Submission by organisations of and for visually impaired ...



Submission by organisations of and for visually impaired people to the Department for Work & Pensions consultation on aids and appliances and the daily living component of Personal Independence Payment Submission by organisations of and for visually impaired people to the Department for Work & Pensions consultation on aids and appliances and the daily living component of Personal Independence Payment29 January 20161. Introduction1.1 This submission is made jointly by the following organisations:Action for Blind PeopleBlind Veterans UKDeafblind UKGuide DogsNational Federation of the BlindRoyal London Society for Blind PeopleRoyal National Institute of Blind PeopleSenseThomas Pocklington TrustVisionary1.2 Between us we reflect the views and experiences of thousands of blind (severely sight impaired) and partially sighted (sight impaired) people, their relatives and supporters. Personal Independence Payment (PIP) is an important part of the income of many of them, so we are pleased to have the opportunity to respond to this consultation. 1.3 The consultation concerns the daily living component of PIP and the role of aids and appliances in determining entitlement. Most PIP criteria (“descriptors”) provide for two points where the claimant cannot complete an activity without the use of an aid or appliance.1.4 It is necessary to be awarded at least eight points to qualify for the daily living component of PIP (the enhanced rate requires 12 points) and some claimants achieve this substantially or entirely through the “aids and appliances” route. In the following paragraphs, we make a few introductory observations before commenting on the specific proposals in the consultation document.1.5 The Department for Work and Pensions (DWP) sees this route to qualification as a problem, somehow indicating a low level of extra costs of disability among these claimants. We do not see it as a problem – it merely reflects the range of activities which their disability affects.1.6 The DWP consultation document (see note 1 at the end of this submission) makes much of the independent review of PIP (see note 2) conducted by Paul Gray (Chair of the Social Security Advisory Committee) – commenting that:“....as highlighted by the first independent review.... this policy does not appear to be working as intended”. 1.7 However, Paul Gray’s report, far from “highlighting” this conclusion, is quite measured in its language, observing (p. 61) that: “....there are indications that points may be being awarded on the basis of claimants choosing to have acquired the items.... rather than needing them. Anecdotally, the Review heard from some case managers who felt they saw a higher than expected number of assessment reports where aids and appliances were used in justifications. Due to limitations in available published data, the Review has not been able to test this”.1.8 We are clear that blind and partially sighted people use aids and appliances because they need them and that these are able to act as a proxy for a range of extra costs (see below). The anecdotal concerns reported by Paul Gray seem to be more about standards of decision making -- the difference is between needing to use an aid due to disability and “choosing” to use an aid for mere convenience. A more robust and enquiring approach to evidence gathering and decision making could deal with that. It is quite possible for decision makers to decide that although a claimant may use an aid, no points will be awarded because it is not reasonably required as a result of disability.1.9 The DWP nevertheless claims to have empirical evidence of a low level of extra costs among many PIP claimants and cites a small survey of 105 cases. This is obviously a very limited sample and it is far from clear how the DWP drew from it the conclusions that it did. At regional consultative events, RNIB has asked about the representation of blind and partially sighted people in the sample and has not been able to discover this. Certainly, the DWP view runs contrary to our organisations’ experience of the additional daily living costs faced by blind and partially sighted people – such as extra heating due to being at home more; and paying for help with shopping, cleaning, gardening, decorating and so on (see section 10 below).1.10 It is important to be clear that the use of aids and appliances is intended to act as a proxy for extra costs that a person with disabilities would be expected to incur. In places, the consultation document recognises this; but elsewhere seems to suggest that the purpose of the benefit is to purchase the aids and appliances in question. It is not – it is to help meet the extra costs of disability. This is a significant confusion that needs to be weeded out of the debate.1.11 Blind and partially sighted people potentially use a number of aids and appliances in their daily lives in order to retain independence. For example:magnifying glass;tablet – for magnification and scan and read functions;desktop CCTV;smart phones with voice control;assistive computer software (magnification and speech);talking scanner;talking