Personal Independence Payment: assessment criteria with thresholds - consultation

A joint submission from the visual impairment sector

The National Federationof the Blind of the United Kingdom

Personal Independence Payment: assessment criteria with thresholds - consultation

A joint submission from the visual impairment sector

April 2012

Action for Blind People

Blind Veterans UK

Deafblind UK

The Guide Dogs for the Blind Association

The Macular Disease Society

The National Blind Children's Society

The National Federation of the Blind of the United Kingdom

The Royal National Institute of Blind People

SeeAbility

Sense

Visionary

[Brief details of the above organisations are provided at Appendix 4].

1. Introduction

1.1 The Government is to replace Disability Living Allowance (DLA) with Personal Independence Payment (PIP). We responded

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in detail to the White Paper1 and to the draft regulations2. We continue to be involved in further discussions with officials at the Department for Work and Pensions (DWP).

1.2 Certification as severely sight impaired (blind) or sight impaired (partially sighted) is subject to a rigorous assessment of level of sight loss by a Consultant Ophthalmologist. There are about 45,000 DLA recipients of working age where sight loss is the "main disabling condition". These include people who are deafblind and constitute less than 2.3% of the total relevant DLA caseload.

1.3 While our discussions with the DWP have been generally constructive in tone, we are concerned that the requirement to make over £1 billion in savings hangs over them. This has proved an obstacle to developing a benefit that properly meets the range of needs of disabled people and not least the additional costs associated with sight loss.

1.4 We now know that – according to the Government’s own figures – about half a million people will lose entitlement altogether as DLA is replaced by PIP. Still others will qualify for a lower rate than they currently receive. For example, 100,000 fewer people will receive combined enhanced mobility and standard daily living (in 2015) than we might have expected in the case of DLA higher rate mobility and middle rate care3.

1.5 The RNIB Group is planning research to model just how people with various visual impairments are likely to fare under the new system. More immediately, the RNIB Group has undertaken research into the extra costs arising from visual impairment. This

1 Disability Living Allowance review: a joint submission from the visual impairment sector, 11 VI sector organisations, February 2011. Updated as an RNIB briefing, April 2011.2 The proposed Personal Independence Payment: the draft regulations - key issues for blind and partially sighted people, 9 VI sector organisations, June 2011.3 Personal Independence Payment: assessment thresholds and consultation, DWP, January 2012.

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research is outlined in section 3. below4 and its findings feed into our responses to the specific consultation questions.

1.6 In section 4. below, we consider the specific consultation questions, linking them with our research findings and detailed proposals.

1.7 In section 5., we summarise our detailed proposals, which are designed to address some of the problems we have identified. They include a proposal for an additional Activity – “Maintaining a safe and liveable home environment” (or “Keeping safe at home”) (Activity 12). Without it, we cannot see how PIP can be made properly relevant to blind and partially sighted people – and we are sure it will address similar issues for a number of other areas of disability.

1.8 On a point of terminology: we suggest that the term, “guide dog or other assistance dog” should be used instead of “support dog”. The latter term is rarely used in the disability sector. (For example, the umbrella organisation is “Assistance Dogs UK”).

1.9 We begin by offering some general observations.

2. General observations

2.1 We consider that blind and partially sighted people risk being caught in a double bind in relation to the PIP assessment:

- On the one hand, the Government’s wish to concentrate resources on those in greatest need threatens to undermine the preventative function of DLA currently – that is, its role in promoting independent living and preventing or slowing a move towards greater reliance on care services.

- On the other, the impact of sight loss is consistently underestimated, causing it to be perceived as a lesser impairment than in fact it is.

4 It is fully described in Personal independence payment: assessment thresholds - blind and partially sighted people's additional costs and the case for improved activities, descriptors and weightings, RNIB Group, April 2012.

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2.2 Thus, the current discussion around PIP reproduces a failing familiar from the treatment of sight loss in the social care system.

2.3 There are a number of areas where we consider that the impact of sight loss has not been properly recognised. In some cases this is due to the restrictive definition of an activity, in others because the criteria specifically define conditions or circumstances that apply but exclude particular groups of people.

2.4 The explanatory note to the second draft of the assessment regulations5 states (at para. 4.23) that "we are clear that the impact of all impairment types can be taken into account across the activities, where they affect an individual's ability to carry out the activity and achieve the stated outcome".

2.5 However, a number of the DWP examples still appear to be grounded in the medical model of disability, despite the Government's stated intention to assess claimants on an individual basis, addressing barriers to independence.

2.6 The approach to the use of aids and appliances in the PIP assessment is problematic. Especially given continuing technological advances, disabled people use a range of aids and appliances which, while assisting them in their everyday lives, bring additional costs and do not by any means totally eliminate the barriers they face. We are concerned that the PIP assessment in its current form does not give due weight to a person’s use of aids and appliances, leaving them ineligible for what we would consider the appropriate PIP award.

2.7 While some basic aids may be provided by local authorities or health services, many people purchase their own. This may be because they are deemed ineligible or because what is provided may not fully meet their needs. DLA currently plays a crucial role in providing funding for individuals to make personalised choices to buy the aids and appliances that will make the most difference to them. It is essential that this should continue to apply under PIP.

5 Personal Independence Payment: second draft of assessment criteria (explanatory note), DWP, Nov. 2011.

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2.8 We are also concerned at the way the case studies have been chosen to emphasise adaptation and change, both in the condition and in how the person deals with it over time. Writers of the case studies appear to expect high-ish initial awards, but that most people will “adapt” - or get equipment or reasonable adjustments - so can be deemed to need less support when reassessed. In reality, regardless of the length of time a person has lived with sight loss, the difficulties and barriers remain. The impact of sight loss does not diminish over time and our experience is often that adaptation actually equates to restriction of people's previous activities. Conversely, those who are able to become more independent are very likely to experience additional expense – for example, greater transport costs through getting out of the house more. Our fear is routine reductions at renewal.

2.9 Crucially, we are concerned about people who receive – or might in future have received – the higher rate of DLA mobility, following an evidence-based campaign that clearly demonstrated definite needs and was accepted by all political parties. These proposals appear to exclude many people with a severe visual impairment from the enhanced mobility rate of PIP. This could put the clock back to 1992 - you are guaranteed the enhanced rate if you are wheelchair user, you don't get it if you are blind. [See Activities 10 and 11, included in Appendix 1 below].

2.10 It is also clear that, despite serious restriction in sight, many partially sighted people would have difficulty in qualifying for the standard daily living component.

2.11 To target PIP effectively, we believe the draft regulations need to be fair, logical and consistent. These are the principles against which we have measured the criteria and in key respects we have found various activities, descriptors and weightings severely lacking.

2.12 We give examples of these problems in the ensuing sections of this report, including the response to the specific consultation questions below.

3. The additional costs of visual impairment and some associated issues

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3.1 In March 2012, the RNIB Group commissioned an independent researcher to conduct 11 one-hour interviews with existing DLA claimants. We asked a series of questions about the support they receive and the typical weekly costs to which this gives rise. We interviewed people of working age, eight of whom are registered blind and three registered partially sighted. They live in a range of locations across Great Britain, including Wales and Scotland. They are currently claiming different rates of DLA, but six of the eight claimants registered blind receive the higher rate mobility component following its extension to severely visually impaired people in April 2011.

3.2 Case studies and quotes provided throughout this document are drawn from this research. Wherever possible we have indicated which of these case studies are registered blind (or “severely sight impaired”) and which are registered partially sighted (“sight impaired”). It is striking how similar their stories are. Severely sight impaired people and those who are sight impaired basically have little or no sight. Sight impaired people face multiple barriers to independence. Like severely sight impaired people they face significant extra costs maintaining even the most basic levels of independence.

3.3 As some of our case studies demonstrate, partially sighted people experience barriers across the full range of assessment activities. In our research, we heard from partially sighted people who cannot see flames on their cookers, cannot read printed labels on food packaging, only cook when their relatives are supervising, need help with avoiding obstacles outdoors, struggle independently to locate toilets and avoid making journeys in bright light.

3.4 The full list of extra costs identified is set out at Appendix 3 to this document.

3.5 We also draw upon a recent research exercise RNIB conducted with 167 blind and partially sighted people on travel, shopping, managing money, levels of independence and the need for assistance. This survey was conducted in late 2011 and early 2012. The sample was taken from RNIB's Customer Relationship Management database. This includes details of around 100,000 blind and partially sighted people who have recently used RNIB's core services. The results are representative of the blind and

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partially sighted people to whom RNIB currently provide services. As with any research that relies on customer lists, there are limitations as to how far the findings can be applied to the wider population of blind and partially sighted people. We have only presented the findings applicable to people of working age.

3.6 Finally, we also returned, where appropriate, to case studies that we undertook during research in 2010-11 which fed into previous stages of these consultations.

4. The consultation questions

Q.1 What are your views on the latest draft daily living activities?

4.1 Preparing food and drink (Activity 1): If the preparation of food and drink would take a blind or partially sighted person over twice as long as anybody else does this mean that they would score as if they could not undertake this activity? Or would it mean that they required assistance to either prepare or cook a simple meal? For the purposes of scoring points under this activity we think it should mean the former, but we need this to be clarified.

4.2 Blind and partially sighted people often experience difficulties preparing food and drink. Not being able to see presents a number of obvious challenges, including not being able to check whether food has mould or has passed its use-by date. Using saucepans and boiling water are just two routine tasks that are difficult to complete, at least safely. If you cannot see it is hard reliably to determine whether the food you are preparing is cooked to a reasonable standard.

4.3 One of the main costs involves having to purchase pre-prepared food, including ready peeled and chopped vegetables and filleted meats, poultry and fish. Another comes from using the wrong ingredients and producing more wastage, meaning you get through food more quickly. Finally, there is the cost of purchasing aids such as talking food thermometers, one-touch can openers, labelling devices and talking kitchen scales, which tend to sell at a higher price than conventional kitchen appliances.

4.4 Our interviewees told us:

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“I can only turn on a talking microwave... if I didn’t have my wife supporting me every day I would have to get takeaways at greater expense” (DLA claimant who is blind receiving middle rate care).

“I am not able to cook because of the risks involved… handling boiling items. I use microwaveable foods, use more pre-prepared foods, can’t read instructions or check use-by dates... this typically costs me £30 a week” (DLA claimant who is blind receiving middle rate care).

