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The Deputy Chairman of Commitees (Viscount Simon): My Lords, if there is a Division in the Chamber while we are sitting, this Committee will adjourn as soon as the Division bells are rung and resume after 10 minutes.
The Parliamentary Under-Secretary of State, Department for Work and Pensions (Lord Freud): My Lords, if I may intervene briefly, I promised on Monday to provide some timetabling indicators of provision of information about entitlement thresholds for PIP and passporting arrangements for carers. I am happy to confirm our intention to provide entitlement thresholds for PIP and information on the likely impact of these ahead of the consideration of this part at Report stage.
Noble Lords will wish to be aware that we are looking carefully at the interaction between universal credit and carers' allowance. In the interests of providing a smooth taper of benefit provision as carers return to work, a carers' element is included within the universal credit structure, which of course removes the cliff-edge effect. That is why we have done that. In order for noble Lords to have the fullest possible picture of provision for carers as we debate universal credit, I will also aim to provide more information about the passporting arrangements from PIP to carers' allowance prior to the start of Report stage. Thank you for your indulgence.
Lord Wigley: My Lords, as I was saying before I was interrupted a couple of days ago, these amendments touch on a critical consideration-namely, the need to ensure that those making assessments can identify factors that may make it difficult to engage meaningfully, fairly and objectively with the applicants: disabled people, whose condition of course fluctuates, as has been mentioned already, and for whom communication itself is often a challenge.
Nowhere is this more evident than among those whose difficulties arise from the autistic spectrum of disorders. As was pointed out by the noble Lord, Lord Touhig, on Monday, on the autistic spectrum not only are no two people the same, but the same person may exhibit different characteristics over a period of time.
The Minister will, I am sure, have noted from Monday's debate that many of those who contributed-the noble Lords, Lord German, Lord Addington and Lord Touhig, and the noble Baronesses, Lady Howe and Lady Healy-highlighted the challenge of proper assessment in the context of autism. The noble Baroness, Lady Healy, emphasised the need for assessors to have specific training in autism, and access to expert champions. The noble Baroness, Lady Grey-Thompson, who moved the amendment, warned of the dangers of incorrect decisions where assessors base their conclusions on face-to-face interviews without professional knowledge and without experts' evidence. Given the extent to which autism factors have run through this debate, may I urge the Minister to address the points raised in that autism context?
In particular, I urge the Minister to ensure that in dealing with problems of face-to-face assessments, safeguards be written into the Bill, so that wherever there is ample expert written evidence available, applicants do not have to go through unnecessary face-to-face assessments. The Bill should stipulate that all assessment will take into account expert reports and evidence as a first tier in that assessment process.
Secondly, there should be a requirement that those undertaking assessment have appropriate training, including in autism. This is something about which Autism Cymru, the organisation in Wales, feels particularly strongly. Also, in every assessment centre there should be available to assessors appropriate experts or champions in mental, intellectual or cognitive disabilities, including autism.
The third point I want to underline-and these have all been raised in different ways by noble Lords who have contributed to this debate-is that the Bill and regulations must specify that parents and carers are categorically allowed to support disabled individuals at every stage in the assessment process. Those without such support should be told of their rights to an independent advocate.
Finally, I turn to the position of lifelong awards in the context of Amendments 86F and 86G, to which I have added my name. The Government have said that they want all awards to be for fixed terms apart from in exceptional circumstances, and that there will be some sort of built-in review process. Surely the Minister must realise and accept that there will be people who are sadly not exceptional, whose condition is a lifelong one and for whom the worry and uncertainty of regular reviews are an unnecessary imposition, the cost of which is a waste of public money. Does not all common sense say that those with a degenerative disease, for example, should not have to face repeated assessments? In this group there are more than 300,000 adults, as I understand it, with autism, whose core condition will not change; there are some 70,000 with MS and 20,000 with Parkinson's disease, whose condition
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Lord Low of Dalston: My Lords, I have put my name to Amendment 86ZB in this group. These amendments, which would dispense with a face-to-face assessment where there is appropriate written evidence, have considerable overlap with Amendment 86ZZZV in the name of the noble Baroness, Lady Campbell, in the next group. So, if I may, I will say what I have to say on the matter now and spare the Committee the repetition when it comes up later especially since, with apologies to the Committee, I have to leave for the airport at 3.15 and may not be around when we come to the later discussion.
Lord Low of Dalston: I particularly support the idea of a trial period before incurring huge public expenditure in reassessing 2 million disabled people, many of whom really do not need it, for example, if their circumstances are unlikely to change. Where there is written evidence of severe impairments, it is simply common sense to accept that evidence and avoid putting people through costly and potentially distressing face-to-face interviews. Setting out criteria that would signal eligibility for PIP without an interview is an administratively simple way to indentify those who have severe impairments that have already been assessed through written evidence as giving rise to a higher level care or mobility need.
The Government have said that they do not think it is right that we should judge people purely on the type of health condition or impairment they have, making blanket decisions about benefit entitlement. One can understand their desire to personalise the assessment process when the impact of an impairment may not be clear. However, it is obvious that in some cases the impact is clear from written evidence and beyond dispute in terms of its implications for the rate of PIP that should be awarded. For some groups of people it is perfectly clear from the severity of their impairment that they should be eligible for enhanced rates of PIP without further assessment. For example, if someone is deafblind, a face-to-face interview to establish that they have mobility needs of the highest level is barmy. If someone has no sight at all or no legs, no further assessment is needed to confirm that they have a high level of mobility need. In cases such as these, a face-to-face interview is simply a waste of money. In addition to avoiding unnecessary stress for severely disabled people, this amendment would save money for the taxpayer. It feels pretty much like a no-brainer to me.
There is a strong suspicion that this is not always done. The only thing that I would quibble with in that amendment is that not only does the decision-maker have to collect evidence, it has to be taken into account when the decision-making process is gone into.
I had to go to a tribunal having had my papers re-examined, presumably by a decision- maker. What will change about the process now with PIP? I am not quite sure, reading between the lines, what the two sentences that I have read out mean. Are things going to change from now, or not?
Lord Touhig: My Lords, I have already spoken in this debate but I ask the Committee's indulgence to make one other brief comment. The noble Baroness, Lady Gardner of Parkes, has tabled Amendment 86ZAA in this group. Yesterday, she was mortified when she realised that she has a commitment today which it is impossible to break and she cannot be here. I know that she has apologised to the Minister. She has asked me to extend that apology to the whole Committee and asked that I make one brief comment on her behalf. If she had been here, she would have said that if a person has a clearly diagnosed and irreversible condition, they should not be required to have continuing assessments as it causes them concern and adds unnecessary cost to the system. I think that point has been made by other noble Lords in the debate, but the noble Baroness was really keen to get that point on the record and, again, she apologises for not being here today.
The Lord Bishop of Blackburn: My Lords, I speak broadly in favour of this group of amendments, which address the fact that the assessment of individuals for eligibility for PIP is a complex and very stressful process both for those being assessed and for assessors, unless the assessors are appropriately trained and supported. That is a vital point that we must take on board: that the assessors must be well trained and well supported.
I remain concerned about the tests that the assessed are being put through, the activities and the scoring. I am not one of those bishops who have not come up through the ranks, as it were; I have spent most of my ministry in parishes. From a long ministry in parishes-I still visit the elderly regularly-I have seen parishioners able one day to prepare and cook a meal, and to be able to do virtually everything for themselves. Then I have gone in the next day or the next week and they can do very little unaided. These tests can be no more than a snapshot and we must again take that on board.
All along I have believed that there will be a real need for the most careful monitoring: the assessment cannot be made on a tick-box basis. That, I am afraid, is how it looks to many of us at the moment. It is
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The Earl of Listowel: My Lords, I hesitate to speak because I was not present at the previous part of this debate. However, after listening to today's debate and reading part of Hansard's previous report, I am prompted to ask a question. It may have been answered already and, if so, I apologise for doing so. In the sensitive processing of asylum immigrant applications in the immigration system, continuity of contact with the case officer-continuity of the relationship between the person being assessed and their case manager-has been found to be helpful. I would be interested to hear from the Minister what possibilities there are for that continuity of relationship in this context.
Lord McKenzie of Luton: My Lord, this is an important group of amendments which addresses aspects of the assessment process. As we have heard, some of the underlining concerns which the amendments seek to address are drawn from experience of the work capability assessment and the difficulties which this has created for disabled people. They all raise points which deserve our support, although I expect the Minister will say that, at least in part, they can be covered in regulations. To the extent that he does so, I hope the noble Lord will take the opportunity to put clearly on the record how each of these matters will be addressed.
The noble Baroness, Lady Grey-Thompson, cited WCA examples to emphasise the importance of evidence from the claimant's healthcare professionals being part of the assessment process, with the obligation on the DWP to organise this. Notwithstanding that we now have a bio-psycho-social model and that the condition or impairment that an individual has may in some cases be of limited value in assessing an individual's ability to participate in society, this will not always be the case, and there is a clear risk that without it the assessment could be significantly adrift. A process which does not incur the kind of charges which individuals face, to which the noble Baroness, referred, is important.
The amendment of the noble Lord, Lord German, concerning advocacy is also to be supported. As he acknowledged, the explanatory note to the draft assessment criteria is clear that an individual will be able to bring a friend or advocate to a face-to-face consultation. The implication is that such a person could be there to help with the process and not be just silent company. Indeed, I believe that was confirmed by the Minister in the other place when the matter was raised there. Presumably training for staff will enable assessors to sort out advocates who are trying to lead individuals. Claimants must be entitled to know that there is a right for them to be accompanied.
On Monday, my noble friend Lord Touhig gave a clear example of how this could be important. He raised the example of when someone was asked about a bus journey and gave an answer, which of itself would have been extremely unhelpful and misleading
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The noble Lord, Lord Addington, is a consistent advocate for those with autism and I have no doubt that his plea that those undertaking assessments should be properly trained in mental, intellectual and cognitive disorders will be supported by the Minister. Can the Minister confirm that this will be the case for decision-makers? Perhaps he can also say what is the planned position in respect of access to specialists, which is another key component of the noble Lord's amendment.
It is understood that the department has recently begun a tendering exercise for the assessments to be undertaken by a third-party supplier. Will the Minister say what specifically is being sought in respect of access to this type of expertise? Presumably, the specification has been developed at this stage. Therefore, can he also tell us what that specification indicates in respect of the numbers, the likely volume of face-to-face assessments and the numbers of likely exceptions to those face-to-face assessments? Perhaps he can also say something about the overall numbers. When this issue was debated in another place, reference was made to the prospect of some of the assessments being able to be undertaken at home-a more comforting and aware environment for some claimants. Perhaps the Minister can update us on this and also say how it is being dealt with in the specification.
We had a number of detailed and knowledgeable explanations from those concerned with autism, including from my noble friends Lord Touhig and Lady Healy and again, this afternoon, from the noble Lord, Lord Wigley. Their amendments seek relief from face-to-face assessment in certain circumstances where there is sufficient medical and other evidence on which to base a clear judgment. The challenges which face-to-face interviews can present for individuals with an autism spectrum condition were graphically described by my noble friend Lady Healy. She said that it is not just the nervousness or anxiety that is experienced at the approach of a difficult event, but dread and terror. The Minister demonstrated sympathy with this point of view at Second Reading. We hope that these amendments will enable him to say a little more in support of that proposition.
Lord Freud: My Lords, I would like to start by responding to the noble Baroness, Lady Grey-Thompson, on her Amendment 86ZZZUA. Obtaining the right evidence for assessors and decision-makers will be a key part of the assessment process for personal independence payment, enabling us to make the best decisions regarding an individual's claim. Such evidence might come from a range of sources, but in particular from the healthcare professionals involved in supporting disabled people on a regular basis. This may sometimes be the individual's GP, but in other cases will not be. Many individuals, particularly those with longer-term conditions, may not have not seen their GP for some time and another professional might be much more relevant. This is why we want individuals to tell us who we should be seeking evidence from, as they will know best.
We will encourage individuals to provide this evidence to support their claim or, if they cannot, to let us know who it would be best for us to approach directly. We do not wish to create a two-tier system, as feared by the noble Baroness. However, I do not necessarily think that we need to gather such evidence in every case. In some cases what the claimant has already told us, or provided alongside their claim, will be sufficient. In other cases, information from a health professional might be likely to add only limited value. We must remember here that what the condition or impairment is, or its severity, is often not critical in the assessment; it is the impact of it that matters. The gathering of additional evidence should be decided on the merits of individual cases.