newspapers, talking books and equipment to play them;large keypad telephone;talking microwave;tactile microwave jugs;talking cooker timer;talking kitchen and bathroom scales;adapted chopping board, finger guard, electric chopper; food processor;high-contrast and non-slip cutlery;brightly-coloured containers;easy-to-pour kettle;liquid level indicator;tactile “bump-ons” (raised stickers);audio labelling machine (for shopping and other items);shower seat, grab rails;non-slip mats;talking watch;talking clock; talking thermometer;task lighting;Braille machine and hand frame;Braille diary.1.12 Blind and partially sighted people who use aids and appliances would currently potentially score points under activities1, 2, 3, 4, 6 and 8 in the PIP assessment. Deafblind people will also score on activity 7 for using a hearing aid. If the scores for these activities were removed, reduced or substituted with an alternative payment, the majority of sight impaired and many severely sight impaired people would be affected, falling to the lower daily living rate or losing it altogether.1.13 For activities 1, 2, 3, 4 and 6 claimants might score points under the “needs supervision” descriptors rather than the “aid or appliance” descriptors. However, there is a real risk that decision makers and tribunals will decide that people could use an aid or appliance rather than relying upon supervision to complete a task – and so lose these points.1.14 Activity 8 is about reading. Under these proposals, the only way visually impaired people could escape disadvantage under this activity would be if they cannot read at all. Therefore people who need to use aids or appliances for significant magnification or other support would potentially receive no daily living award of PIP. 1.15 There would be a similar issue for deafblind people who are able to hear speech when using hearing aids and have enough vision to read with a magnifier. Under current criteria they only score two points on activity 7 – "communicating verbally" – and two points for reading. They can accumulate the rest by scoring on aids and appliances descriptors for other activities, such as preparing food, dressing and undressing, managing medication etc.1.16 If the use of aids and appliances were to become a disadvantage – to be avoided, as claimants sought to qualify under other descriptors – claimants may be discouraged from using aids and appliances that increase their ability to live independently. This was a point recognised in the policy discussions leading to the establishment of PIP, the avoidance of such disincentives being seen as one of the advantages of employing aids and appliances as a proxy for disability leading to extra costs.1.17 To develop this last point in the context of employment: the use of aids and appliances (especially those relating to information and communications technology) allows some people to gain the skills they need to engage or re-engage with the world of work. To discourage people, through financial disincentives, from using aids and appliances, risks inhibiting their skill base.1.18 The consultation document puts forward five options:1. A lump sum payment for claimants who meet or exceed the eligibility point threshold for the daily living component but score all of their points from aids and appliances. The value of this lump sum could be less than the cumulative value of the equivalent monthly payments. It could be discretionary and could be restricted, for example through the use of vouchers. It would not act as a passport to any other benefit or benefit premium and would not exempt claimants from the benefit cap. Claimants scoring at least some points from other descriptors would be paid at the relevant weekly rate, as now.2. A monthly payment below the equivalent weekly rate for claimants who meet or exceed the eligibility point threshold for the daily living component, at either rate, but score all of their points from aids and appliances. This payment would not act as a passport to any other benefit or benefit premium and would not exempt claimants from the benefit cap. Claimants scoring at least some points from other descriptors would be paid at the existing weekly rate.3. A new condition of entitlement that claimants must score some points from a descriptor that does not relate to aids and appliances. This would mean claimants would not be entitled to the daily living component if they scored all of their points from aids and appliances irrespective of whether they met or exceeded the point threshold for either rate. Claimants scoring at least some points from other descriptors would be paid at the relevant weekly rate, as now. 4. To change the definition of aids and appliances in relation to the relevant daily living activities to exclude items that are a poor indicator of additional cost and need. These items could be distinguished by reference to whether they are available at low or no cost and/ or whether they are commonly used by non-disabled people for the same purpose. Claimants who used aids and appliances that were a good indicator of extra costs would be paid at the relevant weekly rate, as now.5. Halving the number of points awarded