“I can’t see flames on the cooker, or numbers on dials, printed labels... I only cook when my daughter or husband are around. I need this support on a daily basis and it costs more as I have to buy pre-prepared foods, about another £15 per week” (DLA claimant who is partially sighted receiving lowest rate care).

“I tend to over-cook food to make sure it is properly cooked. I use extra gas, use more pre-prepared foods which cost more. My partner is sighted and we have worked out that my reliance on self-prepared foods cost us about £50 a week extra” (DLA claimant who is blind receiving lowest rate care).

4.5 A major problem left unaddressed here is the question of whether someone needs assistance to buy food. This often proves a very challenging task for a person with little or no sight who may require an aid to see what they are picking up off the shelves. They may also require assistance from another person to help supervise them as they carry out their shop, informing them which items are under offer, what they cost and which items are close to their sell-by date. We understand this Activity has since been revised to concentrate on the actual tasks involved with preparing food and drink.

4.6 Since this is the case we recommend6 that Activity 9, “making financial decisions”, should encompass the costs that arise from needing additional help or aids to buy food.

4.7 We envisage a blind person scoring at least four points and possibly eight points under this activity and a partially sighted person scoring at least two points.

6 All recommendations are set out in summarised form in section 5.

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4.8 Taking nutrition (Activity 2): Occasionally, blind people can find it difficult to cut food into pieces or remove bones, not only during the preparation of a meal but also when they eat. It can also take longer to convey food or drink to one’s mouth, especially if extra care needs to be taken using cutlery. We were unable to see why the two blind people in the case studies (see Appendix 2 below) would not have scored through needing assistance with food in this way.

4.9 Managing therapy or monitoring a health condition (Activity 3): We have significant concerns with the drafting of this Activity. In the draft regulations it stands out as one of the few Activities where the use of an aid or appliance would not be recognised, meaning blind and partially sighted people reliant on specialist aids might not score any points here.

4.10 We are thinking here of people living on their own who do not receive regular assistance at home but who nonetheless rely on aids like talking blood glucose aids to independently monitor a health condition.

4.11 In its “frequently asked questions” (FAQs) section, the DWP website says that people who do not get PIP are most likely to be people with conditions that have a low impact on their day-to-day lives and who have a high level of participation in society without needing expensive aids and appliances or a lot of help from others. By ruling out the recognition of aids and appliances and their critical use in safely and reliably managing one’s health, the draft regulations risk a blurring of definitions. They mean people who should at least score one point here score none, which could well prove the critical difference between receiving the enhanced rate, the standard lower rate or no rate at all.

4.12 We recommend that the DWP consider the sometimes substantial costs blind and partially sighted people face when they use specialist aids to manage a condition on their own. Only being able to manage or receive medication, therapy or monitor a health condition with the use of an aid or appliance should attract one point.

4.13 The example given in case study 10 (Sarah) scores somebody getting daily injections of insulin at just one point. This seems very low. Managing therapy or monitoring a health

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condition is clearly an essential task for daily living, no more so perhaps but certainly not obviously less essential than “preparing food and drink” and “taking nutrition”, which start off with a score of two points.

4.14 We recommend the weighting of descriptor (b) – “needs supervision, prompting or assistance to manage medication or monitor a health condition” – is increased from one point to two. This would mean there is a logical progression from “needing an aid or appliance” to “needing supervision, prompting or assistance”.

4.15 We must also consider the hidden costs to family members and carers giving up work or changing working patterns so they can routinely administer or supervise the management of medications. Then there are the costs to one's health through missing healthcare appointments where GP or consultants' letters are sent in the post using inaccessible print. Other costs can be even more serious. People with little or no sight are often unable to detect a change in their appearance, or indeed any troubling symptoms, which might be the early signs of a health problem (for example blood in their stools, which may indicate the early signs of bowel cancer).

4.16 The additional costs can include:

Aids and appliances like talking blood pressure monitors (£70.00), talking pill organisers (£51.59), easy-to-see blood pressure monitors (£46.00) and cheaper, relatively more common items like dosette boxes (£10.95) and pill crushers (£5.50).

Other costs including having to buy medication more frequently, either for health conditions common amongst blind and partially sighted people (for example, diabetes) or due to the frequent loss of tablets and pills.

4.17 Our interviewees told us:

“I need an eye drop dispenser which costs about £4 and I need someone to check my doses of medication. I waste about 20 per cent of the medications I buy as a result of dropping and losing tablets” (DLA claimant who is blind receiving lowest rate care).

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“I need blister packs for medication and I have to be careful not to drop any tablets so I ask my family to help me take medication... I only take it when they are around” (DLA claimant who is partially sighted receiving lowest rate care).

“I need someone to do my eye drops for me. I have additional travel costs to get to the pharmacy as I live in a rural area” (DLA claimant who is blind receiving middle rate care).

“I need pill organisers. My husband checks that my medication is correct. I have taken the wrong dose by mistake in the past” (DLA claimant who is blind receiving lowest rate care).

4.18 We envisage both blind and partially sighted people scoring at least one point under this Activity (taking into account their likely use of aids) although we would recommend descriptor (b) has an improved score of two points.

4.19 There is also an argument to be made that the current NHS guidelines on activity levels should apply to this Activity, as these support basic wellbeing and also serve to prevent longer term health problems. The link to the NHS website with the information is as follows:http://www.nhs.uk/Livewell/fitness/Pages/physical-activity-guidelines-for-adults.aspx

We assume that any GP would recommend these, so we cannot see why support in undertaking this basic level of physical activity for health and wellbeing related needs should not be included in this Activity area.

4.20 Finally, total time taken by this Activity should include the time taken by a carer to get to and from the claimant's home.

4.21 Bathing and grooming (Activity 4): Bob and Sarah score zero points under this activity, possibly because the activity and the descriptors within it have been defined so narrowly. Grooming has been defined to comprise the following three activities: combing or brushing one’s hair; washing one’s hair; and cleaning one’s teeth. For a set of criteria that were meant to be take us further away from the DLA model – apparently focused on an individual’s physical ability to complete key tasks – this is an arbitrary, unacceptably limited perspective on the tasks essential for safe and reliable grooming.

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4.22 Given the severity of his disability, Bob would in all likelihood need an aid or appliance to groom, and therefore should have scored one point. Again there are a number of hidden costs, not least the costs to family members who provide high levels of personal assistance or supervision with grooming.

4.23 We recommend the DWP broadens out the definition to include the additional costs of essential personal maintenance such as support with cutting nails, shaving, waxing and applying make-up.

4.24 These tasks are fundamental in terms of maintaining one’s personal hygiene and also sustaining self-esteem, characteristics disabled people must possess not only for their importance to overall quality of life, but also in order successfully to obtain and remain in employment.

4.25 Typical aids that assist blind and partially sighted people with these tasks, such as magnifying mirrors with LED lights, cost in the region of £25 to £40.

4.26 People with sight loss are often physically able to perform these tasks. The main barrier they experience is checking they are doing these tasks correctly. The criteria should therefore be amended to recognise this important factor. Needing assistance from someone to check you are shaving or have shaven safely and reliably (both face and legs), should be included within the scope of this activity. Either this should feature as a descriptor in its own right (and attract two points, like needing assistance to groom) or the definition of ‘needs assistance to groom’ should be broad enough to encompass help from someone else to check you are grooming correctly and the task has been performed to a reasonable standard.

4.27 We could describe this issue another way. Activity 6 (“dressing and undressing”) includes a descriptor on assistance to select appropriate clothing. This helpfully acknowledges that even where a disabled person is physically able they may still experience difficulties checking they have performed a task to a reasonable standard. We believe Activity 4 on ‘bathing and grooming’ needs to mirror this approach. Descriptor (d) “needs assistance to groom” must at the very least acknowledge that this

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assistance might come from someone acting as your eyes - instructing, guiding and then reporting back to you how you are performing in various grooming tasks.

4.28 Finally it is important to note that some blind people need aids to help bathe, so for example showering devices with tactile buttons.

4.29 Our interviewees told us:

“I have to have my nails cut by the chiropodist every three to four weeks” (DLA claimant who is blind receiving middle rate care).

“I need help with cutting my nails, shaving and making sure my artificial eye is in properly. I need this support daily and it is all handled by my family who I hand my DLA payment over to so they can care for me” (DLA claimant who is blind receiving middle rate care).

“I need help with cutting my nails but if my mother isn’t there to do my nails, the chiropodist costs £25” (DLA claimant who is blind receiving higher rate care).

“I need to use aids to help with looking after my appearance three or four times per day... I find it too difficult to apply make-up” (DLA claimant who is blind receiving lowest rate care).

“My wife and son check my appearance for me; they also cut my nails and check that I have shaved properly” (DLA claimant who is blind receiving middle rate care).

4.30 Reviewing the costs of high street and Age UK services shows that the costs of a typical toenail cutting service range from £15.00 to £30.00 (including the costs of receiving your own nail kit).

4.31 We envisage that some partially sighted people would need an aid or appliance to groom and some blind people may even need aids or appliances to bathe, so they may score up to two points under this activity. Blind people would normally need assistance to groom or check they are doing tasks correctly.

4.32 Managing toilet needs or incontinence (Activity 5): It is important that the definition of “managing toilet needs” should accommodate the needs of people with little or no sight who

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experience difficulties safely and independently locating toilets outside their own home. To define this activity solely in terms of the physical ability to get on and off the toilet forgets blind and partially sighted people cannot even do this unless they can safely and reliably locate the toilet outside their own home or other familiar environments.

4.33 This is a major shortcoming, so we recommend that the Activity should be broadened out to include “safely and reliably locating a toilet in an unfamiliar environment” so blind and partially sighted people can fulfil this basic function. The definition of “locating a toilet” could be as follows: “using visual and verbal cues to follow a simple route or orientate yourself so you can reach the nearest available toilet”.

4.34 We are disappointed that neither Bob nor Sarah has scored points here, so fear routine rejection of blind and partially sighted people’s toilet needs. This would again go against the stated aim of PIP, to consider individuals’ needs, not look at their impairment.

4.35 It is also important to recognise that many blind and partially sighted people restrict their activities out of fear, for example in this context, that they might be caught in a situation where they cannot independently locate a toilet without asking for help from a stranger or go to an event where they cannot be sure somebody of the same sex will be able to take them to the toilet.