The noble Baroness referred to learning from the work capability assessment used in employment and support allowance. Although it is important to be clear that ESA and personal independence payment are very different benefits paid for very different reasons, we are seeking to learn from the experience of delivering the work capability assessment. As part of this we are looking closely at the findings of the independent review of the assessment carried out by Professor Malcolm Harrington to see where we can improve the design of the personal independence payment claim and assessment processes. For example, we recognise the need to ensure that these processes are empathetic, that we gather the best possible evidence and that assessors are given the training and support they need.
I turn now to the amendments tabled by the noble Lord, Lord Touhig, and the noble Baroness, Lady Gardner. Evidence will also enable us to make the best decisions about how an individual's claim should be dealt with, including whether a face-to-face consultation is necessary.
We recognise the importance of the assessment process being carried out sensitively and proportionately. We have made it clear that we believe that face-to-face consultations should form part of the claim process for most individuals. Consultation will play a key role in creating a fairer, more objective and transparent assessment, providing individuals with the opportunity to put across their views on how their impairment affects their everyday lives.
However, where there is already sufficient evidence on which to make a decision on entitlement, we completely agree with noble Lords who argue that a face-to-face consultation should not be required. In such cases, entitlement would be considered on the basis of paper evidence only, and we have the flexibility in legislation to allow for that.
In doing so, we are ensuring that we will have a tiered assessment-as recommended by the National Autistic Society, and referred to by the noble Baroness, Lady Healy and the noble Lord, Lord Wigley-a process where we consider evidence provided by the claimant first, then any additional evidence gathered and then carry out a face-to-face consultation only if needed.
However, we do not agree that there should be different rules or processes for different groups of people, and especially not on the basis of impairment type. Exempting individuals from the face-to-face
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The only exception to that principle is where individuals are claiming under the terminal illness provisions, whom we will not expect to attend face-to-face consultations. I am sure that all noble Lords will accept the need to make an exception under those circumstances.
Picking up the point made by the noble Lord, Lord Wigley, on the frequency of reassessments, we will take a personalised approach to setting the length of awards, varying the frequency and formats of awards and reviews depending on the individual's needs and the likelihood of the impact of their health condition or impairment changing. Some people will have short-term awards; others longer; and some will receive ongoing awards. It is also important to state that reviews may not always necessarily involve face-to-face consultation. We recognise that it will be important to ensure that the review process is applied sensitively and appropriately.
Having discussed the need for face-to-face consultation, I feel that this is an appropriate juncture at which to turn our attention to my noble friend Lord German's amendment regarding the attendance at a face-to-face consultation of a suitable person alongside the claimant. We appreciate that some individuals will be able to participate in a face-to-face consultation only with the additional support of someone whom they know and trust. It has always been our intention that individuals should be advised that they can bring with them another person-be it a relation, friend or professional who supports them-in order to help them or to remove any anxiety that they may feel in undertaking a face-to-face consultation. Indeed, the Minister for Disabled People made that exact point during debate in the Commons. That will apply to all claimants.
I agree with my noble friend that the suitable person should not just be a bystander to proceedings. They should be able to play an active role in supporting the claimant and ensuring that they understand the assessor's questions and requests in order to help them to answer them on their own. Where the claimant is not able to speak for themselves as they should, with the claimant's consent, they should be able to engage with, and respond to, the assessor directly to ensure that they are provided with the necessary information-particularly in the context of all of our concerns with the community on the autistic spectrum. I hope that that reassures my noble friend and noble Lords more generally on this critical point.
This important measure does not need legislation. We have already made a clear commitment to it and are building it into our processes, guidance and within the commercial framework with the successful assessment supplier.
The sensitive and proportionate approach we are trying to build will only work if the training is right. This brings me to the amendment of my noble friend
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Assessors will be required to have a broad training in disability analysis as well as training on specific impairments. As part of this we intend to ensure that they have sufficient training in mental, intellectual and cognitive impairments, such as autistic spectrum disorders, and will stipulate this in our contracts with the eventual provider. However, it is not our intention to make assessors experts in every condition-rather, it is to enable them to deal effectively with the full range of individuals that will apply to personal independence payment.
It is important here to state that the assessment will not be a "medical assessment", requiring the assessor to diagnose a condition and recommend treatment options. Instead it will require the assessor to look at the impact of conditions and impairments on individuals' everyday lives. This requires a very different skill set from assessors than, for example, those involved in the treatment of individuals, with a lesser need for more in-depth knowledge into specific conditions.
Picking up the point made by the right reverend Prelate the Bishop of Blackburn on fluctuating conditions, we are committed to ensuring that assessment works for people with fluctuating conditions. After all, most conditions fluctuate to some degree. However, assessing fluctuations is probably the hardest part of assessing disability. We propose that the assessment should not be a snapshot of any one day but should consider ability to carry out activities over a period of time-we are suggesting a year-and will consider impacts where they apply on more than 50 per cent of days in this period.
I know that noble Lords have heard this before in relation to other assessments such as the work capability assessment. We are determined to learn from previous experience-and indeed failings-so that we get this right. For example, I would like to explore ways for organisations such as the National Autistic Society to play a role in helping ensure that training is of a sufficient standard.
We also recognise that there may be occasions where assessors may need to access more specialist support in the course of assessing individuals. We are therefore looking closely at opportunities for giving assessors access to, and support from, individuals who have a greater knowledge of specific conditions. This is in line with the recommendations made by Professor Harrington during his review into the work capability assessment, which I know the National Autistic Society supports, where he called for there to be mental, intellectual and cognitive "champions" available to support assessors. However, we believe that assessors should use their own professional judgment as to when they need to seek further input in this matter, rather than constrain them through legislation.
Picking up the questions from the noble Lord, Lord McKenzie, on the numbers of assessments, I cannot give him the figures now as we are currently working up the specification for the invitation-to-tender phase
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I hope that I have reassured noble Lords that the assessment process will be sensitive, proportionate, personalised, based on sound evidence and delivered by individuals with the right skills, training and support. On this basis, I urge the noble Lords and the noble Baroness to withdraw their amendments.
Lord Wigley: Before the Minister sits down, he mentioned the possibility of developing in conjunction with the National Autistic Society an initiative to augment training. Is he aware of the scheme that has been running in Wales, under the autism plan that was adopted by the Government of Wales, with training work undertaken by Autism Cymru with Careers Wales and to some extent with Jobcentre Plus itself? Last February, an online booklet was published for Careers Wales and Jobcentre Plus, and there were similar publications on autistic conditions relating to the advocacy service and GP practices. Are these the sort of initiatives that the Minister sees being developed in conjunction with the National Autistic Society?
Lord Low of Dalston: Before the Minister concludes, I am sorry if I was not paying attention, but I did not hear him respond to the points made about our amendment about cases where the written evidence was clear and unambiguous, where there were very high levels of need which, the nature of the impairment made clear, were unlikely to change. I heard the Minister say that the assessment process would be implemented with flexibility, but my impression was that the avoidance of a reassessment would be a pretty exceptional situation. Those of us who support Amendment 86ZB believe that cases where people's circumstances are unlikely to change and their high levels of need have been unambiguously and unequivocally evidenced are not isolated exceptions. That is a widespread and general circumstance. Can the Minister respond a bit more positively on that?
Lord Freud: My Lords, taking those questions in the order that I fancy, let me start with the noble Lord, Lord Low. If I did not make it unequivocally clear, let me do so: where the written evidence is unequivocal, we will take decisions on the written evidence and continue to do so. I hope that that is absolutely clear, and I am sorry that I did not say that with enough emphasis.
On the point made by the noble Lord, Lord Wigley, the National Autistic Society is undertaking some extremely good initiatives. I was just considering one in Northern Ireland with Jobcentre Plus. To be honest, I was not aware of that particular one mentioned by
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My noble friend Lady Thomas refers to how the WCA works, rather than how the PIP might work, because we have not completely developed it. The best I can do on that issue is to write to her setting out the position precisely. I hope that that is satisfactory for her.
Baroness Grey-Thompson: My Lords, I thank all noble Lords for their contributions on this group of amendments and the Minister for his comments. I feel that I am not knocking at a completely shut door. However, I still believe that those who should be allowed to be consulted should be made more explicit in the Bill. I also accept that, in some cases, collecting additional evidence from the claimant's medical practitioner may be unnecessary as the decision may be clear-cut. I think the noble Baroness, Lady Thomas of Winchester, for highlighting the fact that information should be used, not just collected. That has given me plenty of food for thought on my future wording.
There has been strong support for the use of the best evidence possible so that we can arrive at the right decision for the disabled people concerned and be effective in the use of public money. To not take medical evidence into account or use appropriate support advocacy, as mentioned by the noble Lords, Lord Wigley and Lord German, would be a false economy. However, we are still missing something.
As regards the financial cost and the cost in time of an appeals process-not to mention the stress that that will cause to the great number of people who will have to go through it and the fact that it could block up the system-I would much rather the money go into people's pockets than into the process. On the testing process, it does not matter whether you ask 20 or 200 questions, if the claimant is not able to give the best answer or the right answer, or the answers are not correctly linked together in the process, you will not get to the right decision and will be left in a situation where there is a huge number of appeals. I am not asking for more money to be spent; only that it is spent in the right place.
The Minister referred to the correct training for assessors to ensure that they reach the right standard. That is incredibly important. However, I am not convinced that we are yet in the right place; there is still much work to be done. I shall return to this issue at a later stage. However, I beg leave to withdraw the amendment.
"( ) must provide for a minimum one year trial period for the assessment process to be implemented on new applicants and a formal independent review of the trial period before the assessment process is used to transfer existing DLA recipients;
( ) must provide for disabled people's organisations to be involved in the assessment process; and
( ) must provide for people with significant costs of living as a result of an impairment or health condition or both, who are unlikely to experience a change in any or all of the health conditioning impairment or costs of living over a five year period, to not undergo more than five yearly assessments."
Baroness Campbell of Surbiton: My Lords, the amendment seeks to enhance disabled people's confidence in the new testing system and to ensure that limited government resources are not wasted on an ineffective or inappropriate assessment system. It dovetails well with the group of amendments we have just debated.
We are well aware now-as the Minister has recognised -that there have been enormous inadequacies in the work capability assessment approach to incapacity benefit reform, which has seen thousands of disabled people unhappy and inappropriately found fully fit for work when they were not. The system wastes considerable public resources, and appeals alone cost £19.8 million last year. It is deeply worrying that the DWP estimates higher costs for correcting procedural or assessment failures this year. This is despite the assessment having run for three years already at an annual running cost of £100 million for the assessment alone and ignoring DWP costs. I am sure that the Government wish to avoid introducing another assessment system which invites such public controversy and which seems to represent such poor value for money.
Trialling is absolutely necessary. It is somewhat ironic to suggest to disabled people receiving DLA that their needs are no longer affordable but that £675 million is available to pay for the new PIP assessment. As we have heard, this benefit helps with the basic essentials of living, including illness and impairment-related diets, heating and help with personal care and equipment. My amendment would ensure that money is not wasted on an ineffective test by providing an appropriate trial period for new claimants and a report to Parliament on the implementation of the new testing system. This approach offers a better chance to improve the process before disabled people currently receiving DLA are transferred to the new system. Let me explain in more detail what I propose.
This amendment would enable the new assessment to be tested for its practicality, introduce more flexible and evidence-based intervals for review of entitlement to the benefit, and put into practice the Government's commitment to co-production. How would it test the practicality of the proposed assessment and reassessment system? For a start, it would enable the Government to test the administrative implications and related costs of the proposed requirements for independent medical evidence and face-to-face interviews. For example, if 2 million adults undergo an assessment and each makes a request for a GP or consultant's medical notes, this will inevitably incur costs in both money and time for the NHS. Providing a proper trial period and review of the processes in year one will help to
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The second benefit of this amendment is that it could save the public and the Government money by ensuring that the system for reviews is efficient and appropriate. We need to avoid a one-size-fits-all system that requires someone who is deafblind, for example, to undergo regular assessments at intervals that are entirely inappropriate for their needs and circumstances. At the same time, the system of reassessment must be flexible enough to recognise that some people's support needs change over time. To propose a one-size-fits-all system of face-to-face assessments for every disabled person would be extremely expensive. A smarter approach, which identifies appropriate review intervals, is possible.