from two to one for the use of aids and appliances in relation to some or all daily living activities. Claimants scoring at least some of their points from aids and appliances could lose entitlement to their current award rate. Claimants scoring all of their points from other descriptors would be paid at the relevant weekly rate, as now.1.19 We set out below our observations in respect of each of these options in relation to blind and partially sighted people, but would not wish to see the debate structured around a comparison between them, as it is clear to us that none of them is remotely satisfactory. No doubt PIP is not perfect, but in this respect (the role of aids and appliances) it is not broken and so does not need to be fixed.2. Consultation question 1: what are your views on the current system and its advantages and disadvantages compared to options one, two, three, four and five?2.1 The current system entails a firm set of entitlements to a regular income to help meet the extra costs of disability, with aids and appliances employed in a number of cases as a proxy for those extra costs.2.2 The need to use an aid or appliance should not be assumed to be an indication of a low level of disability, or of low ongoing disability-related extra costs, or as removing the obstacles that visually impaired people face.2.3 The need to use an aid or appliance was designed as part of the PIP assessment process to be a proxy for having a level of disability not necessarily covered by the ten daily living activities.The principle of using aids and appliances as a proxy measure of disability was important to the overall design of PIP. The ten listed daily living activities do not cover all the areas of difficulty a blind or partially sighted person may have in daily living (for example, keeping the house clean or shopping) so the aids and appliances descriptors were designed as a way to recognise and account for impairments and difficulties that may affect activities not specifically included in PIP. 2.4 Many visually impaired people receive PIP on the basis of their need for aids and appliances. Visually impaired people who have some usable sight may not score points via descriptor 8e (cannot read signs, symbols or words at all) - but may score via 8b for their use of an aid, such as a magnifier. If that person is also assessed as needing an aid in all the other relevant activities, such as washing, dressing, managing medication, they will be at risk of losing entitlement to the daily living PIP component completely under all five of the DWP's proposed options. The same would apply to deafblind people who score two points on the reading and communicating verbally activities. 2.5 Receipt of PIP also operates as a “passport” for Carer’s Allowance and relevant premiums in various means-tested benefits. This is a useful mechanism for linking these different elements of the benefit system. Loss of PIP or the substitution of a “downgraded” version under the DWP proposals would remove such passporting, with potentially very serious financial consequences for claimants, their families and carers. The loss would be ?55.10 per week, at current benefit rates, for those only in receipt of the lower PIP daily living rate (see note 3) – but the passporting effect means that households could lose two or three times this amount, depending on their particular circumstances.3. Consultation question 2: what are your views on the advantages and disadvantages of option one compared to the current system and options two, three, four and five?3.1 We see no advantages to option 1 (a lump sum payment for claimants who meet or exceed the eligibility point threshold for the daily living component, but score all of their points from aids and appliances) compared with the current system.3.2 The idea of a lump sum seems (as does the reference to vouchers) to derive from the mistaken idea that the purpose of PIP is to purchase aids and appliances – rather than to meet the ongoing additional costs of disability.3.3 Giving people a lump sum or voucher towards buying certain items of equipment would lead to an additional, unclear interface with local social services. If social services thought clients were commonly getting a voucher for certain items, they may themselves stop providing them.3.4 A discretionary payment would be at risk of inconsistency and unfairness in its allocation (even if staff were trained to a high standard and especially if they were not). And there would probably be no appeal rights. It seems likely that challenges via judicial review would be stimulated.3.5 The loss of passporting and exposure to the benefit cap would each be deeply worrying, either or both of these potentially more than wiping out any help with the additional costs of disability, as claimants’ incomes were reduced and/ or capped.4. Consultation question 3: what are your views on the advantages and disadvantages of option two compared to the current system and options one, three, four and five?4.1 We see no advantages to option 2 (a lower rate of benefit for those who meet or exceed the eligibility point threshold for the daily living component, but score all of their points from aids and appliances) compared with the current system. 