions made or alternative arrangements or suchconditions including the use o diaries.

Te Government makes no mention o the ailure o the WCA to evaluate these conditions accurately and thehuge risk it would pose to roll out a similar system or PIP.26

We reject the Governments interpretation o the data regarding ace-to-ace assessments and nd this sec-tion highly misleading(P27,54). Only a minority o responses elt that these would be benecial while the resteel the problems by ar outweigh benets (i any). Tis area provoked the most responses and the highest con-cern in the whole consultation.

Te Governments response ails to mention many o the concerns highlighted by the respondents, includingcost, independence o the assessor, the lack o time per appointment, the inevitable, medicalised, tick boxresult o such a system, the subjectivity o the individual assessor, the inappropriateness o such a system orinvisible conditions including chronic illnesses and mental health, the ailure o a similar system to cateror fuctuating conditions.

Although the Government acknowledges that specialist assessor knowledge is a big concern and essential, it makesno commitment to ensure it will be available. It only promises to consider it (P28,59).

Te Government accepts that ace-to-ace assessments may not be appropriate or those with the most severe im-pairments, however it makes no promise to make any exceptions, again, only to consider it.

Although the Government mentions the WCA it does not say how it is going to improve it. Te latest Harringtonreport says that while there has been some progress, it will take at least three years to see i his recommendations areworking. Tis is hardly a glowing success and does not give enough condence to roll out a similar system or PIP(P28,57).

Te only positive concession is the promise to ensure that any assessment will take place in the most appropriatesetting and that any assessment acilities are ully accessible (P29,61). It should be noted that this is not cur-rently the case or the WCA.27

Te Government reuses to take on board the overwhelming response that the best person to give inormationabout their disability is the disabled person themselves. Te new system appears to give equal i not moreweight to the opinion o medical or independent proessionals and none at all to the people around thedisabled person.

Te Government completely ails to mention the concern that the views o the people who either care or thedisabled person or know them well will no longer be taken into account, even though it was an overriding themethroughout the consultation.

Despite all the concerns raised against a ace-to-ace consultation, the Government overrules them and persists insaying it believes it is the best way orward without any strong objective evidence (P28,59).

Conclusion: Te Government is both misleading and ails to respond to the concerns o disabled peoplein this section.


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7. Change to Review System


Response Rate 72%

Question 12: How should the reviews be carried out? For example:

What evidence and/or criteria should be used to set the requency o reviews?

Should there be dierent types o review depending on the needs o the individual and their impairment/condition?

Summary o ndings

Te change to the review system was elt to be unnecessary. Many elt that the consultation document and re-cent media claims28 had been disingenuous in the way it had approached this question.

It was elt that some conditions, those which were permanent or progressive, should still have indeniteawards with the option or the claimant themselves to ask or a reassessment i they wished.

For others the requency o reviews should be based on need and not be the same or all. Tis was elt to be a

waste o time and money as well as a source o unnecessary stress.Furthermore it was elt that reviews should be dierent to new claims. Requests were made that or conditionsunlikely to change a simple change o circumstances orm could be signed either by the claimant or their doctor.It should be unnecessary to submit a brand new claim each time.

It was elt that the new system would be ar too costly and ears were expressed that this money would come outo that available to give as benets or disabled people.

Mention was made o the Benet Integrity Project(see Annexe 1) with warnings not to repeat the samemistake.

Counter-argument to Government ResponseTe Government overrides the overwhelming responses o this part o the consultation.

Although it makes a point about the cost o some overpayments (P32,70), it ignores the points made about thecost o regular reviews or people or whom it is obvious the condition is never going to change.When osetagainst the cost o underpayments (P32,70) we strongly question whether there is a nancial or a politicalmotive to this change.

Te Government pays no attention to the considerable number o suggestions or improving the current methodso review so that possible changes o circumstances might be better reported. Te Government reuses to respondto the suggestions o simpler and easier reviews which would both lessen the stress or the disabled person and thecost o the review.

It ails to mention the Benet Integrity Project completely.

Conclusion: Te Government ails to respond to the concerns and suggestions o disabled people in thissection.

8. Emphasis on Aids


Response rate: 68%


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Question 8: Should the assessment o a disabled persons ability take into account any aids and adaptations theyuse?

a. What aids and adaptations should be included?

b. Should the assessment only take into account aids and adaptations where the person already has them, orshould we consider those that the person might be eligible or and can easily obtain?

Summary o ndings

It was almost unanimously elt the Government has an overly optimistic view o lie or disabled people inthe United Kingdom today. Some were so keen to help the Government understand that their responses simplygave many examples o the problems disabled people still ace rather than answer the specic questions o theconsultation.

When asked about the problems aced and the costs rising rom disability in questions 1,2 and 3, the overwhelm-ing response was transport. Despite the DDA29 and Equality 201030, many buildings remain inaccessible andmost public transport, especially in rural areas, is similarly inaccessible or unreliable. Most must still rely on taxisor their cars.