The assessment process should estimate whether costs and needs are likely to change over the next five years. If the estimate is that they will not, no further assessment should be required for that period. However, as now, new assessments will be carried out if needs change and disabled people would still be required to inform the DWP of any such changes. This amendment would reduce the costs of a new system and the burden on disabled people of having to attend unnecessary assessments, while at the same time enabling the DWP to check that people remain eligible.
Finally, this amendment would also allow for the involvement of disabled people's organisations in the testing process. Yes, we are back to my hobby horse of co-production. However, I am very heartened by the Minister's recent remarks that this is just the kind of involvement that the Government are keen to promote. Indeed, this approach is reflected by the Department for Work and Pensions, which is now studying the issue. From my own experience of working with the department, it is very keen to involve people at every step of the way, so why not involve them in the trial?
I am also aware that potential bidders for the new assessment process are approaching disability organisations and are keen to work with them. Indeed, there is very good news for everybody, which is highly popular. Therefore, I hope my amendment will receive government approval. Having a commitment to the involvement of disabled people in the Bill will do much to offset the controversy that currently surrounds these proposals. Confidence is at rock bottom; this could do a lot to solve that. It would also send a very strong signal that the Government take "nothing about us without us" seriously and are prepared to demonstrate this in constructing new disability-related costs that are fit for purpose.
In summing up, this amendment would represent greater value for money and would drive costs down in a tough economic climate and at a time when disabled people are being told that their support is being cut back due to lack of government resources. It would also enable the Government to demonstrate their commitment to working in partnership with disabled
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Baroness Wilkins: My Lords, at the risk of replaying the record, this is an important amendment because it would go a long way to protect the Government from facing the same sort of vilification that they have received from their introduction of the work capacity assessment for employment and support allowance. Much more importantly, it would protect disabled people from facing the anxiety, illness and ill health they have experienced while undergoing the headlong rush to reassess the 1.5 million claimants for incapacity benefit. That reassessment has gone ahead despite the fact that the Government know that the assessment criteria are seriously flawed.
"We have received suggested descriptors for mental, cognitive and intellectual function from Professor Harrington's working group. Given that they represent a substantial departure from how the current assessment works, we are considering what impact they will have and will come forward with proposals soon".
"The challenge facing us is that the recommendations will involve a complete change of the work capability assessment, not simply for mental health issues, but for physical issues, and is therefore a multi-year project".-[Official Report, Commons, 24/10/11; col. 8]
I was going to quote from the lady I mentioned in an earlier debate, a GP who attended a recruitment evening for Atos assessments, and who wrote in the BMJ this year. The figures that she was quoted about what a doctor could earn from the assessment process were, I found, quite shocking.
Sessional doctors work a minimum four sessions a week, and are paid per item: £51.37 for non-domiciliary disability living allowance examinations, for example. The application forms for sessional doctors state :
I ask the Minister-and I apologise if he has already given this answer to the noble Lord, Lord McKenzie-what is the Government's estimate of the cost of re-examining the thousands of people whose conditions will not change, or will only worsen? And can he remind us how often he is expecting them to be reassessed ?
Lord Touhig: My Lords, like many noble Lords I am a great fan of pre-legislative scrutiny, because I think it improves the quality of the legislation we pass. I also have great faith in this Committee system, because we go through a Bill line by line in order to improve it, amend it, and make good law as a result. I certainly support this amendment, because a trial period does make sense.
I look across at my good colleague the noble Baroness, Lady Browning. She and I sat on the Public Accounts Committee in the other place. Time and again we considered reports from the National Audit Office
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Some unfortunate Permanent Secretary would be brought before the Public Accounts Committee, and like modern-day Draculas, we drew a lot of blood in our interrogations. Inevitably, this Permanent Secretary was not responsible for what the department had got wrong, anyway; it was the previous incumbent, but that is by the by. We were seeking to learn lessons, but inevitably it was like closing the door after the horse had bolted. If only more care had been taken, or things had been trialled and piloted beforehand, then things would not have gone wrong in the way that they did.
If the Government take this amendment on board, it has the potential to save millions of pounds. If the Bill does not take account of this, then somewhere down the track the NAO will come in, in two or three years, and find that there has been some great failure, or some great cost. The Public Accounts Committee will have to investigate, and the Department for Work and Pensions will be held up again as having failed to pilot or introduce a scheme in a good or effective way, as it promised it would. The amendment makes a lot of sense, and I hope the Minister will see that.
Baroness Browning: My Lords, this is the first opportunity I have had to contribute to the Committee. I declare my interest both as the named carer of an adult with autism and as, I believe, somebody who will need to attend the assessment meeting with him. I am that other person, so I am more than personally interested in this legislation.
My friend the noble Lord, Lord Touhig, made a good point about getting good value for money and making sure a system works. However, there is another point about trialling it with new applicants. I remain cautious about the ability of a lot of people newly recruited for the purpose to carry out what will be really quite difficult balances of judgment across a wide section of people, particularly those with learning disabilities, mental health conditions and autistic spectrum disorders, some of whom will have two or all three of the conditions.
I refer the Minister to my personal experience over many years: I am very proud to have raised the very first debate on Asperger's syndrome in the House of Commons many years ago. When it came to getting contracts signed for people to get people into paid employment, one of the contract requirements was that the various agencies and commercial companies had a full understanding of this range of really quite difficult disabilities. All too often that training and preparation was based on reading up and taking a bit of advice. It never, ever, made the mark.
To give an example, in the case of people on the autistic spectrum it is well known-if I am to generalise and as has been said quite rightly they are individuals who will all display individual characteristics-that their lack of imagination and inability to express and
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Therefore, a lead-in period is needed to assess not just the value for money and the way in which this new system is working but also to allow for time, which is really needed, to make sure that the people carrying out these assessments have a working knowledge of some of the more complex conditions and a much better understanding to be able to make their judgment.
Lord Boswell of Aynho: My Lords, I have not spoken much in Committee on these issues but, very briefly and in support of what has been said, I, too, should like to register my concern. Having had the benefit of reflecting on what has been said so far, there seem to be two underlying themes. The first is that there is a need for the system-that is, the Minister and his officials who are acting on the legislation that we are in the process of enacting-to proceed with a degree of humility. I do not mean fawning or trying to say that there are no problems, or that it is impossible for a Minister to take a decision. A Minister always has to take a decision, or officials must do so in his name. However, I detect in the Minister's responses this afternoon a readiness to understand that past practice has often been defective and is often, if I may say so, seen to be penal by the individuals concerned when they are in this process as claimants. Therefore, the process needs to be more sensitive to their needs and more conscious of the limitations of the human who has the power to bestow or withdraw the benefit. There should also be more understanding of the fallibility of the system.
Of course, we have to reach a conclusion but the idea of at least some process of iteration, evaluation and progressive change is important. I read the assessment criteria for PIP again today. They say explicitly that trying to get it right is an "iterative process". That is what we are all trying to do, including the Minister. We are all trying to get a sensitive response. It is
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That brings me to my second point, on flexibility. If we eventually say, "We've done an awful lot of consultation and this is where we are. That's it", we will get into the danger that the noble Lord, Lord Touhig, reported. That is, if it becomes the law of the Medes and the Persians, we could then find that we are overtaken by events or experience and that it is not good enough. We would then be creating unfair or penal situations, or we would have to tear up the legislation and start again.
All I should like the Minister to say-I think he will want to signal something like this-is that the Government understand that this is an extremely sensitive area, particularly in relation to people on the autistic spectrum, but also more widely. We need an understanding that the system is on the side of individuals who are involved in this process. It is not designed to leave them out, humiliate them or create embarrassment for them; it is designed to be fair to them. I think there is a wish to do that. Fallible officials who need training, and may need retraining or development in this process in the light of experience, should also understand that they, too, are part of this process of discovery. The more we move away from the conventional model of opposition-of advocates and a decision-that we have always enjoyed in the Anglo-American system, towards an understanding that we are trying to hammer out a process that is fair to individuals and reflects their genuine needs, the better and happier we shall be.
Baroness Howe of Idlicote: My Lords, I support this suggestion, which would solve an awful lot of problems. It would clearly give the Government time to catch up with their own aims and put them into practice much more clearly and in a way that other people will understand and be able to act on. There is a need for training and, from what we have heard from those who have practical experience, a need for retraining of some of the so-called experts. I am also slightly worried by what the noble Baroness, Lady Wilkins, said at the end of her contribution about huge sums of money being paid for "expertise" in this area. There was, almost inevitably, a comparison with the individual at the receiving end. Maybe we cannot afford to give them more but it is a small sum compared to what the expert gets. This is another opportunity to strike a better balance.
The Earl of Listowel: My Lords, I support the amendment. Does the Minister think that it might be worth while if he made a few comments on the issues of continuity and supervision of staff? I hesitate to ask because I am unfamiliar with this area but in the areas of the asylum and immigration process, which has some similarities, and in social work and work with vulnerable children and families, the two themes seem to be, first, continuity of relationship wherever possible and, secondly, good quality supervision.
Lord Freud: I apologise to the noble Earl, Lord Listowel, for not responding to that point previously and I intervene to do so. There is a huge difference
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The Earl of Listowel: I suspected it might not be. For people with fluctuating conditions, where there is a likelihood of their going back on repeated occasions, perhaps one could sort out within a particular group individuals who would benefit from having regular contact with the same person. In the spirit of co-production, some individuals who are going to be assessed on a repeated basis may perhaps like to choose the person they deal with. However, as I say, I do not know how it works in practice at the moment so this may be by the by.
On listening to this debate, the question of the supervision which takes place in the social care arena seems to be pertinent. I am grateful to the Minister for making it possible for a social worker to visit the officials working on this and to discuss matters of supervision. In social care it is very important for front-line staff to receive quality supervision on a regular basis for three purposes: first, to check that they are doing the right job; secondly, to check that they are receiving the right continual professional development; and, thirdly, to ensure that they are not responding inappropriately to the clients.
On the third purpose, we all come to life with our experiences, and some assessors may find it difficult to work with particular clients who rub them up the wrong way. They need to be able to go to their supervisor and say, "Look, I feel really uncomfortable working with this person. I am not sure it is actually anything to do with them. Can you help me to sort this out?" They need a sounding board, if you like. That is one aspect.
On the continuing professional development side, this is a training aspect to check that they are continually building on their understanding of, let us say, autism. They will start from a point of ignorance but, in the course of years of experience, they will learn more and more. They are helped to do so and their supervisor ensures that they get the opportunities for that learning and enrichment. It is a draining job and the people doing it need to be recognised, supported and enriched. I have covered those three points but, as I say, I am not sure it is pertinent.
The proposal for a trial arrangement might allow an opportunity for us to find the most effective kind of supervision we can afford to provide and where there are opportunities to build continuity of relationship with clients.
I have an amendment later in the Bill which relates to how one manages the system and the culture in this area. If the people at the very top of some of these organisations had experience of social care-if one could be confident that there was a senior social worker at the top of the Jobcentre Plus arrangements, or whatever-they would have the necessary insight and the understanding to help people on the front line who will need a system of this kind to assist them in working with vulnerable adults. In that way, even with limited resources, the best outcomes could be achieved in the circumstances.
Baroness Grey-Thompson: My Lords, I support the noble Baroness, Lady Campbell of Surbiton, and this amendment is also in my name. It is vital to ensure that the new framework is right, and this amendment gives me some comfort in what is a very difficult time for a huge number of disabled people. The noble Baroness, Lady Howe of Idlicote, mentioned time. That time is required.