4.2 This option in effect introduces a third level of benefit within the daily living framework, at a low rate and without passporting or protection from the benefit cap. Confusingly, it would provide different levels of support for people scoring the same number of points.4.3 The implication is that people who score points on the basis of aids and appliances are likely to have lower additional costs than those scoring comparable overall totals on fewer descriptors. As we have noted above, this cannot be assumed and there is no evidence to support it. When one considers the additional costs typically encountered by blind and partially sighted people (see section 10 below) the shakiness of this assumption becomes clear.4.4 We have already commented on the worrying implications of loss of passporting and exposure to the benefit cap.5. Consultation question 4: what are your views on the advantages and disadvantages of option three compared to the current system and options one, two, four and five?5.1 We see no advantages to option 3 (a new condition of entitlement that claimants must score some points from a descriptor that does not relate to aids and appliances) compared with the current system. 5.2 The importance of descriptor 8b (needing to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information) makes this proposal arguably particularly discriminatory against blind and partially sighted people.5.3 Again, this option is based on the unwarranted assumption that people who score points on the basis of aids and appliances are likely to have lower additional costs than those scoring comparable overall totals on fewer descriptors.6. Consultation question 5: what are your views on the advantages and disadvantages of option four compared to the current system and options one, two, three and five?6.1 We see no advantages to option 4 (a changed definition of aids and appliances) compared with the current system.6.2 This option proposes changing the definition of aids and appliances “to exclude items that are a poor indicator of additional cost and need” – but then goes on to say that these items “could be distinguished by reference to whether they are available at low or no cost and/ or whether they are commonly used by non-disabled people for the same purpose”. 6.3 This again seems to confuse the role of a proxy for additional costs of disability with the cost of purchasing the item itself. For example, a person who uses a magnifying glass to read is likely to need support with shopping, cleaning the home, looking after themselves and possibly engaging with other people. Some aids can be very low cost – for example, varying numbers of rubber bands around bottles, to differentiate them – but are a good indicator of need. 6.4 This option also introduces a further distraction around whether non-disabled people might use the same item. Neither the purchase cost nor whether the item might be used by a non-disabled person tells us, in itself, whether or not the item, when used by a disabled person, indicates a disability that might be expected to entail extra costs.6.5 Blind and partially sighted people increasingly use information and communications technology available to the general public – for instance iPads for magnification and scan and read functions and iPhones for Siri, to use e-mails, the internet and to source information. It is unclear how decision makers would decide whether such tools are used for the same purpose by disabled and non-disabled people. And do we want to encourage people to use more expensive visual impairment-specific tools to remain independent?6.6 This proposal could particularly disadvantage younger people, who are often better at getting the most out of mainstream technology. 7. Consultation question 6: what are your views on the advantages and disadvantages of option five compared to the current system and options one, two, three and four?7.1 We see no advantages to option 5 (reducing the number of points awarded from two to one for the use of aids and appliances in relation to some or all daily living activities) compared with the current system.7.2 In halving the number of points awarded in respect of use of aids and appliances, this option is another which is based on the unwarranted assumption that people who currently score points on this basis are likely to have lower additional costs than those scoring comparable overall totals on fewer descriptors.7.3 This option would leave people who are sight impaired and many who are severely sight impaired in a position where they would receive no or reduced support from PIP.8. Consultation question 7: do you have any other suggestions as to how the current system could be changed or any other comments?8.1 In the context of aids and appliances, our key conclusion is that the existing system works and that the proposed options would have numerous negative consequences.8.2 Nevertheless, the existing system does not work perfectly. The daily living descriptors as they stand, including those relating to aids and appliances, do not adequately recognise or capture the