Many must buy adaptations or improvements to their mobility aids. Others cite maintenance and insurance asurther costs. Furthermore the aids dont work all o the time or in all circumstances. Hills, bad weather, pain, orsimply broken equipment all present problems.

Tus even with aids such as a wheelchair, mobility is still greatly restricted and mobility costs still muchgreater than non disabled people. It is a source o great concern that people who can use a manual wheel-chair on a fat surace may be deemed completely mobile.31

Other types o aids are also prohibitively expensive, especially communication aids, be it visual or audio. Tese arenot routinely provided.

Some dea groups were earul o being orced to use aids such as cochlear implants or being reused benets.

Many were also earul that they would be orced to use aids which were inappropriate and benets may betaken away i they reused to use them.

It was noted that taking aids into consideration to the extent which is proposed or PIP is at odds with the DDAdenition o disability.32

Te Disability Discrimination Act (DDA) denes a disabled person as someone who has a physical or mentalimpairment that has a substantial and long-term adverse eect on his or her ability to carry out normal day-to-day activities.

It was commented that contrary to what was implied by the consultation document, aids are already taken intoconsideration in an application or DLA and there is no valid reason or the system to change.

Te only other overriding comment was a plea or the DDA and Equality 2010 to be enorced.


We agree with the Governments ndings that there are ongoing costs associated with aids that have already beenpurchased.

We concur with the Governments statement that some aids are already taken into account under DLA wherethey enable the disabled person to carry out activities under daily lie (P25,49). We note however that this wasnot made clear in the consultation documents.

We agree with the Governments ndings that some organisations agree with the proposals to take greater accounto aids. (P25,48) We agree that these tend to be health and medical proessional organisations. We submit that


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9. New Change-o-Circumstances System with Possible Sanctions


Response rate: 46%

Question 13: Te system or Personal Independence Payment will be easier or individuals to understand, so weexpect people to be able to identiy and report changes in their needs. However, we know that some people do

not currently keep the Department inormed. How can we encourage people to report changes in circumstances?

Summary of ndings

Tis was widely discredited and it was disputed that PIP would be any easier to understand than DLA.

Te low raud rate o just 0.5% or DLA was pointed to and it was elt that this initiative was pandering to recentmedia activity.33

Reminders were made o the Benet Integrity Project which, rather than nding people were over claiming,ound that people were under claiming.

Tere was great concern among mental health and age concern groups about this proposal. People with some

types o mental health problems or some types o senility can nd it very dicult to report changes in circum-stances at the time they happen and should not be unduly punished or it.

It was instead elt that the onus should be more on the DWP to make it easier to report a change in circumstanceand to make any change aster.

It was commented that currently the DWP does not actually say what changes one must report and it would be un-reasonable to set up new punitive rules until every claimant is sent out a list o changes which have to be reported.

It was widely elt that the current system is enough and a punitive system or disabled people is totallyinappropriate.

A number o suggestions or improvement were made which could be implemented by the DWP. Tis in-

cluded sending out a list o changes o circumstances which must be reported with the PIP award, a change ocircumstances orm to be signed yearly, or a conrmation rom the GP that circumstance had not changed .


We agree with the Government ndings that a list o changes o circumstances should be given to all individualsand that annual reminders would be helpul (P38, 78, 79).

Te Government ails to say that respondents disagree that PIP will necessarily be easier to understand. In act itactively contradicts the consistent reports rom the consultation that PIP is not easier to understand.

Te Government ails to report the concerns among mental health and age concern groups and the clear disad-vantage that these claimants would ace with these proposals.

Te Government ails to report that respondents eel that this proposal is targeting vulnerable people on a alseassumption o raud and is a response to recent media stories.

Te Government ails to report that respondents eel the current system does not need change other than perhapsthe improvements suggested to be undertaken by the DWP.

Te Government makes no clear commitment to ollow up on these specic improvements.

Te Government reiterates its intention to ollow through with a punitive system which will disproportionally a-ect people with mental health disabilities, people with learning diculties and older people (P34, 82).

Conclusion: Te Government ails to report disagreements and ails to respond to concerns in this

section.


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10. Proposal or Compulsory Support


Response rate: 41%

Question 15: Could some orm o requirement to access advice and support, where appropriate, help encouragethe minority o claimants who might otherwise not take action? I so, what would be the key eatures o such a

system, and what would need to be avoided?

Summary o ndings

While it was elt that more could and should be done to give support to disabled people, it was almostunanimously elt that there should be no element o compulsion to DLA or PIP.

In particular support should be a choice, not a condition. reatments, aids and support or disabled or sick peopleare highly individualised and DWP sta are not qualied to impose them.


We totally reject the wording o this part o the Government response. Tis proposal was almost unanimously

rejected by respondents who elt that conditionality had no place in this benet. Tis is not at all clear rom thephrasing

However, some people commented that this measure could appear to introduce conditionality into Personal Inde-pendence Payment, and that this would not be appropriate or a benet designed to contribute towards the extracosts o disability. (P35,84)

While we welcome the comment rom the Government that We do not intend to make Personal Independ-ence Payment conditional on taking up certain activities or support, we are extremely concerned that theGovernment admits we will keep this under review (P35,86).