If someone has a health condition that is likely to improve, or a newly acquired impairment to which they are likely to adapt, no one would argue that the costs might not change over time and that there should not be a reassessment. For example, the costs of someone who is a lower leg amputee will be very different in the first 18 months or two years after the amputation from what they may be 20 years later when they have adapted to it. However, when someone has a health condition or impairment that is unlikely to change and the costs are likely to remain the same, it does not make sense to keep sending them for more face-to-face assessments. For people in this situation it should be enough to confirm with the claimant's healthcare professionals that their condition is unchanged. I feel very strongly about this because the following claimant told the MS Society how she feels about the prospect of face-to-face assessments. Many like her find this process very strange given that so much is known about the condition, including that it will only get worse and not better. When such claimants have to talk to a stranger about some very intimate details of their life it can have a devastating effect on them. The claimant said:
"I am already dreading the day when I have to sit in front of someone and explain myself to them ... When I am already seeing a neurologist and a whole team of people who help me to try and live as best I can with MS ... This is just not fair in my eyes. ... Shame on the people who have come up with these changes which once again affect real people who have no choice but to try and live with this illness".
Baroness Lister of Burtersett: My Lords, I wish to speak briefly in support of the hobby horse of the noble Baroness, Lady Campbell of Surbiton, which we should take seriously. I was struck by what she said about how a trial period in which disabled people's organisations were involved could do a lot to restore confidence in the system. I am sure that I am not the only noble Lord who has been struck by the e-mails, letters and faxes that I have received, which demonstrate that that confidence is at rock bottom. There has been a catastrophic loss of confidence. The noble Baroness is offering the Government perhaps not an olive branch, because that suggests that a war is going on, but an opportunity-I suggest that the Government would do well to grasp it-to listen to what is being said, accept this amendment with its trial period and involve disabled people's organisations. That could go a long way to restore confidence in this system.
Baroness O'Loan: My Lords, I apologise to the Committee that I was unable to be here at the beginning of the proceedings. The amendment tabled by the noble Baroness, Lady Campbell, to Clause 78 has to
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The proposal for a trial period and the involvement of disabled people's organisations in the assessment process will undoubtedly enhance that process, but it will also put the United Kingdom in a position in which we are in compliance with our obligations under the convention. I am sure the Minister will be aware that it will be most important to have a review in terms of having confidence in the Government's new system, and to ensure that injustice is not done and that people do not lose the right to benefit simply because of a flawed assessment process, particularly one that is not conducted by those with the necessary expertise, as was referred to by a number of noble Lords.
I refer the Committee to Articles 19 and 20 of the UN Convention on the Rights of Persons with Disabilities, which are particularly relevant in terms of the opportunities that disabled people need in the context of this amendment. It is also cost-effective; more importantly, it is respectful of the rights and dignity of people with disability. As the noble Baroness, Lady Grey-Thompson, was saying, when they are unlikely to experience any change in the health impairments from which they suffer and which result in significant costs, they should not be required to be assessed more than once every five years. It is a human rights issue. The assessment process itself, as we have been told, will take a toll on such people and it would be disproportionate, unnecessary and unproductive to require more regular assessment.
Lord McKenzie of Luton: My Lords, a compelling case has been made for a trial period before the system goes live in its fullest extent. When this was debated at the other end there was some debate around the difference between a pilot and testing, and what that meant in government legalese. The proposition seems very clear: we want to see it working in practice before it is more widely available, for all the reasons that have been advanced by noble Lords about confidence, which I link with the issues of co-production, value for money and testing the capacity of providers. If it is to be meaningful, this would have to be done together with whoever will end up being the provider. It could not be done just with DWP staff, with providers coming in later. We acknowledge what is clear from the documentation we have: there has been an enormous amount of testing and engagement to date. However, that is not the same as or a substitute for having the final subject of the trial criteria in place and knowing where the thresholds are.
The amendment says that the trial period should be in respect only of those new claimants. I wonder quite why we are adopting that cut-off point. Is there not also going to be an issue for existing DLA recipients who have to go through the process and how that is handled, with all the communications and sensitivities around that? In particular, I think we know there will
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I want to make a point about capacity as well. We do not know who the new providers will be. Certainly, if they can earn the sums that my noble friend Lady Wilkins referred to, you would think that there should not be a capacity issue-certainly not in terms of numbers. However, I recall an instance a couple of years ago when, for industrial injuries benefit, the condition of miner's knee was recognised as something that had to be compensated. Trying to pull in capacity to get those assessments done was, frankly, the devil's own job because the existing providers did not have enough people to help out, certainly not in the timeframe that was wanted. Although, in a sense, the system will not be fully up and running even in that one-year trial period, this seems to be an important opportunity to test that capacity-not only in terms of the numbers but the processes and how people are being dealt with, and the levels of expertise that we expect to be available. This is a real opportunity to try it.
One thing that strikes me-it has been part of the whole debate over this Bill-is how pervasive the problems with the WCA are right across the spectrum. If we knew when that was introduced what we know now, there would have been much more careful testing of it, as is requested and sought by this amendment. Therefore, I do believe it is important to see how it is happening in practice before it is rolled out more widely, whether that is over one year or a different period.
Lord Freud: Let me take each of the noble Baroness's amendments in turn. On the trialling of the assessment, I am sure that noble Lords are aware that it is possible to test out and evaluate the assessment process without trialling it. There is, indeed, an advantage to testing over trialling, because the former can be done without affecting an individual's entitlement to benefit.
The noble Baroness will be aware of the testing we undertook throughout the summer with more than 900 disabled volunteers, and the informal consultation that took place alongside it. Both were very effective, and allowed us to review, revise and improve the draft assessment criteria from the draft published in May to the draft with which noble Lords have recently been provided. We are now seeking further views on that.
For our testing, using independent experts has demonstrated that our proposed approach to assessment is both reliable and valid. This testing included individuals on the autistic spectrum. This is not the end of the matter, though, as we believe the development of the benefit processes, including the assessment, should be and will be an iterative process. Therefore, in addition to testing of the assessment, we have created a specific development group to engage with a broad spectrum of disability organisations, to understand their views on a range of issues related to the delivery of the benefit. We have also created a number of customer research panels made up of groups of disabled people
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Turning to the independent review of the trial referred to in the amendment, I first state that I do appreciate the importance of such reviews, and will talk about that in more detail later. However, undertaking this after only one year of operation would not provide adequate time for the assessment process to bed in. It would not allow enough time for sufficient data to be captured, as it requires people to go through the full claims process in this time, and there are inevitable lags in the production of statistics. Any subsequent analysis would therefore provide an unrealistic impression of how the benefit was operating.
There are, of course, other means by which we seek to evaluate and improve the operation of the new assessment. The assessment and its associated process will remain living tools, and we will continually carry out internal evaluation work to monitor their performance. We will therefore not have to wait for the outcome of the independent review to learn from and take action based on operational and individual experiences.
The second element of the noble Baroness's amendment is the involvement of disabled people's organisations in the assessment process. Let me assure the noble Baroness that we have involved disabled people's organisations in the development of this policy from day one. We are trying to approach this work in a co-produced way, seeking the views of disabled people and their organisations at each stage. I have mentioned in earlier debates that our assessment development group comprises members of Equality 2025 and Radar. Both have provided critical support, direction and challenge throughout the process of developing the assessment criteria.
We also held a 16-week informal consultation on our initial draft of the assessment criteria, which sought the views and opinions of disabled people and their organisations. This process helped us to revise the initial draft assessment criteria and develop the second draft, which has lately been made available. Most of the changes that we have made have been as a direct result of the input of disability organisations. We are now seeking views on the second draft and, importantly, the proposed weightings, before we reach any firm views on the entitlement thresholds. We then intend to carry out a full consultation on the entire assessment criteria, including the weightings and thresholds.
Equally, we are involving disabled people and the organisations that represent them as we design the operational processes for personal independence payment. To achieve this, we have created a dedicated working group specifically for this purpose. The group's membership has been drawn from a wide number of national and grass-roots, user-led organisations, and it is currently working with us on a range of operational issues. We also see disabled people's organisations playing a key role in the delivery of the new benefit, helping to inform individuals and guide them through the process. This could include assisting them in making
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Meanwhile, there is nothing in the legislation to prevent disabled people's organisations being involved in the delivery of assessments. The key for us is ensuring that, regardless of which organisation or organisations deliver the assessment, they have the capacity to do so, and that individual assessors have the requisite skills and experience. Disability organisations have been free to participate in the procurement exercise for the assessment, which is now under way, either as prime contractors or as partners of such organisations. Whatever the outcome of this exercise, we will ask the assessment provider to work with disability organisations and seek their input, so that we can deliver the best possible service to claimants.
The final element of the noble Baroness's amendment is intended to ensure that individuals whose condition is unlikely to change over five years should not have to undergo an assessment more often than once every five years. We will discuss this issue in more detail in a later group of amendments. However, we know that disabled people's lives are varied and that health conditions and impairments affect people in many different ways. As I have said before, we therefore do not feel it would be appropriate to make blanket rules for particular groups of people.
Under personal independence payment, we want individuals' treatment to be tailored to fit their personal circumstances. This includes our approach to award length and review date, which should also be personalised. Such an approach would be able to take into account the likelihood of the impact of an individual's health condition or impairment changing. We know that for some people a shorter-term award might be appropriate. For others, a longer-term award might be appropriate, while, for those with the severest disabilities, an ongoing award might be right. We absolutely do not want unnecessary reviews of claims, both to reduce the impact on individuals and to ensure that we do not waste money.
Lord Freud: My point is that we will try to minimise those costs by not having reassessments in those circumstances. I cannot put a precise figure on it but I can tell the noble Baroness that our ambition is to have as low a cost as possible in those circumstances. Assessors and decision-makers should be empowered to make these decisions based on the circumstances of the case and with the aid of departmental guidance.
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Picking up in slightly more detail the point made by the noble Earl, Lord Listowel, we are working through the procurement process at the moment and will recognise the importance of appropriate quality measures and controls as part of the contracting process. This will ensure staff are properly supported as well as supervised. An example of this is the legislative requirement for assessors to be approved by the Secretary of State. This will require ongoing demonstration of competence.
The noble Baroness, Lady O'Loan, raised a point about the UN convention. The introduction of PIP is compliant and the co-production has involved disabled people at all stages. We have committed to undertake a full consultation exercise and will take into account fully the views of disabled people. In addition, there is full compliance with the European Convention on Human Rights.
Baroness Hollis of Heigham: My Lords, can I make one proposal to the Minister? He may not feel able to accept this amendment-although given the strength of feeling in Committee I hope very much he takes it back and reflects on whether he can move more than he has been able to do today, otherwise I am sure it will come up on Report. Can he at least consider, as a fall-back position, that for a year new applicants who have been refused and existing applicants who are currently on DLA who will lose entitlement under the proposed new PIP would have a further personal review stage put into the system? This would involve not just the decision-maker but the disability organisations so they can work through the material themselves to see whether they would uphold the decision.
The Minister and the department will need additional knowledge-building within the decision-making process. The best way to do that in that first year may be to look at the cases that are being refused or declined and reconsider them before the applicant is notified. This would ensure that errors have not been made and that the decision-maker understands fully-in the light of real expertise coming from the relevant associations and organisations-where that may take him or her. I would suggest a further stage of at least 12 months of a review process within the department in which rejections are analysed a second time around with the help of representatives from disability organisations which are experienced in these matters so that we build up expertise.
Lord McKenzie of Luton: I wonder if the Minister just could deal with this point also. In his response he explained-and I think we would accept-that a lot of testing, engagement and assessment is going on. That is what you would expect of the noble Lord. However, what it does not achieve-and I think the amendment
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Lord Freud: My Lords, I am very sympathetic to the thrust of the noble Lord's point. Noble Lords will be aware that when we designed the universal credit we did it on a trajectory. It is really important that we get the right trajectory on all these introductions. In that context, rather than having a formal trial which has some very specific implications around that process, I take the point about a trajectory of introduction. Indeed, we are looking very hard at the optimum trajectory of introduction.
Baroness Campbell of Surbiton: I thank the Minister for his response. There is a lot in it, so I will deal with each part in turn. I thank other noble Lords for their contribution to this amendment. They have expanded it and given it colour, depth and breadth, and I am very grateful to them for that. I was particularly grateful to the noble Lord, Lord Boswell, for saying that this is a process of discovery. It is a process of discovery, not just for the assessor but for the disabled person.
Noble Lords will understand that this is a very old, tried and tested benefit which has enormously benefited disabled people in making them more emancipated and independent. For me, as an old researcher, not to trial this seems absolutely crazy. I was heartened to hear the Minister's comments with regard to the testing that went on over the summer. I am aware of it and I have tried to get as much information about it as I can. It is still a bit secretive, but I will do my best to get hold of more information. However, it is not a trial. It is not the real thing. The 900 test assessments are just testing out questions and testing the ground, not the life that a person will have to lead after they have been given their award. I still believe that a proper controlled trial is very important for this incredibly complex benefit. It seems simple but what it gives people is complicated.