very significant additional costs that blind and partially sighted people face. While fully recognising that the DWP policy intention is not to extend coverage of PIP, there is nevertheless room for some modest improvement and we would be pleased to discuss this within the current PIP daily living framework with the Department.9. Real-life case examples9.1 The following are examples of blind and partially sighted people who would lose PIP under the DWP options (see notes 4 and 5).9.2 Mr. and Mrs. Williams each receive PIP, which helps them meet a range of additional expenses. Mr. Williams works at North Wales Society for the Blind in Bangor. He receives support with his employment through the Access to Work (ATW) scheme, but is affected by the cap on individual awards. His CCTV has broken down and he is currently saving his PIP to buy a new one, as ATW will not assist.Both Mr. and Mrs. Williams would be affected by the DWP proposals. Mr. Williams would lose his daily living component and Mrs. Williams would lose the enhanced rate.9.3 Mr. Davison was previously in receipt of Disability Living Allowance (DLA). Following a relevant change in his circumstances, he requested a review of his existing DLA award. He was then invited to claim PIP. Mr. Davison is 51 years old and has retinitis pigmentosa. In February 2014 he was certified as severely sight impaired. Mr. Davison was assisted by the Legal Rights Service at Action for Blind People to challenge the original adverse decision made on his PIP claim. Following an appeal hearing he was awarded the standard rate for the daily living component and the enhanced rate mobility component. All points awarded under the daily living activities were scored under the aids and appliance descriptors, so Mr. Davison would lose his PIP daily living payment under the DWP proposals, in spite of – as noted above – being registered as severely sight impaired.9.4 Ms. Arnold is registered sight impaired and has moderate to severe hearing loss. She uses a hearing aid. She scored on the PIP descriptors for using aids for cooking, dressing and undressing, communicating verbally and reading. Ms. Arnold uses a food processor and high contrast chopping boards and cutlery to cook. For communication, she uses hearing aids, which she received from the NHS. She also has a hearing loop in her house and a device that connects her hearing aids to her mobile phone. She uses a magnifier to read printed materials; she also needs expensive magnification software to enlarge her computer screen and a bigger monitor. She has to have a more expensive smartphone which allows magnification. In addition to the above, her additional costs include extra electricity: she has to have her lights on even during the day, she has a lot of additional task lighting installed and she cannot use energy efficient light bulbs as the light they produce is insufficient.Ms. Arnold pays for a cleaner every two weeks to make sure her house is clean. Although she has hearing aids, she cannot always hear when in a noisy environment, so has to have someone with her when going shopping or on social outings. She loses things more often, including her medicine, articles of clothing and small items like gloves or keys, so has to pay for replacements. In spite of her needs and costs, Ms. Arnold qualified for PIP by scoring only on aids and appliances, so would lose her daily living component under the DWP options.9.5 Mr. Benson, a PIP claimant advised by RNIB Scotland, is registered partially sighted and works full time. He lives with his partner and two young children. He has retinitis pigmentosa and cannot go out at night unaccompanied. He has difficulties with many daily living tasks. His employer has made significant adjustments to the working environment and his role at work, to enable him to continue in his employment.A claim for PIP was made in 2014. Mr. Benson was awarded the standard rate of mobility and scored four points for daily living for preparing food. He scored no points from the other descriptors, therefore was not awarded the daily living component. An appeal was lodged and heard in 2015. The appeal was successful, Mr. Benson being awarded the enhanced rate for mobility and the standard rate for daily living. For the latter component, the tribunal awarded two points for preparing food, two points for using an aid and appliance to dress and undress, two points for using an aid or appliance to read or understand complex written information and two points for prompting or assistance to be able to make complex budgeting decisions.Mr. Benson’s partner was now entitled to claim Carer’s Allowance for looking after him and a carer premium would be included in the calculation for Housing Benefit and Council Tax Support.Mr. Benson uses his PIP daily living payment to help with extra living costs, including purchasing aids and equipment that can help him to maximise his functional vision; purchasing foodstuffs that are already chopped, grated and prepared, allowing him to help provide meals and snacks for his family; and keeping his lights on during the day when additional light is required to reduce the risk of accident when