4.36 The PIP assessment must consider these hidden costs, for instance the cost of hiring personal assistance or paying for someone else to accompany you on trips to restaurants, pubs and other places where you might need to use the toilet. Often this help extends beyond simply guiding blind and partially sighted people to the toilet. It can include help prompting or supervising someone with sight loss so they can be sure the toilet cubicle is clean, locate the basin, detect whether there is enough toilet roll and whether the floor is slippery or has been washed. There is then the issue of finding the taps, soap and driers to ensure cleanliness, all of which could fit into a need around "bathing or washing" but which is currently ignored.

4.37 Assuming someone pays a personal assistant the minimum wage (and in many cases they will need to pay more than this) a

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three-hour trip to engage in social activities would involve paying a personal assistant £18.57.

4.38 Our interviewees told us:

“I need help all the time with finding the toilet. In fact I need help all the time with mobilising in unfamiliar locations... I can’t see obstacles or furniture” (DLA claimant who is partially sighted receiving lowest rate care).

“I especially need help from other people to help me get to and locate the toilet... especially if stairs are involved. Restaurants tend to be dimly lit. I try to do this on my own but it is very difficult to do with my seven-year-old son. It is very difficult to ask strangers for help” (DLA claimant who is partially sighted receiving lowest rate care).

“I need my parents to take me places, especially if it is a darkened environment” (DLA claimant who is blind receiving middle rate care).

4.39 Some people’s sight condition is worse in various light conditions. It is important that the assessment process for PIP takes account of this in the rules on judging fluctuating needs and the amount of time if can take claimants to complete an activity. As we can observe from the second quote above, people with little sight might be able to independently locate toilets in some light conditions but not when it is dimly lit or dark.

4.40 We recommend that descriptor (d) under activity 5 on “managing toilet needs” should encompass “physical intervention by another person to help an individual locate a toilet in an unfamiliar environment”. As with all other tasks this would need to be done safely and reliably.

4.41 We envisage that this would mean people with visual impairments who fit descriptor (d) scoring four points. It does not matter whether or not an individual has a guide dog or an orientation aid – these would not ensure that they locate the toilet. Nor does it matter whether they have a family – it cannot always be assumed that family members will be there to guide the claimant.

4.42 Dressing and undressing (Activity 6): We agree with the DWP that claimants like Bob and Sarah would fit descriptor (c) for

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this Activity. We are also pleased that help with selecting appropriate clothing has been included within its scope. People with a visual impairment would normally fit this descriptor but might alternatively fit descriptor (b) taking into account the use of aids or appliances to dress or undress. Some blind and partially sighted people use colour identifiers, which can vary in terms of expense but usually cost in the region of £40 to £80.

4.43 It was striking how similar our 11 recent interviewees’ experiences were when we compared their difficulties with the challenges and costs observed amongst DLA claimants we spoke to as part of our 2010-11 research for the earlier consultations. There are very substantial additional tasks involved with appearance. Arranging and selecting appropriate clothing is also a regular and significantly time-consuming task for carers.

4.44 It is disappointing that the Activity has not been defined in a way that meaningfully captures the full range of barriers to dressing. People with little or no sight find choosing clothing to purchase a very difficult task. Again there are hidden or knock-on costs here. The hidden costs are often borne by family members or carers who need to play an enhanced role selecting or buying clothing on behalf of visually impaired people. The added costs of internet shopping with specialist software also need to be taken into account. Blind and partially sighted people sometimes tell us they prefer shopping for clothes from home. They can use zoomtext or other specialist software so they can select clothing to buy without fear that they will suffer embarrassment, by asking “obvious” questions about the colour or size of a particular item, or indeed its price.

4.45 RNIB’s research on blind and partially sighted people’s experiences of shopping7 also highlights the indignity and anxiety they sometimes feel when purchasing clothes, for instance when they ask a shop assistant to show them where certain types of clothing have been shelved or stacked and practical help is not forthcoming. Shop assistants sometimes do not appreciate that a blind or partially sighted person has a visual impairment, which can add to the levels of embarrassment or anxiety the customer feels.

7 Lost for words, RNIB, 2011.

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4.46 We recommend that either this Activity on “dressing and undressing” or the Activity on “making financial decisions” (Activity 9) should address the difficulties and extra costs involved in choosing clothing to buy.

4.47 Another area that causes difficulties when you have a visual impairment is judging whether or not your clothes are still appropriate to wear and whether they need to be washed. If you live on your own, it is not always possible to tell, so people manage by frequently putting the same items in the wash. People with sight loss must accept the knock-on costs that come from washing clothes more frequently and regularly replacing clothes stained, torn or worn out by constant washing. Some blind and partially sighted people might have to own more clothes, given the greater likelihood so many will always be in the wash or drying. People with little or no sight also experience difficulties knowing whether or not they have spilt something on their shirt, trousers, tie, blouse or skirt, a problem when you are at work or meeting friends and want to socialise on equal terms. Other everyday challenges (and costs) include knowing whether buttons need sewing, ironing clothes, taking up hems and altering clothes for one's children. Another major issue is the frequency with which shoes and boots need to be replaced, due to trips and scuffs being commonplace when walking.

4.48 Our interviewees told us:

“My wife and son have to look after my appearance, check the appearance of my clothing” (DLA claimant who is blind receiving middle rate care).

“There are other costs I regularly incur... extra laundry costs because I can’t be sure whether my clothes are wearable as I can’t see them. There are also extra dry cleaning costs in order to make sure that my clothing looks right. I am unable to access an outdoor drying area or see a washing line on a bright day so I use additional heat to get my clothes dry” (DLA claimant who is blind receiving lowest rate care).

“I rely on my peripheral vision to check my appearance, but I can’t tell what is on my clothing, so need someone to check my clothes for me. I need this help every day” (DLA claimant who is blind receiving middle rate care).

“I need someone to check my clothing every day. Additional costs are caused by spilling food on clothing which increases

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laundry costs. I also snag my clothes on furnishings and door handles so need to get them altered and repaired” (DLA claimant who is blind receiving middle rate care).

“I need really good lighting to be able to see what I am doing with everyday tasks. It drives me mad if my surroundings are too dark... my DLA goes on household tasks that I can’t see enough to do, like altering clothes” (Ms. Jenkins, 2010-11 research, DLA claimant receiving lowest rate care).

“If I didn't get DLA I'd have to have a wardrobe restricted to discrete colours and only have wash and wear items” (Mr Phillips, 2010-11 research, DLA claimant receiving middle rate care).

4.49 The additional costs caused by needing extra lighting, heating or electricity to wash or dry clothes more frequently are not dealt with in the draft regulations. Like other organisations, we view this as a major omission. To participate effectively in social activities or secure and maintain a job, DLA claimants tell us they use the money on assistance and aids to dress and select appropriate clothing. Just as important, however, are the costs created by having higher utility bills. Together with other key tasks fundamental to maintaining a safe and liveable home, a common thread throughout all 11 draft activities is a lack of regard for blind and partially sighted and other disabled people’s additional costs undertaking household tasks that non-disabled people take for granted.

4.50 We go on to consider this and set out a new Activity with new descriptors concerning “maintaining a safe and liveable home environment” in section 5. below.

4.51 We recommend that the DWP widens out the definition of this Activity to include “needs assistance or prompting to select appropriate clothes to buy” which could either come within the definition of descriptor (c) as it stands or constitute another descriptor in its own right. This could mean awarding someone one point where help selecting clothes to buy is the main limitation established within this Activity.

4.52 If this is not possible within the scope of Activity 6 on “dressing and undressing” it should be contained within Activity 9 on “making financial decisions”.

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4.53 We envisage that, as the definition stands, blind and partially sighted people should normally score two points under this Activity. However, widened out so the Activity also takes into account assistance with selecting appropriate clothes to buy, there should also be an option for people to score at least one point where purchasing clothes is their biggest barrier and expense.

4.54 Communicating (Activity 7): We cannot overstate the importance of Activity 7, on “communicating”. To secure a fair assessment for people living with sight loss, this activity needs to undergo significant revision.

4.55 Earlier in this submission, we stated that we would judge the draft criteria in accordance with three principles: whether they are fair, logical and consistent. We have already highlighted where there is a lack of consistency (for example, taking into account claimants’ use of aids and appliances in some activities but not others). We question the fairness of some proposals (for example whether it is fair to exclude blind and partially sighted people from daily living activities where they clearly experience barriers and additional costs, but since they have the cognitive ability to carry out these tasks, nonetheless still score zero points). Regarding Activity 7, we have problems with the logic that has been employed.

4.56 Some of the biggest issues relate to the treatment of deafblind people, who experience multiple barriers to communication. They are not able to access written information and need communication support to express and understand verbal information. It is very important that Activity 7 should recognise the double disadvantage and additional costs which they face.

4.57 Therefore, we believe that people who use both aids to access written information and communication support to access verbal information should be awarded 10 points and individuals who require both assistance to access written information and communication support to access verbal information should receive 12 points.

4.58 In respect of visually impaired people with single sensory loss, we recognise the DWP’s work to separate out the various aspects of “communicating” including the difficulties uniquely

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caused by visual impairment. Welcome improvements have been made to the descriptors since the first set of criteria were published in May 2011.

4.59 However, where we believe the draft criteria to be illogical is in the scoring of descriptor (d), which is unacceptably low. We have presented detailed evidence to the DWP on this. Below, we provide a number of quotes which illustrate the barriers and costs that blind and partially sighted people experience accessing written information.

4.60 There is also a potential conflict between descriptors (b) and (d) of Activity 7. An assessor may ask you whether you need a screen reader to access written information, and on learning that you do, just award you 2 points against descriptor (b), ignoring the fact that you almost certainly need assistance from other people to access written information too. So you might only score 2 points, not 4. Case study 10 suggests this might not be the case. Sarah needs assistance, but she also uses an adapted telephone and computer keyboard and nonetheless scores 4 points against descriptor (d). But this needs to be made clear.

4.61 There is a questionable logic in scoring descriptor (b) of Activity 7 lower than descriptor (d). Does this mean that use of aids and appliances to access written information suggests a greater level of adaptation or independence than someone's need for assistance? This shows a lack of understanding of the day-to-day reality of needing aids and appliances, not just in terms of additional costs, but of the fundamental reliance on, say, magnifiers, for accessing written information.