That takes me to the contribution of the noble Baroness, Lady Howe, who pointed out that the reliance on judgment in relation to people with learning difficulties and people with mental health problems would itself be tested. Again, I am in a bit of a conundrum here as the Government have stated again and again that one of the reasons for reforming this benefit is so that they can better target people with mental health problems and people with learning difficulties, who are not necessarily seen as recipients of disability living allowance as they can walk, talk, leave the house without a wheelchair and move around. I am afraid that the assessors will still see disabled people in terms of their medical condition. Independence will be seen in terms of whether someone can give an affirmative answer to the questions: Can you walk? Can you see? Can you
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I know that the Minister and the Government are very keen to involve disabled people in the process and have done their best to co-produce, but the few people who have been involved are the very people who have come back to me to say, "Jane, we must have a trial, because this is a very big step for both the assessors and disabled people".
For all those reasons, I am keen that we return to the issue of a trial. The trajectory might be a way to slow the process down. The reason why we decided to table the amendment just for first-time claimants, not for those going for their reassessment, was because that would be manageable. There would be another year for those of us who are awaiting this change to look at what is going on and how it would affect current recipients. So it was a practical issue.
For all those reasons, we will need to return to the issue of trialling, analysis and evaluation. In the mean time, I will do my best to get hold of all those testing papers in the depths of the DWP and then, we hope, we will not feel that it is so necessary to have a trial. For now, I beg to withdraw the amendment.
"(d) must disregard aids and adaptations used by a person in assessing their mobility"
Baroness Thomas of Winchester: My Lords, as we all know, at last we have the second draft of the PIP criteria, with the responses to the consultation analysed and with the Government's response. We now have to call aids and adaptations "aids and appliances", although aids and adaptations was the phrase in the consultation. I declare an interest in that I use a huge number of aids and adaptations, as I expect my fellow Peers along this Bench do too. The confusion about the name reflects a bit of confusion about the whole issue in the DWP. I must say that I am not much the wiser having read both "The approach to aids and appliances" on page 32 of the explanatory note and "How aids and appliances should be considered", on page 17, but I start on page 6. Under the heading, "Refining the draft criteria to produce a second draft", the sixth bullet point states:
"To ensure that the assessment does not unfairly penalise individuals who choose to use aids and appliances to improve their independence, the assessment now also considers cheap, widely available aids and appliances which can 'reasonably be expected' to be used, in a similar way to Disability Living Allowance. We also recognise that aids and appliances do not necessarily remove barriers and may attract costs; therefore descriptors which refer to these normally attract a scoring descriptor".
The last thing we need is for those who make the most of every aid and appliance they can find to be unfairly penalised; or for those who do not even try to find
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Many respondents to the consultation, we are told, argued that the use of an aid or an appliance does not necessarily remove a barrier to participation, and they are quite right. We cannot be certain that the Government believe that. They state at paragraph 4.25:
"Some respondents felt that we should not take the use of aids and appliances into account in the assessment. We do not feel that this approach is appropriate as we want entitlement to Personal Independence Payment to be based on an individual's level of participation in society. As such, if individuals are participating well with the help of aids or appliances, we believe that this should be reflected".
I have been wondering, in the circumstances of limited mobility, which aids or appliances would mean that a person did not need extra resources through PIP. A walking stick or frame may help someone to walk about locally on a flat pavement with no steps but may not get them much further. They may still need money to help fund either a car or taxis for longer journeys. Similarly, a guide dog or support dog may help a blind or visually impaired person in their home area but not necessarily in the wider world, as we hear from Mr Phillips who is deafblind. He says:
"I am very concerned about aids and adaptations possibly removing or reducing entitlement. For a start, I have a guide dog. Does this mean because my mobility has been improved in a very discrete specific home area, that my need for the mobility component is reduced? And how would having a long cane affect entitlement?".
"It's almost as if the DWP will reward the loneliest, most stop-at-home isolated disabled person but if you engage with the world, and use your DLA/PIP to facilitate this, then your benefits will be reduced or removed. In short, if you use your DLA/PIP for the purpose for which it is intended, by doing so you might then remove your entitlement. It's a rather worrying and illogical and circular argument".
Then there is the cost of aids and appliances, which can be substantial. Even a walking frame costs upwards of £90, while a mobility scooter can cost more than £2,000 and an electric wheelchair more than £7,000. There are specialist beds and chairs, and hundreds of other appliances to help with daily living. There are stair lifts of various sorts and the cost of an adapted car. Being disabled is extremely expensive and not knowing what the PIP assessor is going to do to take account of aids, appliances and adaptations is extremely worrying.
It must never be overlooked that DLA, and now PIP, is an in-work as well as an out-of-work benefit. Disabled people in work are going to use every aid and
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My reading of the whole aids, adaptations and appliances section is that we may be back where we started-that there will not be any change from what happens now-but I fear that having put several contradictory sentences in the various explanatory documents we have received, the Government may be spreading confusion rather than clarity and decision-makers may end up not interpreting this section as consistently as they should. The DWP must make its position clearer. The crucial question I have for my noble friend is: who will lose out in future under PIP who would now qualify for DLA as a result of using an aid or appliance? I beg to move.
Baroness Wilkins: My Lords, I support this amendment. The range of people who will need aids and adaptations is enormous. One of the groups who are not highlighted in the new criteria is those people who need communication aids, which can be extremely expensive and of which there is, at the moment, a very erratic supply. Whereas a child might be given a communication aid and be able to communicate with the world by using it, after the age when education finishes it becomes a very dodgy business. We are talking about a huge range of people. In the area of mobility, the cost of special shoes is £100. It is such a complicated area that the Government would be extremely wise to think again.
Baroness Campbell of Surbiton: My Lords, I am also extremely supportive of this amendment. It is a government misuse of the social model to withdraw support by saying that if you have a decent wheelchair-adapted house and car your disability goes away. That was quoted to me by a DWP civil servant as a social model assessment. That is exactly why I tabled an amendment on social model assessment-so that we can teach assessors what the social model really means.
The noble Baroness, Lady Thomas, is absolutely right. If I were assessed today, I would probably be taken off DLA. I have my wheelchair, my adapted house, my car and some personal assistance. However the cost of maintaining that is absolutely phenomenal. My disability has gone away; it is away today. I feel equal to all who are here but tonight it might be different. Therefore, I am absolutely in favour of placing this in the Bill. It is a perverse incentive to account for aids by means-testing. It means that people might stop using their electric wheelchairs and adapted cars to get the benefit. They might hide them in the garage or swimming pool. Apparently people put their cars there to hide them from the taxman. As noble Lords can see, I am very supportive of this amendment.
Baroness Grey-Thompson: My Lords, I also support the noble Baroness, Lady Thomas of Winchester. When I first looked at this area, I found it quite
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I declare an interest as a wheelchair user and someone who spends considerable time making sure that I can get the right aids and equipment for me to live as normal a life as possible. As the noble Baroness, Lady Campbell of Surbiton, has said, you try to get as much independence as possible. For me, it is about getting a small chair that means I can fit into every lift in this building, which is a challenge when they are all built into the various chimney stacks; and one that is light enough to push for more than 50 metres, which does not get you very far in your Lordships' House on the very expensive carpet that we have here. I also need to get it in and out of my car. I spend a lot of time making sure that equipment is right for me but I could easily buy a chair with wheels that are 16 inches in diameter, rather than 11 inches, and that weighs 30 kilos instead of four and a half. That would change my impairment considerably but I want to be as independent as possible. Those aids and adaptations make my life easier but they do not stop the patronising attitude that is out there. They do not stop the barriers.
I also want to encourage disabled people to be as fit and healthy as possible but we could be in a situation where we prevent people exercising and doing physical activity because they are penalised for doing so. Again, in my case, I spend several hundred pounds on the right cushion to sit on to ensure that I do not get a pressure sore. A cushion cover for that cushion is around £120. This costs the National Health Service considerably more than it would if I sat on a piece of old, tatty foam. However, if I sit on a piece of old, tatty foam, I might be in a better position to be considered for DLA in the future. It is the same with adaptable housing, and lifts and ramps. We are getting into a very difficult situation here, where the things that should be making disabled people's lives easier, to enable them to contribute, will actually encourage them to think about things in a very different way.
It is very important we get this right. We do not want to push disabled people back into their houses, or ghettoise them. We are in a real danger of doing that if we do not find the right balance, and make sure that disabled people have access to the right equipment to enable them to live as independent lives as possible, and to contribute towards society.
Lord McKenzie of Luton: My Lords, it is with a degree of trepidation that I rise to speak, having just heard those contributions. This issue presents a real conundrum. There is an argument that asks, if the social model is to identify the broader challenges to living that confront disabled people, is it unreasonable to take account of provisions and innovations of aids and appliances that society has developed to help people in their daily living? However, it is easy to state that; as the contributions we have just heard made clear, there is a question of what that will mean in practice.
We could recognise that the use of aids and appliances will not always remove the barriers that people face; we have certainly heard that explained. We should also recognise that not everyone will have access to aids and appliances, or indeed adaptations, which could enhance their quality of life. There is a conundrum that is recognised in the November 2011 Explanatory Note. If account is taken only of aids and appliances that people have and-other things being equal-that produces a low award, there is a potential disincentive to acquire those very aids and appliances that will improve people's lives.
As I understand, what is currently proposed-as the noble Baroness, Lady Thomas, identified, this mirrors the current DLA formulation-is that the assessment will take account of aids and appliances that are normally used and can reasonably be expected to be worn or used. This seems to penalise those who have not yet acquired those aids and appliances. They will have a zero or low award, and not have the money to acquire the facilities. I wonder if it would not be a more reasonable approach, if there is to be some recognition of aids and appliances in the assessment, to take account of what people have initially, with some acknowledgement that, at a reassessment at some stage in the future, you might add those that people might be reasonably expected to use. At least that way, there is a transition.
We know that some aids can be differentiated from others on the basis that in themselves they do not overcome all the issues of mobility. Attaching higher scores for these circumstances-although we do not know what the tariff will be-does not seem unreasonable. The more I have thought about this, and the more contributions I have heard, the more difficult an issue I think it is.
Lord Freud: My Lords, I owe my noble friend Lady Thomas an apology and a clarification. I incorrectly attributed her question about reconsiderations in the previous group to ESA, when of course it applied to PIP. The new provisions on reconsiderations contained in Clause 99 will make a difference, but I suggest that we have a separate debate on that later clause, as it is a wider issue than just in relation to PIP.
As to the matter in hand, I hope that I will now be able to remove confusion, introduce clarity and solve the conundrum posed by the noble Lord, Lord McKenzie. As I have already said, a personal independence payment will contribute towards the increased extra costs that individuals are likely to incur because of their health condition or impairment in order for disabled people to be able to live independently. Under the personal independence payment we want the greatest support to be targeted at those individuals who are most affected by their impairments. This is why we have designed the assessment in the way that we have by looking at people's wider ability to participate in society.
This is why I cannot support the noble Baroness's amendment. Many disabled individuals have a greater level of participation because of the help of aids and appliances. By disregarding the use of aids or appliances
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However, we recognise the noble Baroness's important point that aids and appliances do not eliminate needs or costs and we have sought to deal with it, sensitively and proportionately, throughout the assessment criteria. I wish to make it absolutely clear that we are not assuming that a need has been removed because an aid is being used or that an individual is suddenly able to carry out an activity. This is why, in recognising need, we will be awarding points in the assessment where aids or appliances are needed and why it will be possible for people needing such aids to qualify for the benefit.
Meanwhile, we are dealing with different types of aids in different ways within the draft criteria, recognising that even with these aids the costs and barriers for particular disabled people are greater. For example, in the getting around activity we distinguish between the use of aids or appliances such as sticks and frames and the use of wheelchairs and similar devices.
Picking up on the example used by my noble friend in relation to guide dogs, we do not consider guide dogs to be aids. We have dealt with them separately in the assessment, awarding substantial points to recognise the significant barriers that people with guide dogs face.