Te Government goes on to say

We might reconsider this i it became clear that a proportion o people were ailing to access available aids, adap-tations or services that would signicantly help them. (P35,86)

Disabled people are absolutely clear that this benet should not be conditional and that DWP advisors arenot people qualied in any way to assess what sort o support would be helpul.

We noted rom the consultation that disabled people are highly individual and while a support or aid may helpone person, it may not help another even though they share the same diagnosis.

We ask or clarication rom the Government on who will decide on whether people are ailing to accessaids, adaptations or services.

We note in passing that it is against the law to orce people to receive medical treatment and question whether itis legal to orce people to access similar treatment under threat o withdrawal o essential benets.34

Conclusion: Te Government hides the degree o opposition to this proposal and overrides any concernsin this section.


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11. One-o Costs


Response rate: 42%

Question 16: How do disabled people currently und their aids and adaptations? Should there be an option touse Personal Independence Payment to meet a one-o cost?

Summary of ndings

Tere was a mixed response to using PIP or one-o costs. Some were conused and concerned by this question.DLA is currently used as wished by the recipient and so could be used or one-o costs. Is PIP to be dierent?

Others elt that i PIP were to be used or a one-o cost nothing would be let or day to day needs and thisshould be avoided.

Others elt that there are other avenues or one-o costs such as DFG, direct payments and/or local authorities,and that PIP should not be used as an excuse or local authorities not to ull their obligations.

Finally, some elt that there should be a bolt on application to PIP or extra one-o costs on top o the usual pay-

ments. Many responses ask or clarication.


In particular it ails to address whether there would be an element o compulsion over how PIP is used, since cur-rently DLA can be used as wished by the recipient and one-o costs are possible.

It ails to mention or address concerns that one-o costs may in uture have to be met by PIP instead o localauthorities.

Conclusion: Te Government ails to address the concerns raised in this section (P36, 89).

12. Removal o Mobility Allowance or Care Home Residents


Response rate: 42%

Summary o ndings

Tis was unanimously rejected, pointing out that there was no overlap in unding and this ruling would leavemany people unable to leave their homes. Some even elt it could contravene their human rights.

NB Tis has now been rescinded.

13. Streamlining / Removal o Passporting


Response rate: 63%

Question 18: How important or useul has DLA been at getting disabled people access to other services or enti-tlements? Are there things we can do to improve these passporting arrangements?

Question 19: What would be the implications or disabled people and service providers i it was not possible orPersonal Independence Payment to be used as a passport to other benets and services?


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Summary o ndings

Tere was great concern that there was a question about the passporting system intrinsic to DLA, in particular thecomment what benets (i at all). Tis was one o the most highly responded to issues.

Te large majority o respondents elt that this was a vital concept and opened up urther income which helpedcover some o the costs o disability. It should be noted that it by no means covers everything since a ull one inthree disabled adults live in poverty.35

Some o the direct passported benets mentioned included the blue badge, bus passes and some leisure activities.

It is noted that the Government intends to remove some o the passported additions currently guaranteedby DLA in the name o simplication, such as Severe Disability Premium 36 and the Independent LivingFund.37 Tis will by denition hit the most disabled people and goes against the Governments oten statedaim o protecting the most vulnerable.

Tere was also great worry about passported housing benet and carer allowances. I carers are no longer support-ed, amilies may have to adapt through other ways. Social services may have to step in. Te other parent may haveto give up work and claim benets. Te disabled person may have to go into residential care.

Tere is a lot o worry about how the change o bands will aect passported arrangements. Loss o a band willhave knock on eects and huge nancial repercussions.

Te loss o passporting would also cause a lot o administration and paperwork at great stress to the disabled per-son and great cost to the Government.


We agree passporting is important and saves administrative costs (P38, 96).

We agree with the Government ndings that the passporting arrangements allow access to other entitlementsincluding the Blue Badge scheme, the warm ront scheme, bus passes, special educational needs assessments,benet entitlement, and travel and leisure activities (P38,97).

We agree with the ndings that i passporting were stopped the results would be reduced mobility, greatersocial isolation and that ewer people would be able to remain in work and a nancial impact (P38,98).

Te Government ails to mention the knock on eect on carers and social services.

Te Government acknowledges the importance o passporting arrangements but ails to conrm that thesewill continue as they exist under DLA (P38,99).

Te Government ails to admit that some current passported benets will cease to exist in the name ostreamlining.

Te Government ails to address the ears that other proposed changes such as the change rom three rates o

benet to two mean the loss o some passported benets with serious knock on eects both to the nances o thedisabled person but also to the wider community.

Te only promise made in this section is that where a passported benet exists it will be easy to access. No prom-ise is made that passported benets will in act continue to exist. Quite the reverse, the Government seeks tostreamline the process (P39,100).

Conclusion: Te Government ails to add

the spartacus report: responsible dla reform

Documents