4.62 Moreover, descriptor (b) of Activity 7 suggests that, in deciding whether a person needs an aid or appliance to access written information, their use of spectacles or contact lenses indicates that they can access such information independently. Therefore they potentially score 0 points here. But what about people with some useful vision who need specialist spectacles or lenses to access information? Their difficulties in accessing written information are not addressed.

4.63 A number of possible amendments could be made. First, the DWP could change the scoring of descriptor (d), so the weighting is increased from four to eight points. This would mean needing

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assistance to access written information entitles you, like support with expressing or understanding verbal information, to the standard rate of the daily living component. Other options put to the DWP have included separating out basic information from complex information (a partially sighted person might be able to see a danger or hazard sign in large print but would be unable to read a newspaper article, job advert or council tax bill). Discussions have also centred on the possibility of separating out individuals’ use of basic aids to access written information, so for example a magnifier, from a complex aid, like specialist software or a computer Braille device. We go on to explore some of these options in our recommendations and Appendix 1.

4.64 Our first recommendation here relates to the scoring of descriptor (d) on accessing written information. This should be defined in broad terms, not just accessing information in print form, but accessing information in your preferred format, be it e-mail, Braille, audio or large print. The descriptor needs to reflect the additional costs and difficulties involved with obtaining these formats (despite the Equality Act) and the common use of many expensive aids and software that act as a medium for obtaining standard print information. The descriptor on accessing written information must attract eight points. It is wrong to score it differently from needing communication support to express or understand basic verbal information. The descriptor also needs to take into account the considerable added expense of purchasing complex aids like braille displays, braille notetakers and video magnifiers.

4.65 In a sense, all information is written unless it is verbal. Sighted people tend not to think of it in this way. If a sighted person passes a shop window and sees an offer or a poster advertising a new product, it is just a simple advert or a poster to either take in or ignore. To blind and partially sighted people, this information, presented however prominently, might never be accessible. To access all written information, however trivial or potentially transformative, would involve getting assistance from someone standing alongside you pointing everything out. There are many varied ways in which this creates additional costs but in this one example, it could mean going to the shop you always buy your food from, not knowing there is a cheaper alternative selling the same products at a better price nearer to where you live.

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4.66 In short, people with little or no sight are at a major disadvantage in relation to communicating independently. They will often require labelling systems in their own homes, so for example they do not mistake cat food for baked beans. People with little sight might need big button telephones. Mobile phones need to be adapted, or if they are already accessible they will often be sold at a more expensive price. Braille labelling is scarcely provided in a way that would benefit users and in any event the majority of blind and partially sighted people cannot read Braille. CCTVs, talking televisions with electronic programme guides, screen readers - all these aids add up in terms of weekly, monthly and annual expenses. Then there are the costs of having a personal assistant or carer to read your correspondence. As one of the callers to one of our helplines recently put it, “the blind world is an expensive world”.

4.67 Typical aids and other forms of support that cost money include:

Magnifiers (video magnifiers, stand magnifiers, dome and bar magnifiers, handheld magnifiers, hands free magnifiers, pocket magnifiers and illuminated magnifiers) cost from around £106.80 for a simple TV magnifier up to £1434 or more for a desktop video magnifier which enables you to read important mail and correspondence, like bank statements, in large, easy-to-read print.

Digital set top boxes which announce all on-screen TV information, including programme guides and menus, using synthetic speech, cost between £30.00 and £102.12.

A portable lightweight, pocket sized, DAISY and MP3 player with built-in microphone for voice note-taking costs around £250 to £300.

Screen reading software like JAWS and Supernova cost in excess of £500, usually as much as £1000.

Audio labellers, for example to help label kitchen items, cost around £75. Braille paper is considerably cheaper but someone like Sarah (case study 10) would still be replenishing her stocks at around £11 a time.

4.68 Then there are the many other items blind and partially sighted people rely on and use to access information and communicate, not necessarily thought of in the same bracket as Braille paper and access technology, but items like talking watches

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and cash note detectors, which will usually cost £23. Accessible, specially adapted mobile phones usually cost considerably more. These often prove indispensable for blind and partially sighted people travelling to unfamiliar places or going out to meet friends, because locating your exact destination will often involve having access to all the relevant information through your mobile phone. This helps blind and partially sighted people to complete their journey. A full list of typical and additional costs is set out in Appendix 3.

4.69 Our interviewees told us:

“The costs of these items are prohibitive... I cannot afford special aids and gadgets” (DLA claimant who is blind receiving middle rate care).

“My DLA does not cover all the extra costs associated with my sight loss, for example I need extremely expensive glasses and a spare set as well” (DLA claimant who is partially sighted receiving lowest rate care).

“I am a Braille user. My eye condition has deteriorated and I find I am more dependent on sighted people than I was when I first claimed DLA. [In terms of shopping] Co-op shops tend to have more Braille on their own brand items, but this is a more expensive shop, perhaps another thirty per cent added on cost? I need computer access software to manage my finances online. I use some of the DLA towards the cost of this. Possibly about £8 a week when averaged out. Then there are additional costs – for example, software for scanners” (DLA claimant who is blind receiving middle rate care).

“My spectacles cost a lot more because they are adapted for me, even with NHS vouchers. I am looking to buy equipment to read out printed information. This will cost £2,000” (DLA claimant who is blind receiving lowest rate care).

“I find it very difficult to use a computer screen because it unsettles my eyesight problems. It is sometimes very difficult for me to see text on a screen. I ask my wife to go through my letters with me. Because of a recent cut in my ESA I cannot afford specialist software or other aids” (DLA claimant who is partially sighted receiving lowest rate care).

“I use magnification software on my computer and a portable magnifier but this is difficult to use for a long period. I have just had to pay for a repair to my magnifier at £30. The

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software costs £800” (DLA claimant who is blind receiving middle rate care).

“I am a Braille user, but I don’t frequently find Braille on everyday items. It’s inconsistent and often limited, so for example there are no Braille instructions on how to take my medicine” (DLA claimant who is blind receiving middle rate care).

And from our 2010-11 research:

"I couldn’t buy a bog standard phone as I wished because it needed to be a smart phone which could operate the TALKS software I need to read texts. My phone cost me over £300, about £250 more than I would have liked to have spent for the standard pay-as-you-go phone" (Mrs. James, middle rate care).

"I do occasionally pay for someone to help with correspondence when it becomes too overwhelming. I do not read for pleasure and miss out on information and involvement in the local community” (Mrs. Stewart, middle rate care).

4.70 It is hard to do justice to the many different issues that are touched on here. Our main concerns include:

Assumptions that Braille is a frequently used or available reading format.

Assumptions about the level to which a blind person adapts as they make adjustments and purchase aids - in fact the costs are usually ongoing, in terms of repairs and upgrading software. The pace of technological change can act as a further barrier - as new gadgets come out, some, far from being a luxury, are indispensable but very expensive.

The assumption that all types of spectacles should be treated the same in the context of Activity 7.

Perhaps most striking of all, the many diverse ways in which blind and partially sighted people access information, the huge costs often attached and the discrepancy highlighted in terms of their needs and the emphasis placed on accessing written information within the draft criteria, since the DWP proposes people will only score four points.

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4.71 We recommend that specialist spectacles blind and partially sighted people need so they can make use of their residual vision and in some cases still access limited amounts of written information should be separated out from spectacles commonly available to sighted people. If claimants use specialist spectacles to access information these should be considered an aid or appliance for the purposes of fulfilling descriptor (b).

4.72 We envisage:

Partially sighted people will at the very least score two points under descriptor (b) on “needs to use an aid or appliance”. The descriptor would consider specialist spectacles within its definition of aids.

Blind people would more likely than not score eight points under descriptor (d), with an improved weighting given to “accessing written information”.

This would take into account the considerable extra costs involved, the frequency with which people need assistance and the many different ways in which people need this assistance, not just having correspondence read out to them, but help with accessing their preferred reading format independently.

If Activities like “preparing food and drink” (Activity 1) and “making financial decisions” (Activity 9) are not revised to reflect the difficulties blind and partially sighted people experience accessing information, for example when they go food shopping, then eight points seems a fair and logical weighting to account for these extra difficulties.

If Activities 6 on “dressing and undressing” and 9 on “making financial decisions” are not revised to reflect the difficulties blind and partially sighted people experience accessing information, for example when they need to select appropriate clothing to buy, again eight points seems a fair and logical weighting.

4.73 Engaging socially (Activity 8): In the explanatory note to support the second draft of the assessment regulations8, Activity 8, “engaging socially”, is defined thus: it considers “an individual’s ability to engage socially, which means to interact with others in a

8 Personal Independence Payment: second draft of assessment criteria (explanatory note), DWP, Nov. 2011.

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contextually and socially appropriate manner, understand body language and establish relationships”. Descriptor (c) would appear to capture many blind and partially sighted people’s needs, since they need social support (from a person experienced in assisting them to engage in social situations) to “interact with others... understand body language and establish relationships”. Therefore we are left puzzled and disappointed that case studies 10 and 11 (Sarah and Bob) do not score points under this activity.

4.74 DWP officials have justified this in terms of Sarah and Bob's cognitive ability to engage socially, presumably since many blind and partially sighted people would know how to interact in a contextually and socially appropriate manner. Again, we fail to understand how this is fair because it discriminates against someone on the basis of their impairment. If you have a cognitive impairment and cannot interact in a contextually and socially appropriate manner you will score points. If you have a visual impairment and otherwise fulfil the criteria, so for example not being able to understand body language (since you cannot see it to detect it) or you have problems identifying which people are in a room when you walk into it, you score zero points. Not being able to see when you enter unfamiliar environments obviously affects your ability to interact with others and establish relationships. Activity 8 has been designed to restrict who can score points. It does not consider the individual, it considers the impairment. This is patently unfair. It is also perverse.

4.75 Many people with little or no sight need social support to engage socially. They sometimes need personal assistance or a carer to accompany them on trips, so for example so they can find a railway station ticket attendant, seek help with getting through the ticket barriers or buy a ticket. If you are blind or partially sighted you might need family members or friends to support you when you walk into a new room at a party so you know who is in the room and where they are sitting or standing.

4.76 There is a wide range of situations where blind and partially sighted people require social support of one kind or another and nearly all these examples have costs attached. If the support is not available (so for instance a blind person walks down a street unaided) they will not be able to engage socially in the way the DWP describes. They will most likely pass acquaintances or neighbours without noticing they are there.