While we are seeking to take aids and appliances into account in an appropriate way, we ultimately believe that the greatest support should go to those least able to participate. Someone who can get around with the help of an aid such as a walking stick or frame definitely faces considerable barriers and is likely to have some increased costs. We will seek to recognise this in the assessment by awarding points where aids are needed. For example, in considering activity 2-moving around-the assessment clearly recognises that someone who requires a wheelchair for short distances will get at least 12 points, and someone who requires other aids such as a frame to travel short distances may receive 10 points.
Lord Freud: My Lords, this is a matter to be revealed at a somewhat later date. I am pleased to have provided a timetable of when this matter will become clear. However, the direction of travel is clear: the maximum number of points on that one is 15.
I almost want to call the noble Baroness, Lady Campbell, my noble friend, but I am not allowed to do so. I invite the noble Baroness to join me; I have to find an appropriate enticement so that I can call her my noble friend. However, I must disagree with her concerns. I suggest that she is likely to score very
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I turn to the noble Baroness's second amendment. We are committed to personal independence payment, like disability living allowance, being an extra-costs benefit for disabled people, to spend on whatever they see fit. Our experience of DLA tells us that in some cases the money will go towards the cost and upkeep of specific purchases or activities, such as aids or appliances, or that it may simply become part of the disabled person's budget paying for things as and when they come up, such as the need for shopping deliveries or taxis. The clear intent is that the mobility component should be used to help improve the disabled person's ability to get around but we have no wish to prescribe how they should spend the money.
Given that the purpose of the benefit is to contribute to disability-related costs such as aids and appliances, and that there are other support means available, we do not think we should be paying for aids and appliances in addition to this. Given these comments and the reassurances that I hope I have given on how aids and appliances will be treated in the assessment, I urge the noble Baroness to withdraw her amendments.
Lord McKenzie of Luton: I do not think that the noble Lord has helped me with my conundrum. Is it not the case that the assessment will take account of aids and appliances that people have as well as aids and appliances that it might be reasonable for them to have? If that is the case, in that latter category is that not a double whammy as, other things being equal, people would get a lower assessment and a lower or zero award, and therefore would not have the wherewithal to acquire some of the aids and appliances which would positively improve their lives?
Lord Freud: This is the Catch-22 that a number of noble Lords have pointed out today and in the past, whereby denying oneself an obvious aid is used as a method or device to maintain a higher level of PIP. Clearly, we want to discourage that because we want people to maximise their opportunities in life. The noble Lord referred to a period in which to obtain an aid. However, that drives straight down the other path of starting to multiply the number of reassessments, which we do not want to do. There is a balance to be struck here but most people are able to get aids and appliances. They may not get the four-and-a-half kilo device of the noble Baroness, Lady Grey-Thompson. That is half the weight of my bike.
Baroness Grey-Thompson: My Lords, if I might interject, one of the issues is the cost of aids and equipment. You can buy a fairly okay wheelchair for £250. You can buy a semi-custom fit chair for about £3,500 and you can probably spend £6,000 on a chair. However, some aids and adaptations are very difficult to get, such as a stair lift, which costs £2,500. I tried to
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Lord Freud: Clearly, one has to be absolutely sympathetic to this point. As we all know, levels of equipment can vary hugely. However, the point on this particular issue is that we will look at only readily available, cheap aids and appliances, which can be reasonably used. That will be the definition and it is the definition used today in DLA, so we are effectively porting that approach over. I think I have already asked for the amendment to be withdrawn.
Baroness Thomas of Winchester: My Lords, I think that proves my point about the confusion over this issue. This has been an extremely illuminating debate. I am very grateful to my fellow Peers along this Bench. We have heard about special shoes, small chair-lifts for small chairs, stair lifts, carpets, lifts in the House of Lords, cushions and so on. I fear that the confusion in my mind over how aids and appliances will be taken into consideration has not been entirely removed. I shall read what the Minister said with care. If I were younger, I would go to my assessment having borrowed the electric wheelchair of the noble Baroness, Lady Wilkins. That would be the answer. I could cross my fingers behind my back and say that it was mine, and I would then get all the points that I needed. There are some real problems.
However, I end on a note that the Minister might enjoy. The prize for the best disabled lavatory that I have ever come across goes to one in the Department for Work and Pensions in Caxton House. It should be open to the public for general inspection. I hope my noble friend will pay it an official visit at his convenience. It has an electric control that you press, which means that it goes up and down without any effort on the part of the user. As an example of a brilliant adaptation, it takes the top prize. For the moment, I beg leave to withdraw the amendment.
Baroness Howe of Idlicote: I will speak also to Amendment 86AB in my name and that of the noble Countess, Lady Mar, who sends her sincere apologies. Her absence is due to an unbreakable and important appointment. The amendments would ensure that people with fluctuating conditions, such as multiple sclerosis or some mental health conditions, are not unfairly denied PIP simply because their condition is fluctuating. As noble Lords will be well aware by now, such people may not necessarily have had a particular impairment at every point in the past six months but may well have experienced one at some point in the past six months.
To highlight the unpredictability with which people with fluctuating conditions have to live, I share an example from the MS Society of a man with multiple sclerosis. It highlights the unpredictability of a condition which can fluctuate not only month-to-month and week-to-week, but day-to-day and even hour-to-hour, as the right reverend Prelate mentioned earlier. The man states:
That wording suggests that people with fluctuating conditions will not qualify if they are not consistently ill for the required length of time, regardless of the severity of their condition. I do not know if that is its intended meaning, but given the context in which PIP is being introduced-a desire to save some 20 per cent of the budget, as has been referred to previously-and to reserve PIP for those with the greatest needs, we cannot afford to take that risk.
to allow for fluctuations in conditions and for people with fluctuating conditions to be supported accordingly through qualification for eligibility for PIP. My amendment also addresses the retrospective qualifying PIP period, which is currently set at six months-this has also been referred to. That means that a claimant must have been unwell for at least six months before they can apply for PIP. In my view, six months is too long to wait before receiving financial assistance, when the costs incurred during that time from impairment may be substantial and highly detrimental to an individual's quality of life. My amendment therefore changes the requirement from six to three.
Continuing with an "every time" approach that fails to recognise fluctuations would prevent the PIP assessment from accurately recording the severity and extra cost of a condition. If someone has a severe impairment that occurs only about 50 per cent of the time, they will not meet the qualifying condition; whereas someone who has a moderate impairment for most of the time will meet it. That seems extremely unfair. For example, if someone with MS or severe depression has had a few good days in the past six months and if the relevant ability had been assessed during those good days, it is conceivable that the assessment may determine that the relevant ability is not limited by their condition.
"I use my DLA to help me get around in my car as I am unable to use public transport. It also enables me to communicate via the internet with the council, utility companies etc and to use the internet to buy things I need as I find it hard to talk to people on the phone, face to face or to go to shops. I am unable to wash my clothes as I cannot touch wet clothing so the money helps me to be able to get my clothes cleaned. I have to be able to buy first aid equipment to deal with my self harm but prefer to deal with the injuries myself rather than seek help. DLA gives me a lot of independence that I wouldn't have without it. It is an essential aspect of my income and ability to cope. Without it I have no doubt that my mental health would deteriorate to a level that would leave me either totally dependent on other people or ... leave me hospitalised".
Bipolar is a fluctuating condition and this individual may well have had a few good days during the previous six months. Should we deny him access to PIP? It seems clear to me that that would have a detrimental effect on his health and his ability to manage his condition, let alone the additional cost to the health service. It may affect a person's ability to stay at work if they are employed, stopping people who would otherwise be paying taxes and causing them to rely further on state financial assistance. Ineligibility for PIP for people with fluctuating conditions could also impede their recovery if they are not working.
To sum up, my amendment ensures that we avoid the current situation we have with the work capability assessment. The experience of the WCA offers many fruitful learning points that we would be foolish not to apply to the assessment for PIP. The WCA has consistently failed people with fluctuating conditions, such as mental health problems or multiple sclerosis. The oversimplistic descriptions in the WCA do not allow people to record their fluctuations and, as a result, people lose out. People with severe conditions that occur only some of the time tend to be seen as inherently less impaired than people with moderate conditions that occur all of the time. The PIP assessment should therefore not make that same mistake. My amendment would at least mean that the legislation recognises that conditions occurring most, but not all, of the time can be just as debilitating as conditions that are constant. I beg to move.
Baroness Thomas of Winchester: My Lords, I support the amendment that was powerfully moved by the noble Baroness, Lady Howe. I shall also speak to my Amendment 86A, which enables an eligible person to receive PIP after three months rather than six. The balancing corollary of that amendment is my next amendment, Amendment 86B, which changes the length of time that a person's condition is estimated to last from six to nine months, so the envelope of time in these amendments is not being stretched beyond a year. It is just being differently configured, which fulfils the Government's desire to align PIP with the definition of long-term disability in the Equality Act.
I gather that another simplification which the Government want is to align the waiting time for PIP with attendance allowance. They have cited the approval of several organisations for this change, but is my noble friend really telling us that these organisations would rather people waited for six months for PIP just for the sake of this alignment? This is certainly not my experience.
The reason my amendment seeks to keep the qualifying period to three months is very simple: some conditions of a long-term nature may have a sudden onset; some may not have such a sudden onset but might be able to be diagnosed only several weeks after the onset of symptoms. People with rheumatoid arthritis, for example, which affects about 400,000 people in the UK, are often only given an official diagnosis after six weeks of certain specified symptoms. I mention that disease specifically because arthritis in general forms 18 per cent of the DLA case load; it is at the very top of the list.
Next on the list are mental health conditions at 17 per cent. For anyone suffering from a severe mental health condition, applying for DLA would not be the first thing they think of, and waiting for six months, when PIP comes in, to help with care is a very long time.
There are then those diseases which may have a devastating impact on people immediately, such as a severe stroke or heart attack, a serious accident, amputation or an unexpected diagnosis of cancer which demands challenging treatment straightaway. We may hear a little more about that from the noble Baroness, Lady Morgan. People with any of these conditions may need the extra help which PIP could give comparatively quickly to stop them from falling into debt as they manage their condition with all its ramifications.
This is even more important in these days when local authorities are so overstretched financially that they are becoming reluctant to carry out more than minimal adaptations to people's homes, let alone provide adequate help with caring. Those affected may need to buy for themselves various mobility aids, safety devices and other equipment, or perhaps set up a home alarm system. Their homes may need extra heating; they may have increased laundry requirements; they may need special diets; and they may have to rely on expensive taxis to get to hospital appointments and for other purposes. If the social model of disability means anything at all, then a disabled person is likely to have to rely on taxis if they want to go out and about, particularly during the winter.
Turning to those conditions which are not sudden onset such as my own-adult onset muscular dystrophy-it would be foolish for someone to try to get PIP too early while they are still able to manage their impairments relatively easily because they will almost certainly fail the assessment. On the other hand, if they know that they will have to wait, whatever happens, for six months before receiving any extra resources, they may decide they should at least start the process, particularly if they are beginning to fall into debt with managing their condition.
So when should they start the claim? I understand from what the Minister for Disabled People said in the Public Bill Committee in the Commons that the qualifying period for PIP starts at the point where someone is first entitled to it regardless of whether a claim has been received, and that even a lengthy spell in hospital can be part of the waiting period. That may be a helpful message for someone who has had a stroke or a bad fall, but it is not always possible to know exactly when a person might qualify.
At present, the waiting time for DLA is three months. By changing it to six months, the Government have said that this is not about saving money but about the right benefit going to the right people, or words to that effect. Presumably, by doubling the waiting time, they believe that three months is too short a time to be able to assess someone's condition. They are possibly thinking that someone who has suffered, for example, quite a severe stroke might apply straightaway for PIP but, after six months, might be much better and able to manage the impairments they still have. However, looking at the case load for DLA, only 3 per cent of claimants have stroke-related conditions. This is presumably because the majority of stroke patients are past retirement age and thus past qualifying for the first time for DLA.
If PIP is to be an in-work as well as an out-of-work benefit, which it is, surely it is better to allow a person to claim the benefit after three months, not six, as it is likely to help them get back to work and to participate once again in society more quickly, for example by travelling to work by taxi or by taking a cab to the station.