carrying out household tasks. Under the DWP consultation options, Mr. Benson would fail to qualify for any daily living component. The impact of this would be very great. His partner would not be eligible to claim Carer’s Allowance for looking after him, other benefit enhancements would be lost and he would have to restrict his options for food shopping and using extra light in his home.9.6 Mr. Charles is 63 years old and was previously in receipt of DLA. He was sent a letter inviting him to make a claim for PIP as part of the transition to the new system. Mr. Charles made a word template of the claim form as he was unable to complete the printed version that was sent to him. He sent this with his answers to the DWP, who accepted it as a reasonable adjustment. In due course, he was awarded the enhanced mobility rate and the standard daily living rate.All points awarded under the daily living activities were scored through the aids and appliance descriptors: two points each in respect of preparing food; taking nutrition; washing and bathing; and reading and understanding signs, symbols and words. Under the consultation options, he would lose his daily living component.10. Examples of additional costs10.1 The following are examples of additional costs frequently incurred by blind and partially sighted people as a consequence of their visual impairment:additional heating, lighting and water when more time is spent at home;additional lighting because of visual impairment;higher costs of washing clothes more frequently (due to inability to tell if they are dirty) – electricity, washing powder or liquid;paying somebody for cleaning the home, inside and outside window cleaning, garden maintenance; decorating and basic repairs that would be “DIY” for someone with sight;buying more expensive general appliances because they are more accessible, for example have buttons, not a touch screen;medicines;payments to readers/ personal assistants;chiropodist;a blind or partially sighted person may need someone to go with them to a cinema, theatre or concert hall, which may well charge admission for the companion;higher phone costs due to staying in contact with people by phone where mobility is an issue;higher food costs because of difficulties cooking and reliance on ready meals and/ or pre-prepared vegetables;higher shopping costs because of lack of mobility and transport, restricting choice and precluding shopping around for bargains; having to rely on others (often paid) to do the shopping;having to replace things (for example shoes or clothing) more often, because they have been lost or damaged;the extra costs of having a guide dog, for example paying to have carpets cleaned more often and having a dog run cleaned;paying somebody to help with paperwork, reading and writing correspondence, paying bills, filling in forms etc.Braille paper;cost of aids and appliances, including for reading and writing;cost of contracts and insurance for some aids and appliances – particularly electronic, such as tablets and smart phones.11. Conclusion 11.1 Blind and partially sighted people, including those who score points on the basis of aids and appliances, have very substantial additional daily living costs that PIP can help to meet. Our key conclusion is that the existing system works well in respect of using aids and appliances as a proxy for disability leading to extra costs and that none of the proposed options should be adopted.11.2 We have also emphasised that the financial consequences of these options would be very serious for blind and partially sighted claimants losing their PIP. The loss would be ?55.10 per week, at current benefit rates, for those only in receipt of the lower PIP daily living rate – but the loss of passporting to other benefits means that households could lose two or three times this amount, depending on their particular circumstances.11.3 We would therefore urge Ministers to think again before exposing PIP claimants to such serious financial risks.Notes(1) Consultation on aids and appliances and the daily living component of Personal Independence Payment, DWP, Dec. 2015.(2) An Independent Review of the Personal Independence Payment Assessment, Paul Gray, Dec. 2014.(3) DWP option 2 would leave some PIP in payment at a new lower rate, but would not permit passporting or protection from the benefit cap.(4) Pseudonyms have been used except for Mr. and Mrs. Williams.(5) DWP option 4 presents a problem in assessing its impact. Under this option, the definition of aids and appliances would be changed to exclude items that the DWP considers to constitute poor indicators of additional cost and need. We have estimated that this would impact adversely in these case examples, but without further information as to how the definition would be changed, the effect is strictly speaking imponderable at present. [See p. 18 for contact details in respect of further information].Further information is available from:Geoff FimisterCampaigns Officer (Incomes)Royal National Institute of Blind People105 Judd StreetLondon WC1H 9NETel. 020 7391 3266 E-mail gfimister@.uk ................
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