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4.77 We set out the typical costs of hiring a personal assistant earlier on in this submission. Hiring a personal assistant for a five hour trip to the cinema and a restaurant for dinner afterwards would cost around £30.95 if all you were paying was the minimum wage. If you do not hire a personal assistant, perhaps a friend would take you out, for example to a concert or play at the theatre. What blind and partially sighted people often tell us they would do with their DLA is help towards their friend's costs, so for example with their travel or by purchasing tickets for their friend to accompany them to an event.

4.78 Our interviewees told us:

“I tend to need social support going out, even going to places I am familiar with. I can’t read menus or prices and I need support going to the cinema… I am more independent since leaving home and living on my own, this has meant I do more, but that costs me more” (DLA claimant who is blind receiving middle rate care).

“I like to go swimming, to the gym, St. John’s Ambulance cadets and meet up with friends. But I need a guide to support me with these activities several times a week. This typically costs £20 a week... my needs have increased over the years. I need someone to accompany me but with the current level of support I am independent” (DLA claimant who is blind receiving higher rate care).

“The costs of getting extra support have stopped me from going out. I’ve had to stop attending a local theatre group because a friend who took me and helped me at the group has now left. That used to cost £15 per week” (DLA claimant who is partially sighted receiving lowest rate care).

“I need social support to guide me to new places and keep an eye on me to make sure I’m safe. I had to drop out of my gym membership because I was unable to do it on my own and I would have had to pay a lot extra for a personal trainer to practically use the gym” (DLA claimant who is blind receiving lowest rate care).

“My life was very limited until I was awarded the higher rate mobility component because of my severe visual impairment. Now I can go and visit my father in a nearby town which I wasn’t able to do so easily in the past... I receive weekly support from a sighted assistant to get out of the house but if

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I am taken out by a family member or friend, I contribute towards their fuel costs” (DLA claimant who is blind receiving middle rate care).

“I like to visit a local cafe for lunch and go to parties with friends, but I need help from someone to do this one or two times a week. They accompany me and guide me to help me get round, help me choose things on a menu. I pay money towards their petrol money and this costs me £30 a week” (DLA claimant who is blind receiving middle rate care).

“I pay refreshments and tickets for carers. Effectively I pay double when going out, for them and for me. This costs £15 plus the additional fuel costs. I have different carers, which costs £30 to £40 per week overall. It all adds up, the refreshments, tickets... I would like to go out a lot more but I cannot afford it” (DLA claimant who is blind receiving middle rate care).

“I would like to take part in bowling and swimming but can’t do this very often. I need this support three or four times per week. I do sometimes use a personal assistant, so for example I went camping for two nights and it cost £150. I have had to stop certain things. I had to miss out on a school trip with my daughter because I could not afford to pay for a companion and their travel costs” (DLA claimant who is blind receiving middle rate care).

4.79 We hope we have been able to evidence the typical costs people with little or no sight must accept if they are going to participate in society on equal terms. If an assessment which purports to assess people’s ability to participate failed to capture the needs of blind and partially sighted people, this would surely make a mockery of PIP.

4.80 A wide range of issues has emerged here, through our research with existing DLA claimants. Our main observations and concerns relate to:

the extent to which blind and partially sighted people restrict social activities following a loss of or deterioration in their eyesight;

the extent to which choosing to become more independent and apparently “adapt” carries with it considerable extra costs;

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the extensive but hidden costs involved in rehabilitation, confidence training and independent living skills, by no means a guaranteed service at local authority level;

and finally the inadequacy of the existing criteria to account for these high costs.

4.81 It is interesting to look at the case studies once again. Sarah “has a wide circle of friends and a good social life”. Many blind and partially sighted people will indeed find themselves in similar circumstances but to make those friends and maintain that social life you need to overcome greater barriers and pay more than sighted people. Even a "simple" trip to the local pub can involve a significant degree of pre-planning.

4.82 It should be recognised that deafblind people face particular difficulties in this context - understanding the layout of a room, the wider environment and how groups of people are behaving together. Deafblind people can find it very difficult to be proactive in social situations and are often partially or totally excluded. They often decide to limit their social activities as a consequence.

4.83 We envisage that blind and partially sighted people would normally fulfil the criteria for descriptor (c), which involves needing social support to engage socially. This would attract four points.

4.84 We recommend that DWP reconsider who can score points under Activity 8 so that it is not restricted to people with cognitive impairments.

4.85 Making financial decisions (Activity 9): If the PIP assessment is to treat individuals as individuals, no matter what impairment they have, then if they fit a certain descriptor, they should score points against it. We are therefore unclear why Bob and Sarah score zero points under the Activity on “making financial decisions”. DWP officials have explained this in terms of the claimant’s cognitive ability to achieve these activities. We cannot reconcile this with our knowledge that both case studies – particularly Bob – cannot undertake a number of basic activities unaided. Nevertheless, in this area of life they are judged not to have a “limited ability” and their needs are deemed less severe.

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4.86 On page 36 of the November 2011 Explanatory note9 the DWP states that the new activity “looks beyond purchasing food to budgeting and financial decisions more widely”. The note then goes on to say that the change in focus should enable a more accurate assessment of ability to manage everyday finances. On initial analysis, this is to be welcomed and would appear to be an improvement on Activity 1 in the May 2011 set of draft regulations, “planning and buying food and drink”.

4.87 Now we find ourselves in a situation where difficulties with planning and buying food and drink have been stripped out of the criteria, but instead of offering us an improved activity, the regulations in fact include a slimmed down interpretation of what it involves to “manage financial decisions”.

4.88 Again the problem is not so much in the descriptors themselves, although we would introduce the concept of needing assistance. The problem stems from the narrow definition of “making financial decisions” so it is concerned with the mental, intellectual and cognitive difficulties involved. Descriptors will not in any circumstances apply where the individual’s barrier happens to be sensory loss.

4.89 In this context, blind and partially sighted people experience barriers to independence because their difficulties in seeing prevent them from making basic financial decisions and transactions, at least in a timely manner. Recent research from RNIB highlights the extent to which mainstream banking services remain out of reach to blind and partially sighted customers. For 80 per cent of the public, using an ATM is the fastest and most convenient way to obtain cash. This still is not the case for the vast majority of blind and partially sighted people. Only 11 per cent of blind and partially sighted people say they use cash machines unaided. In the United States, around one in four cash machines “talk”. In the UK it is about one in a thousand10.

9 Personal Independence Payment: second draft of assessment criteria (explanatory note), DWP, Nov. 2011.10 Barriers to financial inclusion: factors affecting the independent use of banking services for blind and partially sighted people, RNIB, 2011.

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4.90 In addition to this, it is harder to calculate budgets where all the available information is written down and inaccessible. It is also harder to manage and pay bills or plan future purchases where all the relevant information is inaccessible. Calculating the cost of goods, either in a shop or online, is harder because you cannot always see the prices. You will often need assistance to make financial decisions about what to buy and what not to buy. Unless you have a special aid or ask for assistance, it often proves difficult knowing how much your shopping adds up to when you reach the checkout. The same applies when you check what notes or change you have in your wallet, whether you are handing over the correct money and whether you have been given too much or have been short changed.

4.91 Facts11

75 per cent of respondents to a recent RNIB questionnaire needed help to do their shopping.

45 per cent of respondents needed help to manage their money.

As with travel, the most common form of support used was provided by friends and family. 81 per cent of respondents used this support for shopping, and 62 per cent used it to help manage their money.

Only 57 per cent of respondents of working age were able to take cash out at an ATM.

4.92 The following tables further illustrate the point:

11 The information is from RNIB research with 167 blind and partially sighted people, 2011/12.

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Table: Frequency of participants reporting needing help to manage their money due to sight loss

18-29 yearsper cent

30-49 yearsPer cent

50-64 yearsper cent

Yes [need help]

19 33 43

No 81 67 57(n) (31) (39) (37)

Table: Frequency of managing money assistance from friends and family

18-29 yearsper cent

30-49 yearsper cent

50-64 yearsper cent

Always 16 23 30Sometimes 48 21 41Never 35 56 30(n) (31) (39) (37)

Table: Frequency of participants reporting needing help to do their shopping due to sight loss

18-29 yearsper cent

30-49 yearsPer cent

50-64 yearsper cent

Yes 74 77 86No 26 23 14(n) (31) (39) (37)

Table: Frequency of shopping assistance from friends and family

18-29 yearsper cent

30-49 yearsPer cent

50-64 yearsper cent

Always 16 21 30Sometimes 68 62 59Never 16 18 11(n) (31) (39) (37)

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4.93 Our interviewees told us:

“I won’t use online banking as it’s difficult to access and I fear being defrauded. If I go to the bank my wife has to take me and pay for a taxi... my wife would be employed if she didn’t have these caring responsibilities” (DLA claimant who is blind receiving middle rate care).

“I have restricted access to discounts from online services and because of limits to what can be displayed on my computer screen and the inaccessible layout of websites. This means I lose one per cent on savings plus higher amounts for missing out on discounts on other purchases” (DLA claimant who is blind receiving middle rate care).

“My husband has to do everything to do with my finances... I am more reliant on my husband but we are on a very low income and my husband has to work part time because of his caring responsibilities. This is a huge hidden cost” (DLA claimant who is blind receiving lowest rate care).

“As I can’t do anything online less attractive savings rates are available to me. I have to always go into the bank and need my carer (daughter) to accompany me. I pay her about £10 per week” (DLA claimant who is partially sighted receiving lowest rate care).

“When I go out shopping I can’t see the prices and can’t take advantage of discounts or special offers. I can’t see small print to read so can be over-charged choosing to buy more expensive items... I rely on using my phone to organise direct debits. I would like to use accessible software online but it is too costly” (DLA claimant who is blind receiving lowest rate care).

“I use magnification software to do banking online. I try to use ATMs with certain banks whose screens are easier to use but these are not always easy to come by” (DLA claimant who is blind receiving middle rate care).

4.94 The costs of using specialist software to bank from home are seen as a more convenient and practical option for some. However, this comes with costs attached, including access technology which as we know from the costs set out in the section on “communicating” above, can run into hundreds and sometimes thousands of pounds.