The table of conditions that people who claim DLA are diagnosed with is very illuminating. People with both osteo- and rheumatoid arthritis, which as I said come top of the list, are very unlikely to get better after three months. Those with stroke-related conditions and malignant diseases are each just 3 per cent of the total. It is not as though a large number of DLA claimants with these conditions are trying to claim after their condition has improved. In fact, the table shows that the Government's argument about a person's condition not being stable after three months does not really stack up. I read from the table that most people almost certainly do not apply for DLA at present until they really feel they have to.
To sum up, six months is a long time to wait for extra resources if a person has had a diagnosis of a long-term severe condition. The Minister in another place talked about a person's condition settling down. However, for many of us our conditions never settle down-they go on progressing. If the Government are
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If the Government insist on the six-month waiting time for all applicants, I fear it will be understood to be about saving money in the short term in the hope that people will be put off from applying. I am encouraged to hear that my noble friend and his fellow Ministers are still listening and I hope this means they are hearing all the arguments for changing the qualifying period back from six months to three.
Baroness Morgan of Drefelin: My Lords, this is a very important debate. I support the idea of keeping the qualifying period for PIP at three months. I also hope this debate will look at the idea of the prospective period moving from six to nine months if the Minister sees that as an appropriate practical way of dealing with the Government's intention to align the qualification period for PIP with the Equality Act, as I understand it.
I, like many, am extremely concerned that the proposals here will have a devastating impact on disabled people, especially those with sudden-onset conditions such as cancer. Cancer patients often see sudden changes in their household income combined with significant cost escalation on diagnosis. This can make cancer patients particularly vulnerable to financial difficulties and in need of immediate financial support.
Why do people with sudden-onset conditions need support immediately? We know that cancer treatment and its debilitating effects can often begin very quickly after diagnosis, as the noble Baroness, Lady Thomas, has already explained. The associated support needs arising from that treatment are often immediate and, importantly, the first six months can be the period when extra costs are at their greatest as people try to adjust their outgoings to their reduced income. Research by Macmillan found that 80 per cent of cancer patients who experienced increased costs reported that they were greatest in the first six months.
Having to wait for three months under the current disability living allowance is already difficult for people with cancer. Doubling this to six months under PIP will be devastating. Seventy per cent of cancer patients' households suffer loss of income and/or increased cost as a direct result of their cancer. Without support for the additional costs, which are faced immediately following the sudden onset of a physical or mental condition, people will face increased debt and difficulty in managing debts that they may already have. There are cases of house repossession and real hardship.
What are people's needs, which can be so pronounced, in the first six months following a cancer diagnosis? We have heard about the cost of travel, including parking costs for hospital appointments. That is an obvious one. Nearly half of all cancer patients face increased travel costs and around 41 per cent face increased hospital parking costs following diagnosis, as Macmillan's research has shown. On average, someone with cancer makes 53 trips to hospital, so that is not
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Low immunity often forces patients to rely on taxis rather than use public transport. I will say more about that in a moment. New clothes are another additional cost. That may sound like a trivial point but it is not for many people with cancer. They can experience dramatic weight loss or weight gain. One cancer patient told Macmillan that,
There are extra costs because of fuel. I am advised that this takes two forms: the increased need for heating and the increased need for the use of appliances such as washing machines-due to profuse sweating and hygiene requirements-and dishwashers. So there are increases to fuel bills in addition to the ones that everyone knows about anyway. One cancer patient explained to Macmillan that,
That is a very basic problem to have to deal with. Seventy-three per cent of cancer patients who are undergoing active treatment use more fuel than they did previously. Then there is the question of aids and adaptations such as wigs, shoe inserts and special diets, which I shall mention again in a minute. People experience real costs following diagnosis.
It has been suggested that people with cancer might have access to other sources of income and support. This is not always the case and we cannot assume it. Some people with cancer will not have the access to alternative sources of the financial support that they need for the first six months of their condition. For many, this will result in real financial difficulty, so we cannot assume that that will cover the problem.
Extending the qualifying period will also have an impact on debt and financial problems, which we already know are real for many people. That needs to be taken into account. Therefore, I want to ask the Minister what assessment the Government have made of the likely impact of extending the qualifying period to six months on the likelihood of more disabled people falling into debt and poverty.
We have heard about the impact of extending the qualifying period from the point of view of those with intermittent conditions and so on. We have heard many personal stories in this Committee. While Macmillan gave me some very good case studies, I thought it would be most interesting to share my recent experience, which came from my niece, who in April 2010 was diagnosed with grade 4 Hodgkin's lymphoma following a very sudden and serious illness. She immediately experienced severe weight loss and loss of appetite because of the disease process playing havoc with her normal taste. She had terrible issues with night sweats, which brought with them all the costs of buying new clothes and bedding and using an awful lot of fuel, as I have mentioned, to deal with the daily washing of bedding. Then there was the impact of a neutropenic diet caused by the effects of heavy-duty chemotherapy.
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Following on from that, there is the susceptibility to infection caused by the very important but aggressive treatment; not being able to use public transport; not being able to drive because of fatigue. All of this happened in the first couple of months following diagnosis. She had to attend hospital two or three times a week and had radiotherapy at three months, every day for a month.
Now, 18 months on, she is still having chemotherapy and, after a failed stem cell transplant and a number of novel antibody treatments, she is now preparing for a second transplant, but her spirits are very good. She said to me that DLA was absolutely vital to her coping early on, following her diagnosis, because of the huge additional costs that she experienced, but particularly because of the mobility component that she accessed. That gave her a blue badge, a congestion charge exemption, a car tax exemption, a taxi card and a disabled travelcard. All that because of DLA. That in itself was able to save her hundreds of pounds a month in taxi fares.
I want to understand better than I do now what the rationale is regarding the Equality Act because we know from that Act that people with cancer are deemed to be disabled at the point of diagnosis. If the whole drive here is to align with the Equality Act, then that does not quite fit. I am not suggesting that we would expect people with cancer to be able to access PIP at the point of diagnosis, but I do not see how that rationale works here. I look forward to the Minister's response.
Baroness Grey-Thompson: My Lords, I support the noble Baroness, Lady Thomas of Winchester, in Amendment 86A, and I believe she has covered the amendment very clearly. I also find the qualifying period worrying. As the noble Baroness, Lady Morgan of Drefelin, has said, the first months are often the period when extra costs are at their greatest, and just as people are trying to adjust their outgoings, they are also adjusting to the impairment or illness.
I do not believe that it is the case that they will be able to receive support elsewhere. Social care support may be available, but that is means-tested and has its own application and assessment process, which we have debated quite a lot this afternoon. Support from the NHS can be very limited and not immediate and I do not think we should assume that appropriate help is that easy to find.
In Committee in another place, the Minister for Disabled People stated that this proposal was not being driven by the need to make significant savings, so why are we making this change? It has been argued that, for example, in the case of someone who has had a stroke, it may not be clear at three months what their long-term needs may be, and that may also be true at
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Baroness Lister of Burtersett: My Lords, I support the amendments which seek to revert to the existing qualifying period of three months. The noble Baroness, Lady Thomas of Winchester, said that six months is a long time to wait for extra resources, and we have heard from a number of noble Lords about the significant additional costs which can be incurred during this period.
However, there is a further twist in the tale-the benefit cap-which we will be discussing next week. PIP exempts people from the benefit cap but, of course, if you cannot qualify for PIP for six months then you would not only have to wait for additional resources but could find that your own resources are being significantly depleted during this period. This is very worrying. Can the Minister say whether any estimate has been made of the number of people who may be caught in this way? I suspect that it is not a large number, but one person is one person too many. It could be potentially very frightening for people to find that they might have to face this horrible benefit cap.
I hope that the Minister will accept the amendment. If not, and the six-month period goes ahead, a perhaps minimalist way of addressing the question-although it does not really address it-is that someone who qualifies after six months should have the money backdated to cover what they lost through the benefit cap.
Baroness Campbell of Surbiton: My Lords, I support the amendment. I hate the term "alignment". I worried about it enormously when it was used by the Government in connection with the proposal that mobility allowance should be removed from people in residential care homes because they wanted to align it with hospitals. We are now back to "alignment" again.
One of the major problems that nurses and doctors in specialist units face in trying to discharge their patients with brain injury or the onset of MS, which causes vast deterioration, is getting their support sorted out so that they can leave the hospital. DLA with a time limit of three months is cited as being difficult to get into now, so raising it to six months is wrong. We forget that people do not on day one think of their long-term disability-whether that be a spinal injury, a brain injury or something that is sudden and quick-and say, "Ah, I must put in my DLA request now so that I will get it in six months' time". That just does not happen.
This is another delay for people who find themselves in an appalling situation, in a crisis, and having to face even further barriers to the support that can give them some independence, enable them to get back into the community and return to their families as soon as possible. The three-month eligibility period should remain. The six-month period will cause more problems.
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Lord McKenzie of Luton: My Lords, we have had a powerful set of contributions on the amendments. I hope that the Minister will have ringing in his ears the important question: if it is not about cost savings, why on earth are the Government seeking to do this? We have heard powerful presentations, especially from my noble friend Lady Morgan, about the costs that confront people. My noble friend Lady Lister has just made an extremely important point about the interrelation of this with the benefit, as well as the other challenges that come with the proposals.
The amendments are intended to deal, first, with the issue of fluctuating conditions; and, secondly, to alter the assessment period for access to personal independence payments. Looking first at fluctuating conditions, the amendments would ensure that those whose physical or mental condition limits their ability for the majority of the time, rather than continuously, would still be eligible. As drafted, the Bill suggests that people with fluctuating conditions would not qualify if they are not consistently ill for the required length of time, regardless of the severity of their condition. That is the case with the current work capability assessment, which, as we know, consistently fails people with fluctuating conditions such as mental health problems or multiple sclerosis.
The new draft criteria published on Friday contain some welcome recognition of the need to ensure that people with fluctuating conditions are not disadvantaged under the PIP assessment, so that where someone needs more than one descriptor within an activity, the time period can be counted cumulatively towards the thresholds of 50 per cent of days needed to satisfy one descriptor. However, what evidence is there to show that the method of taking account of the needs of people with fluctuating conditions will be both accurate and fair while meeting the aim of not disadvantaging those people during the assessment?
The Bill will extend the qualifying period before claimants can receive PIP from the current three months under DLA to six months. People will continue to have to demonstrate that their impairment or health condition will last through a further six months to qualify. That increases the total period for which individuals will have to demonstrate need from nine months to one year. The amendments would retain the one-year period, but split it so that claimants will have a three-month waiting period only but will have to demonstrate that their impairment is likely to last for an additional nine months. We support the amendments.
A wide range of organisations have expressed their concerns about that change. As the Disability Benefits Consortium put it, DLA eligibility is based on individuals experiencing additional costs as a consequence of their impairment or health condition.
"Making people wait longer will place further burdens on those adjusting to sudden onset conditions such as stroke, or people who experience the immediate debilitating effects of treatment such as cancer"-
If applied to disabled children, it will also place increased pressure on families trying to adjust to their child's impairment or health needs. The Government have stated that that change will not bring about any significant savings, but we believe that it will have a significant impact on disabled people. As we have heard, the Equality and Human Rights Commission has also raised concerns in this area, stating that the change from a three to a six-month waiting period may also undermine the Government's stated aim to support disabled people into work and enable them to remain in work. Further, newly disabled people without support for the six months may not be able to continue in their current employment or be able to find suitable alternatives.
"For people with cancer, where treatment and its debilitating effects can begin very quickly after diagnosis, support needs are often immediate. Macmillan believes people with sudden-onset, long-term conditions should be able to claim support as soon as their support needs arise. We are flatly opposed to increasing the qualifying period from three to six months".
As we have heard, the Government's policy briefing note for this proposal gives the justification for this change that of aligning the definition of disability with that used in attendance allowance, and with that,
The guidance in the Equality Act in fact specifies that someone is to be considered as having a disability if they have an impairment that will last at least 12 months, or for the rest of their life, but this says nothing about how long somebody should have to wait before they are assessed as having this disability.
"While we acknowledge that some impairments or conditions may appear long-term at their outset, and that additional costs may arise as a result, this may not always be the case. Where disability-related costs do arise early on, for instance as a result of having to make frequent hospital visits for treatment, additional support mechanisms provide an element of coverage before the qualifying period is satisfied, for example through the NHS travel costs scheme or other social security benefits".