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4.95 A number of our interviewees told us that they found access technology too expensive, so they find themselves reliant on friends, carers or family members taking them to the bank. This has a number of hidden costs, including passing on petrol money for the lift to get to the bank - which is particularly expensive if you live in a rural area.

4.96 Other hidden costs include family members giving up work or changing work patterns to take up caring responsibilities.

4.97 As noted above, it is not uncommon for people with little or no sight to use their DLA to pay friends and relatives for the cost of fuel when given a lift. This does not fall within the scope of Activity 9, or indeed any other Activity. This raises a serious question, which is how to remedy one of the major shortcomings in the draft regulations - apparently no reference to the extra costs blind and partially sighted people and other disabled people experience accessing basic services like their bank. If someone cannot reach their bank by public transport or by walking, will their need for extra support be addressed under the mobility Activities or Activity 9 on “making financial decisions”?

4.98 Some of our interviewees talked about their wish not to impose on loved ones, which sometimes means delaying going to the bank or deferring the decision to purchase basic household items.

4.99 We recommend that the definition of “making financial decisions” should be broadened out to take into account the barriers blind and partially sighted people experience. In other words “making financial decisions” should be revised so that it:

(a) compensates for a lack of support provided with purchasing food and clothes under Activities 1 and 6; or

(b) compensates for poor weighting for assistance with accessing written information (descriptor (d)) under Activity 7; or

(c) independent of any other developments, includes a new descriptor or descriptors on needing assistance to make complex or simple financial decisions; and

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(d) taking into account and building on this last point, the activity deals with all barriers to making financial decisions, not just cognitive, mental and intellectual barriers.

4.100 To recap, if people with little or no sight are unable independently to manage their own finances, so for instance to check their bank account, or calculate what change they have in their purse to buy food items, we can see no reason why they should not be able to score points under Activity 9. They cannot make financial decisions unaided.

4.101 Incidentally, this is rarely about accessing written information. Knowing what type of coins or notes you have in your purse or being able to independently access a bank balance set out in pounds and pence at no stage involves accessing written information. This is why we dispute the DWP’s logic that these barriers are better addressed through Activity 7 on “communicating” which deals with a very important but nonetheless discrete set of issues.

4.102 We recommend that Activity 9 should include two new descriptors, but neatly set out within the existing sequence of points so that “needs assistance to make complex financial decisions”, like prompting, scores two points. We recommend that “needs assistance to make simple financial decisions”, like prompting, scores four points.

4.103 We envisage that a partially sighted person would normally score two points under this Activity, taking into account the multiple barriers they will face in terms of receiving accessible bank statements, bills and other materials vital for managing household budgets. Correspondence will usually need to be read out; materials will need to be magnified or enlarged. Assistance from another person will usually be required, but perhaps more likely for complex decisions.

4.104 A blind person would normally score four points under this Activity, taking into account the multiple barriers and extra costs they will face in terms of calculating the cost of goods in supermarkets and other shops, calculating change required following purchases, being able to use chip-and-pin machines and accessing ATMs. Assistance from another person will almost always be required, even for simple tasks.

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Q.2 What are your views on the weightings and entitlement thresholds for the daily living activities?

4.105 The thresholds indicate that a partially sighted person would struggle to qualify for the standard daily living component and could potentially qualify for the mobility component at the standard rate only, whereas currently under DLA they would qualify for low rates of both care and mobility. Moreover both case studies 10 and 11 feature a severely sight impaired person, so the assumption would be that a partially sighted person would score fewer points.

4.106 We have set out above a detailed account of our observations and reservations, with a number of specific recommendations. The latter are summarised in section 5 below.

Q.3 What are your views on the latest draft mobility activities?

4.107 Planning and following a journey and Moving around (Activities 10 and 11): There are two activities covered by the assessment criteria for mobility. The first is "planning and following a journey" and the second is "moving around". Since both these activities are so inextricably linked we have considered them alongside one another. Our analysis of the mobility activities is that many people with a severe visual impairment will lose their entitlement to the higher/ enhanced rate mobility component of DLA/ PIP after a period of time.

4.108 Under Activity 10, "planning and following a journey", there are five descriptors and a person with sight loss scores eight points if they need "supervision, prompting or a support dog12 to follow a journey to an unfamiliar destination" (descriptor (c)). If they need "supervision, prompting or a support dog to follow a journey to a familiar destination" (descriptor (e)) they will score 15 points. Clearly much depends upon the interpretation of what is a "journey to a familiar destination" and whether someone needs "supervision, prompting or a support dog" to follow such a journey. We are unconvinced the issue is whether a destination is familiar or unfamiliar. The more significant issue is whether the journey or

12 Please note our observation at para. 1.8 of this response concerning the terminology here.

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route is familiar or unfamiliar (although see paras. 4.120-125 below concerning our reservations as to how far the “familiarity” issue is relevant at all).

4.109 Under "moving around" there are seven descriptors. Someone who "can move at least 200 metres either unaided or with an aid/ appliance other than a wheelchair" scores zero points. At the other end of the scale, someone who cannot move up to 50 metres without using a wheelchair scores 12 points and thus becomes entitled to the enhanced rate of PIP mobility. However, all these descriptors relate to whether someone is physically able to move around, thus excluding someone who is "just" blind.

4.110 Our concerns about the mobility criteria are based upon the two case studies of people with a severe visual impairment. Bob (case study 11) has recently lost his sight. "He cannot go out alone without supervision as he cannot yet orientate himself and has tripped and fallen a few times". Because of this he receives fifteen points under "planning and following a journey" (descriptor (e) (i)) and is entitled to the enhanced rate mobility component. Incidentally, falls are common amongst people with visual impairments. In 2009, estimates of the total direct health care system cost of falls related to blindness and partial sight and for adults was £25.1 million. Around one in ten falls that result in hospital admissions occur in individuals with visual impairment13

4.111 The second case study, Sarah (case study 10) has been blind for many years. "She enjoys going to concerts and will travel to familiar places on her own but needs another person if she is going somewhere unfamiliar, particularly if that involves public transport". Because she can complete some familiar journeys on her own, Sarah receives eight points and is only awarded the standard rate mobility component.

4.112 What Sarah's case study fails to mention is that she will currently be receiving the higher rate mobility component of DLA and this will be making a significant contribution to her ability to get out and about independently. It may well be the case that she is only able to complete some familiar journeys because she can

13 'Falls - costs, numbers and links with visual impairment', RNIB, 2011.

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afford to use a taxi. Some 12,000 people like Sarah are currently receiving the higher rate mobility component and there are three strong reasons why this entitlement should continue under PIP.

4.113 One of the main drivers for the introduction of PIP is to ensure that the benefit is awarded on the basis of the impact of the impairment or health condition rather than the impairment itself. Given this objective it would be inconsistent to award the higher rate to a wheelchair user but not to someone who has "no useful sight for orientation purposes". However, this is what the current draft regulations would do. As is made clear in the January 2012 PIP consultation document14, "those who need a wheelchair (to move around) will receive the enhanced rate, reflecting the additional costs, barriers and overall levels of need which often accompany wheelchair use". However, blind people face additional costs, barriers and needs that are just as great and they are ongoing too.

4.114 The DLA system has been largely untouched since it was introduced in 1992. This is one of the main purported reasons for reform – to introduce a new benefit fit for the 21st Century. However, in the case of severe visual impairment, there has already been reform. In 2009, with all-Party support, an amendment to the Welfare Reform Bill was passed that allowed people with “no useful sight for orientation purposes” to claim the higher rate mobility component of DLA. This corrected a long standing anomaly in the DLA system that meant blind people who have some of the greatest difficulties getting out and about independently could not claim the higher rate.

4.115 From April 2011, people with a severe visual impairment became entitled to claim the higher rate mobility component of DLA. Currently some 12,000 people are receiving the extra £33.50 per week. It would be very hard for them and the wider public to understand if this recent reform to the DLA system, agreed with all-Party support, was overturned just a couple of years later.

4.116 The separate treatment of blind and partially sighted people with different types of aids or appliances is illogical and unfair. Sometimes partially sighted people (people with little sight) use

14 Personal Independence Payment: assessment thresholds and consultation, DWP, January 2012, para. 3.7.

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guide dogs. It does not mean their needs are necessarily different to those of a blind person who is reliant on a white stick. Some blind and partially sighted people are unable to take up the opportunity of applying for a guide dog due to problems with mobility. If the PIP assessment is truly to judge individuals as individuals, Activity 10 must acknowledge the way in which guide dogs and other orientation aids such as long canes fulfil the same function: to help someone who is blind or partially sighted safely and reliably to navigate and orientate themselves as they make a journey. Both sets of individuals, those with guide dogs and those reliant on other orientation aids, will frequently encounter the same disruptions and difficulties including wheelie bins and cars parked on pavements, rotating cones which don't work at pedestrian crossings and so on.

4.117 There is a strong focus in the design of PIP on change, both in the condition/ impairment and in how the person adapts to their situation over time. This is reflected in the case studies. As noted above, there is an expectation of high initial awards, but that people will "adapt" or obtain equipment or reasonable adjustments, so they are in less need of support when re-assessed. In the case of sight loss we would not normally expect to see improvements in vision. Once you have lost your sight (for example due to glaucoma or diabetic retinopathy) you cannot get it back.

4.118 Again as noted above, regardless of the length of time a person has lived with sight loss, the difficulties and barriers remain. The impact of sight loss does not diminish and our experience is often that adaptation actually equates to restriction of people's previous activities. Conversely, a disabled person’s increased confidence and capacity to get out of the house will be very likely to lead to increased transport costs, notably taxis.

4.119 The two case studies of people with sight loss (Bob and Sarah) appear to have been chosen to focus attention on adaptation and change. It is positive to see Bob, who has recently lost his sight, getting the enhanced rate for both daily living and mobility. However, if he receives specialist mobility training and can make his way to the local shops, the enhanced mobility component might well be lost at a re-assessment. This has happened to Sarah who has been blind for many years and has learned to travel to familiar places on her own. She would currently

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be receiving the higher rate mobility component of DLA but will lose this when she is assessed for PIP.

4.120 The flaw here is that for a blind person a familiar route can all too quickly become an unfamiliar and hazardous one. It can change at any time due to travel disruption, street works, A-boards, wheelie bins, cars parked on pavements. The weather can also have a major impact if you are blind. Snow muffles all sounds, completely changing the aural landscape and also physically disguises kerbs and pathway edges. Similarly strong winds and wet surfaces due to rain can create such aural differences that navigation becomes nigh on impossible. Icy surfaces can be dangerous.

4.121 Perhaps the distinction between a familiar and unfamiliar journey is unreal because the extra costs are often the same whether the route is familiar or not.

4.122 In 2009, Parliament recognised the barriers to independent travel for people with "no useful sight for orientation purposes". The challenges around orientation remain as strong today as they were three years ago. Accessing public transport also remains as much of a challenge now as it was in 2009. Blind people will continue to rely heavily on taxis to get out and about safely and independently. Access to the enhanced rate of PIP is vital.

4.123 Our interviewees told us that journeys were difficult when a range of activities were factored in – careful pre-planning, reading street signs, asking directions, using maps and coping with the stress of it all. It was not just a matter of paying extra for taxis.

4.124 It is also striking that whatever aid you have, indeed even if you do not use an aid at all, no two journeys are ever the same. What came across perhaps most strongly was the inherent unpredictability of a journey outdoors, no matter how close or far the destination, no matter how familiar the route. There will always be extra costs and there will always be barriers, both in terms of planning and following a journey but also moving around.

4.125 Our interviewees told us: “I am a long cane user. I need taxis and help from other

people being guided and also with planning a journey. That’s especially true if I go somewhere unfamiliar but I will

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sometimes still need support with guiding or taxis if I go to a “familiar” destination. It very much depends where it is... if I lost my higher rate mobility I would lose our family vehicle, which would really change my life. I would have to do a lot less for myself and sit at home doing nothing... my DLA money doesn’t even cover all the extra costs now. There is the cost of taxis, not getting sufficient services from the local authority so I am having to subsidise from my own income and limit my way of life” (DLA claimant who is blind receiving higher rate mobility).

“I am a guide dog owner. Taxis I would calculate cost me around £75 per week... I am more dependent on sighted people now as my eyesight has deteriorated. DLA does not cover all the extra costs. If I were to lose some of my DLA it would mean being unable to visit my very ill father” (DLA claimant who is blind receiving higher rate mobility).

“I am a long cane user but I need assistance to do this. I rely on sighted guidance and taxis when travelling on unfamiliar routes. This would cost me around £12 per week, then there are the costs of travelling to familiar destinations which I use taxis or the family car for. This costs a further £9 or £10 per week. I am also experiencing hearing loss now so being out in traffic I find it more tiring than I did being visually impaired... I find living in a rural area more costly” (DLA claimant who is blind receiving higher rate mobility).

“I don’t own a guide dog or a long cane but I need a lot of help travelling to both unfamiliar and familiar destinations. I need someone to guide me to the place. I can’t see any obstacles and can’t read any street signs. It’s worse in poor light conditions so if travelling when dark I will need a taxi as I cannot even see short distances. This typically costs £20 per week. My condition has got worse; it will eventually lead to total blindness. I guess I am more independent in some ways since leaving home and living on my own and having to learn how to use appliances” (DLA claimant who is blind receiving higher rate mobility).

“I need a lot of help when travelling to an unfamiliar destination. I need transport and a guide; I have problems with stairs and navigating indoors and outdoors. This typically costs £20 per week for taxis... my eyesight has deteriorated and I feel less independent because my eyesight is getting worse. I work part time, but would go full

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time if not visually impaired. My work hours have been cut drastically because of my eyesight” (DLA claimant who is partially sighted receiving lower rate mobility).

“I don’t have a guide dog or long cane. But my sight is worse in bright light. To get to unfamiliar places I need significant help pre-planning, help making the journey itself, taxis, help getting on and off public transport. I restructure journeys as far as I can to avoid difficulties but it all costs £20 to £30 per week extra for this costly travel. I tend to avoid making too many journeys because of additional problems caused to my sight by being in bright light such as headaches... I feel less independent than I did. I have to rely more on other people now as my eyesight is slightly worse” (DLA claimant who is partially sighted receiving lower rate mobility).

“I am a long cane user and I mainly rely on taxis and sighted guidance. The taxis cost around £60 per week, avoiding obstacles is always the biggest barrier...I would like to go to the local blind club to meet people who are in a similar situation but can’t afford to... I feel just like I always did. I always have to rely on others” (DLA claimant who is blind receiving lower rate mobility).

And from our 2010-11 research:

“I use my lower rate mobility for taxis to aid my independence where a bus is not available or when it is dark and buses do not run to where I am going. [Without DLA] I would miss being independent and [not] having to rely on my friends, which would put a burden on them and [cause] frustration to myself, being isolated and not being able to get to appointments and going out with friends because of the lack of public transport” (Ms. Fisher, lower rate mobility).

“My DLA goes on transport. I can’t roll up to a shop and load up the car with shopping. If anything bulky is bought I either have to pay for a taxi or pay the extra cost of delivery. My family are scattered to the four winds so no help available there” (Ms. Jenkins, lowest rate care, lower rate mobility).

“I am 47 and get the two lowest rates of DLA (care and mobility). I get a travel pass but no other support from my local council. My DLA helps towards taxi and mobility costs, especially getting around at night or in unfamiliar locations. Help with shopping and cleaning. Being able to get out and

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about and lead a sociable life, which I feel is my human right, regardless of my disability. I would lead a very unfulfilled and lonely life [otherwise]. The [proposed] loss of the lower level of DLA is a major concern to me as that is all I receive. [Without DLA] I would be surviving, not living” (Ms. Reeken, lowest rate care, lower rate mobility).

4.126 We recommend that descriptor (c) on following a journey to an unfamiliar destination includes not only “supervision, prompting or a guide dog or other assistance dog15” but assistance and an orientation aid too.

4.127 We have expressed our reservations as to how far the “familiarity” issue is relevant at all. At the very least, we recommend the focus on familiar and unfamiliar destinations is altered to focus on familiar and unfamiliar journeys or routes instead.

4.128 We see no practical difference between guide dogs/ other assistance dogs and orientation aids, at least not in terms of their functional impacts. In this context they help a visually impaired person safely, reliably and repeatedly to plan and follow a journey in a timely manner. Orientation aids could be defined as “specialist aids or appliances to assist a person with a sensory impairment”. The key issue here is independent orientation, which is recognised within DLA criteria but is disappointingly absent from the draft regulations. A focus on independent orientation would solve some of the problems with the two mobility activities which focus on an individual’s “physical ability” to move around but yet totally ignore the orientation skills needed to get from A to B.

4.129 We would also like to add that technological advances will not always provide blind and partially sighted people with the breakthrough aids or tools that facilitate independent living. Even where they have a transformative effect, aids like GPS and other appliances will usually cost considerable sums of money. Only three per cent of respondents in our recent research exercise with 167 blind and partially sighted people were able to plan a journey using a mobile phone. Even among those of working age, only 16

15 Please note our observation at para. 1.8 of this response concerning the terminology here.

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per cent reported that they were able to utilise such technology by themselves.

4.130 We envisage that: Partially sighted people would at least fulfil the criteria for

descriptor (c) in Activity 10, “planning and following a journey” on needing supervision or a guide dog to travel to an unfamiliar destination. Alternatively they would need their journey to an unfamiliar destination to have been entirely planned by another person, thus scoring them eight points. Not owning a guide dog should not place you at a disadvantage, assuming you required an “orientation aid” or "assistance" to safely and reliably follow an unfamiliar route.

Destinations would no longer be the key issue: an individual’s journey or route would be a better criterion. Reaching “familiar destinations” often involves following routes full of surprise obstacles, disruptions and hazards. Familiar and unfamiliar journeys would at the very least need a tight definition but even then the criteria need to address the unpredictability inherent in any journey outdoors.

Blind people would normally fulfil the criteria for descriptor (e) in Activity 10 on needing “supervision, prompting or a guide dog16 or orientation aid to follow a journey to a familiar destination” (or as we have suggested, on a familiar route). Alternatively they would score the 15 points awarded under this descriptor if their journey on a familiar route needs to have been planned entirely by another person.

Finally, our expectation is that no matter how long someone has been living with sight loss and no matter how long they have been claiming PIP, if they have ongoing difficulties planning and following a journey or moving around, it is those difficulties and costs that should dictate what rate of benefit they continue to receive. We envisage only very few severely sight impaired people ever reaching a stage where their mobility needs improve. Their costs are very unlikely to drop over time. This means we envisage that severely sight impaired people will continue to receive the enhanced rate of PIP mobility for as long as they need it, which in the vast majority of cases will be for the rest of their lives.

16 Again, please note our observation at para. 1.8 of this response concerning terminology.

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Q.4 What are your views on the weightings and entitlement thresholds for the mobility activities?

4.131 As noted at 4.105 above, the thresholds indicate that a partially sighted person could potentially qualify for the mobility component at the standard rate only and would struggle to qualify for the standard daily living component, whereas currently under DLA they would qualify for low rates of both care and mobility. Moreover both case studies 10 and 11 feature a severely sight impaired person, so the assumption would be that a partially sighted person would score fewer points.

4.132 Again, we have set out above a detailed account of our observations and reservations, with some specific recommendations. The latter are summarised in section 5 below.

Q.5 What are your views on how the regulations work regarding benefit entitlement?

4.133 A number of observations and reservations have been set out above.

4.134 Another issue relates to short notice of appointments, delays in providing information in accessible formats and not allowing reading time. These problems arose during the recent testing process conducted by the DWP with a number of claimants and it is important that the lessons are learned. Such problems significantly increase stress and anxiety.

4.135 We believe that people should be given at least 6 weeks to submit the PIP application form and written evidence and the regulations should be amended accordingly under Part 2 (5) (2).

4.136 We strongly disagree that under Part 2 (7) (3) individuals should only be given 7 days’ written warning of an appointment for a face-to-face consultation. This should be at least 14 days.

4.137 Part 2 (7) (4) should also be amended to state explicitly that this written warning must have been sent in the claimant’s preferred written format (where this has been indicated on the application form).

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4.138 Part 2 (8) should also be amended to cover provision of written notice in an individual’s preferred written format (where this has been indicated); the claimant’s ability to answer the telephone; and provision of communication support at the consultation, when determining whether the claimant has good reason for not attending a consultation.

Q.6 What are your views on how we are dealing with fluctuating conditions?