However, as Macmillan states, these types of support are usually means tested, unlike disability living allowance-or PIP, which is intended to meet the additional costs that arise through a disability for somebody, whatever their income level. Will the Minister please list the types of support that the Government think will be available to people in this situation, and which will be available to those people who have built up savings which exclude them from normal means-tested benefits? Can the Minister say whether any additional cost would be expected from changing from a six-month waiting period and a six-month expected disability to a three-month waiting period and a nine-month expected disability? If this would not be an additional cost, what on earth is the rationale for asking people to wait an additional three months in order to receive vital support?
Lord Freud: My Lords, I thank noble Lords for tabling these amendments and welcome the opportunity to respond on this important feature of personal independence payment. The required period condition has given rise to a great deal of considered and reasoned debate today. The debate has also been informed by the not inconsiderable assistance of briefing provided by the likes of Macmillan Cancer Support and the Disability Benefits Consortium, as well as many others over the past few months.
The amendments seek primarily to shorten the qualifying period before the personal independence payment can be paid. They also increase the onward period over which someone must be expected to satisfy the conditions of entitlement and modify how someone can satisfy the required period condition. Taken together, I was pleased to see that Amendments 86A to D preserve the overall required period condition of 12 months. I therefore welcome the fact that these amendments explicitly accept the principle that personal independence payment should be paid only to people whose needs arise from long-term conditions. This is a fundamental aim of personal independence payment and ties our definition of long-term disability in with that used in the Equality Act.
Under disability living allowance, people currently have to satisfy a three-month qualifying period and a six-month prospective test. These rules were put in place when the old attendance allowance and mobility allowance were merged to form DLA in 1992. However, for personal independence payment we are designing a new benefit; one fit for the 21st century, so it is only right that we looked at what it is the most appropriate length of the qualifying period and prospective test.
I know how much these changes to the qualifying period have worried certain groups of disabled people and their representatives, most particularly those representing people who have been diagnosed with cancer or who have experienced sudden-onset conditions. Noble Lords may be interested to learn that the changes found support in our consultation, in particular the link with the Equality Act definition.
Perhaps it may help to reassure noble Lords further if I set out that the required period condition is not a money-saving measure, nor is it meant to deny disabled people support where the impact of their condition is long-term. This is about having a mechanism which
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Where there are immediate and ongoing costs which can cause financial difficulties, or have an effect on someone's ability to participate fully so that their levels of independence may begin to suffer, there is a range of means-tested and non-means-tested support to help people through some of the shorter-term burdens, both financial and practical. I acknowledge that this help may not be available to all, but all provision has to be dictated by balancing need and an individual's capacity to meet it from their own resources.
Baroness Hollis of Heigham: Can the noble Lord give us examples of that? Like others, I have nursed people through cancer-three people, including my late husband-and what we need is what does not exist, which is an upfront grant to cover costs until the condition has stabilised. During those six months, in his situation, I was all right, as I could throw money at it, but I noticed that in the waiting rooms for chemo and radio, then back to chemo and then to radio, a constant theme for the people there-some were feisty, some were broken, some were defeated and some were coping-was the huge financial pressures, particularly on those who did not have an adequate income or adequate family support to allow them to cope. If the Minister cannot move in this direction, he has to come up with something that will do the same job.
Lord Freud: My Lords, among the elements available in the shorter term are healthcare, travel costs, free prescriptions or aids and appliances provided by the NHS or the local authority. Following the request by the noble Lord, Lord McKenzie, it may be easier for me to write with a list of particular supports.
Baroness Morgan of Drefelin: If the Minister is going to write, would he also look at explaining how many of those are dependent on local authority provision? Much of the kind of help that he is talking about is sometimes dependent on having DLA.
Lord Boswell of Aynho: Picking up the point made by the noble Baroness, Lady Lister, perhaps my noble friend could also indicate any of those benefits which might be susceptible to the benefit cap under the proposals of this legislation.
Lord Freud: I will do that. However, it would be preferable to look at that issue in the context of the benefit cap rather than this context. We will be looking at that soon-I was hoping to say very soon.
I will go through those social security benefits. I should mention in this context of additional support-I pay tribute to Macmillan for its highly motivated campaign-that parking charges at hospitals are increasingly being waived for people attending treatment who have been diagnosed with cancer. I appreciate
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I have also listened with interest to the arguments presented in support of those who suffer sudden-onset conditions such as stroke or traumatic injury. While the immediate effects of such a sudden-onset condition may be highly debilitating, it is important that we consider the role that the National Health Service plays. Following a sudden-onset condition, it is doctors and nurses who will be caring, stabilising and treating the individual while their condition remains acute, and it is the hospital which will be responsible for the individual's disability-related needs in their entirety during treatment.
Baroness Morgan of Drefelin: I am sorry to interrupt the Minister again. Does he agree that one of the thrusts of modern health care-particularly in cancer care, where I have an interest-is to try to keep people at home for as long as possible and not requiring hospitalisation? One of the brilliant aspects of the DLA that I was trying to describe means that determined, independent people going through tough treatment can stay at home, saving the NHS thousands and thousands of pounds on hotel fees. We have to look at this issue in a joined up way.
Lord Freud: I am trying to make the point that it is the responsibility of the NHS to deal with rehabilitation and treatment issues. It is not the function of DLA to do that, nor will it be the function of PIP. It is a different support mechanism. It may be that noble Lords would like to put in a particular support function in those circumstances, but it is not what PIP is meant to be.
Baroness Morgan of Drefelin: In that case, perhaps I may ask another question. If this is not what it is for, we need to understand what the implications are. People who have DLA now and are being treated for cancer-to give an example of a sudden-onset condition-are utilising the benefit in that way. As I understand it, DLA is meant to be used in a way decided by the client. It is important for people to keep their independence-to stay at home and look after themselves-and to stay positive. Surely we want to encourage that.
I understand the Minister says that that is not the purpose of the benefit, but I am confused: it is a product of the benefit which is of benefit to all of us. If it is being changed, we need to understand the implications and the evidence of what the knock-on effects might be elsewhere in the system.
Lord Freud: Let me go on a little further and try to pull this issue back. Noble Lords have said that, in practice, DLA is being used in a slightly different way to the long-term intention, and that that is tied to three months as opposed to six months. I have said that it is not a matter of money but of coherence. I have heard many strong views expressed in Committee about noble Lords' discomfort with the move to six months and so I will take this matter back-that might be a slight overstatement-and look very closely at what we are hearing, not only from here but from elsewhere. This is not one-way traffic; some people are more concerned that if you go to an earlier assessment it implies that you will have more reassessments, which some groups dislike rather more. So it is not all one-way traffic for people who are affected.
Baroness Lister of Burtersett: I apologise for interrupting the noble Lord. I am sure that the Committee is extremely pleased to hear him say that he will take this away. I hear what he says about it not being one-way traffic but, given that the Minister is writing to the Committee already on this issue, it might be helpful if he could list the organisations which are supporting the move to six months and those organisations who are against it, so that the Committee can weigh the balance of opinion for itself.
As I said, it is not a cost matter. It is a matter where people's sensitivities have been very clearly expressed. We will go away to look at that very, very closely. Some of the observations in this room today will help us in that consideration.
I do not know if there are any other points I really need to make. I just reassure or assure the noble Baroness, Lady Howe, that the required-period condition will not be a snapshot in time. The legislation makes that quite clear by talking about the likelihood of the assessment being met on any particular day. It means that if someone is likely to meet the conditions for the majority of the time, they can safely be taken as being more likely than not to meet them than if we were just randomly to pick a day.
The other issue I need just to touch on, which is often misunderstood, is that during people's stay in hospital, when the cost of their disability-related needs are being met, individuals will already be fulfilling the required-period condition for personal independence payment. The noble Baroness, Lady Campbell, was concerned that filling in your DLA or PIP assessment form was not the first thing on your mind.
That means that when someone is able to leave hospital, perhaps with a care plan in place and further rehabilitation scheduled, they may well have satisfied some or even all of the qualifying period. That currently exists for DLA and is often misunderstood, with people
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Baroness Howe of Idlicote: My Lords, it has certainly been a very interesting series of questions-and some answers-with different issues under the different amendments within this group. I will certainly want to reflect on what has been said about my amendments, as well as on some of the issues that have arisen, as to whether they have been as satisfactorily answered as they could be.
The noble Baroness, Lady Morgan, made the point about parking costs and so on. We know that some hospitals have begun to make exceptions, but it is fairly appalling that it is going on at all. We would all like to know how widespread is the removal of the requirement to pay for parking if you are going in for a number of cancer treatments.
My other point is that we are not just talking about the actual sufferer but the effect on the entire family-the husband or wife who may very well be put in a position where their own finances are being appallingly hit. There is a lot more that we are going to want to talk about, perhaps on Report, but perhaps by then there will be rather clearer instructions that we will all be able to say meet our points. I hope so. Perhaps I am being a bit over optimistic. Under those circumstances I will, for the moment, withdraw my amendment.
Baroness Grey-Thompson: I beg to move Amendment 86DZA standing in the name of the noble Baroness, Lady Wilkins. The noble Baroness apologises, but she is unable to be present as she has an amendment to the Health and Social Care Bill in the Chamber.
This amendment is designed to ensure that disabled people receiving the new benefit-whether it is the personal independence payment or DLCA-before pensionable age are able to continue accessing support after they reach that age. I declare an interest in that I am a recipient of DLA.
This amendment would maintain the requirement that disabled people meet eligibility criteria, but would offer a significant reassurance to disabled people that their support will not diminish with age. Sir Bert Massie, as cited in Monday's debate, has suggested that disabled people, "Join us or die", given that the incidence of impairments and experience of health conditions increase with age, and that more than half of disabled people develop their impairment or health condition in adult life.
The older we get, the more we need support with the higher cost of living, and with the health conditions and/or impairments that life brings. DLA currently provides vital support to 845,000 disabled people over pensionable age in meeting their higher essential costs of living. This support offers a significant lifeline, and was planned for in the original legislation when DLA was introduced by the noble Lord, Lord Newton, and others, in the Social Security Contributions and Benefits Act 1992. That Act specifically refers to the age limit not applying to a DLA award made before someone attains the upper age limit. However, the Welfare Reform Bill does not make the same guarantee for the new benefit.
Clause 81 allows for regulations to be made to allow for exemptions, and the Explanatory Notes to the Bill indicate that allowing PIP to continue to be received after someone reaches pension age could be such an exemption. This would be welcomed, but leaves a gap in clarity which needs urgently to be addressed. I am aware that the Government believe that this issue should be covered by regulations. This was not the case in the original 1992 legislation, and I am unconvinced that it should be the case now.
My concern is due in part to the Public Bill Committee stage in the other place, where the Minister for Disabled People stated that the Government wanted entitlement to be addressed in regulations, to allow for flexibility. Such flexibility could include altering this entitlement in the future, and denying support to disabled people reaching pensionable age. It would offer a significant boost in confidence for many disabled people to receive reassurance during the passage of the Bill that their support will not be withdrawn at pensionable age.
Disability Alliance, and many other charities, are being approached regularly by disabled people worried about what the current plan will mean when they reach pensionable age, and whether support will end. Readers of Disability Now will also have seen this issue raised by other concerned disabled people and their families. This amendment would clarify the position and put many minds at rest.
The Dilnot Commission highlighted the pivotal role that DLA plays in preventing high-level needs escalating. This is a particularly important issue for people who are in receipt of the mobility component of DLA, as there is no equivalent to this under attendance allowance-the current disability benefit available to
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I am unsure whether the Government intend to provide an analysis of how losing DLA at pensionable age might lead to greater NHS and council expenditure being required. This would be relevant whether the Government alter entitlement now or under future regulations. I hope that the Government's intention is to retain benefit entitlement after pensionable age. The amendment merely serves to add clarity to the situation. There are currently more than 990,000 disabled people between the ages of 50 and 64 who receive DLA. This clearly demonstrates the need for clarity now. The current equality impact assessment of the Welfare Reform Bill states that PIP will continue to be available to people over pensionable age. I hope that this amendment could confirm this approach in the Bill. It should be welcomed by the Government. I beg to move.
Lord McKenzie of Luton: My Lords, I can be brief on this. The noble Baroness has covered pretty much every point that I had in my script. We support this and the proposition that it should be in the Bill.
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