4.139 We welcome the definition of “repeatedly” as meaning that a task should be completed as often as required during the day. We believe this is an improvement on DLA where an individual must be unable to complete an activity for the majority of the time.

4.140 However, for many people with sensory impairments, seasonal changes have a huge impact on their ability to get around and communicate. For example, low sun and glare in winter can make a journey very difficult when it would be much more easily completed in summer. Many people with Usher Syndrome have night blindness - they are consequently unable to move around at night, which is particularly limiting in winter, when it is dark or getting dark before or as the working day is ending.

4.141 We therefore propose that individuals should be considered unable to perform an activity where seasonal changes mean they are unable to complete that activity during a season.

Q.7 What are your views on the definitions of “safely”, “timely”, “repeatedly” and “in a timely” manner?

4.142 The wording of the question in the consultation document seems to be incorrect here. The first mention of the word “timely” should presumably read “reliably”.

4.143 “Reliably”: it is currently unclear how the “reasonable standard” will be defined. We believe this should be defined as the same standard that a non-disabled individual would expect according to the activity - for example a social activity, training activity or job interview.

4.144 “Repeatedly”: see our response to Question 6.

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Q.8 What are your views on the definitions in the regulations?

4.145 “Prompting”: the definition must be clear that this applies for “some of the time” rather than the majority of the time.

4.146 We are very concerned that some of the kinds of support that people with sensory impairments need will not currently fit tidily within the defined categories of assistance, prompting or supervision.

4.147 This is particularly concerning in relation to support people might need that may not be regarded as assistance, as it may not be seen as “physical intervention”. For example, somebody may need a situation described to them or a message relayed to them. An instance would be where there is an unexpected situation at a railway station: a person with a sensory impairment might need someone to repeat announcements or explain the situation. As we understand it, this would not be prompting or supervision, but as it will not involve a physical intervention in the literal sense, there is a danger that it would not be recognised by assessors.

4.148 Under DLA it has been long established that support with seeing and hearing is seen as “attention” for the purposes of DLA and so on a par with “physical” care needs. It is essential that this sort of channel to entitlement is preserved.

Q.9 Do you have any other comments on the draft regulations?

4.149 We do not believe that these criteria are an adequate proxy for assessing the impact of living with sight loss, not least because they miss one of the most important activities with which blind and partially sighted people experience difficulties - maintaining a safe and liveable home environment.

5. Detailed alternative and additional proposals

5.1 This section sets out various policy recommendations:

A whole new Activity, concerned with “maintaining a safe and liveable home environment” with our own suggested descriptors.

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A summary of all our recommendations, including improved definitions for key activities; improved descriptors within existing activities; and improved weightings where this applies and would in our view be logical.

5.2 In the following paragraphs, we set out our proposal for a new Activity - maintaining a safe and liveable home environment (Activity 12).

5.3 Whenever the visual impairment sector examines the draft criteria we note a big hole at the heart of the DWP’s proposals. Maintaining a safe, hygienic home is dealt with inadequately throughout the draft regulations.

5.4 Maintaining a safe and liveable home environment is one of the daily living tasks most fundamental to achieving independence. However, there is no mention of it. This is despite the fact that it is one of the biggest drivers of additional costs for blind and partially sighted people and many other groups of disabled people too (for example, people with neurological conditions, severe mental health problems and learning disabilities). It is also the benchmark by which people are generally assumed to be able to live "independently" rather than in supported or residential facilities.

5.5 By focusing on “maintaining a safe and liveable home environment” –or to use a shorter title, “keeping safe at home” – we seek to recognise the additional barriers for disabled people living in their own homes.

5.6 Encouraging disabled people and people with long-term conditions to live at home for longer is a key policy driver across government. For example the Department of Health prioritises the policy in its various outcomes frameworks. The Department for Communities and Local Government also places a lot of emphasis on independent living at home, for example in its work on “Community Budgets”.

5.7 DLA is the biggest source of help for blind and partially sighted people when it comes to maintaining a clean, safe and hygienic home. Among other things, the money enables people with sight loss to hire cleaners, trades people and assistants to come and undertake basic household tasks they find difficult or impossible to complete on their own. These tasks include but are by no means

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exclusively limited to: vacuuming, mopping the floors, dusting, checking loose wiring and fuses, spotting potential hazards, cleaning windows, changing light bulbs, fixing breakages, spotting and cleaning up leaks, fixing loose carpets and tiles - basically all the household tasks that non-disabled and sighted people take for granted, but blind and partially sighted people struggle with on a daily basis.

5.8 Our group of recent interviewees told us:

"There are a number of other costs I regularly incur which hasn't been touched on here. I used to do a lot of DIY and home maintenance. But now I have to pay people to do this. This costs me several hundreds of pounds a year" (DLA claimant who is partially sighted receiving lowest rate care).

"There are a lot more hidden costs when you live with sight loss like I do. For example, you have to pay for a handyman to do simple things like changing a plug, extra washing around the home in case you've missed bits or just to make sure the house is in fact clean. Then there are the costs of having to pay for someone to do the garden… there are lots of additional costs not dealt with in the questions" (DLA claimant who is blind receiving middle rate care).

"There are higher laundry costs, there are the costs of greater wastage because I find it difficult to judge what amounts of cleaning and household products I need to keep the surfaces clean… there is a greater need for extra help because I am always spilling things, that involves cleaning. Personal hygiene is costlier for someone with sight loss. There are breakages of things like crockery, breaking things around the home, I recently broke a thermostat on a radiator whilst vacuuming… I find I am less independent. Things have become costlier and being out of work affects your self esteem" (DLA claimant who is blind receiving middle rate care).

"There are many things I have to pay for which my DLA money doesn't cover, even domestic appliances which are suitable for visually impaired people cost more. There are lots of hidden costs (for example calling out tradesmen to deal with minor faults, which I am sure a sighted person would do unaided). Like changing a fuse. Living in a rural area is more costly" (DLA claimant who is blind receiving middle rate care).

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"My mother does the cleaning. I can't afford to pay a cleaner. Electricity bills are higher than average because of the need for enhanced lighting. My parents work shifts so they can fit in helping look after me around work. I feel more independent since moving out of my parents’ home but the additional cost is the additional cost of running my own home" (DLA claimant who is blind receiving middle rate care).

And from our 2010-11 research:

"I pay weekly for a private carer to support me with maintaining my home. [This] ensures a standard of hygiene, which I cannot maintain [compared] with sighted peers. It also enables me to have greater time to do essential tasks of daily living which take me considerably longer than sighted peers, such as preparation of meals, laundry, reading and dealing with correspondence. I use my DLA to pay for my higher electricity costs as I have to have lights on more often and cannot use energy saving bulbs. I also have to wash my clothes more often as I cannot see if they are clean. (Mrs. Stewart, middle rate care).

My DLA goes on household tasks that I can’t see enough to do, like decorating, altering clothes, cleaning windows etc. My DLA is pretty important to me now but I couldn’t have done without it when my children were small. Like so many disabled parents, I found myself bringing up my kids as a lone parent. I’ve always worked full time so you can imagine it was always a tough juggling act. I don’t know what I would have done without DLA (Ms. Jenkins, lowest rate care).

"I use DLA to buy the services of a cleaner so that my home remains a comfortable and acceptable place for me and for people to visit" (Mrs. Mercer, rate(s) not given).

"There are other regular outgoings that I cannot choose to [do without] which include handyman and maintenance (a lot of the simple maintenance that a sighted person might undertake such as changing a light bulb in an outside light, I have to pay someone to do); laundry and gardening too" (Mr. Philips, middle rate care).

"I am moving out of my parents' to live on my own so hope to get a cleaner to come in help to keep my home clean and kept up to a good standard" (Ms. Ford, middle rate care).

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5.9 When we spoke to interviewees about the draft criteria, the absence of any activities that address keeping a safe and hygienic home was met with anger and disbelief. Interviewees shared many practical examples where being blind or partially sighted, perhaps uniquely, places you at a striking disadvantage.

5.10 For example, one claimant mentioned that he sometimes drops a glass in the kitchen having failed to see where he needs to place it on a sideboard. The glass has shattered on the floor, but living alone, he feels unable to act, for fear of stepping directly on to the fragments. His guide dog has stepped into the glass without the claimant realising. He also did not realise that his guide dog's paw, cut and bleeding, had led to a blood stain on the living room carpet, a household hygiene and personal safety issue only brought to his attention days later when he received a visitor.

5.11 Many people with little or no sight feel isolated or housebound, meaning they spend more time at home, perhaps out of a sense of narrowing opportunities. We know some people "adapt" to a loss of sight by restricting their activities, staying at home for longer periods of time. This can affect the health and wellbeing of people who are visually impaired. Nearly half of blind and partially sighted people feel “moderately or completely cut off from people and things around them"17.

5.12 Noting the high numbers of blind and partially sighted people who feel cut off from things around them, it is understandable that people with sight loss sometimes place extra emphasis on the importance of maintaining a liveable home environment.

5.13 We want to stress that this Activity is not about enabling disabled people to achieve their "ideal" home environment, which is clearly subjective and would be impossible to measure in an assessment like PIP. We recognise that proposing a new Activity at this stage requires us to demonstrate a clear and reasoned case, underpinned by clear definitions. Below, we set out our proposals for a new Activity - Activity 12 on “maintaining a safe

17 Functionality and the needs of blind and partially sighted adults in the UK, T. Pey, F. Nzegwu and G. Dooley, The Guide Dogs for the Blind Association, November 2006.

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and liveable home environment” (or “keeping safe at home”, for short)18.

5.14 We wish to emphasise that we are willing to work with the DWP to identify the best means of securing this Activity within the final regulations. If the DWP chooses to accommodate some of these tasks in other (existing) Activities we would need to be convinced that the key tasks of cleaning and lighting and heating the home were being addressed.

5.15 Proposal for a new Activity - maintaining a safe and liveable home environment (Activity 12).

Purpose: to recognise additional barriers for disabled people living independently at home; in the context of this submission, specifically to recognise the challenges faced by blind and partially sighted people with cleaning, laundry, lighting and maintaining a safe home environment.

18 Amended slightly since our meeting with Lord Freud (on the issue of aids and adaptations) on 26 March 2012.

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Keeping safe at home19

(a) Can maintain a safe home environment unaided

0

(b) Needs a complex aid or appliance to keep safe at home20

1

(c) Either:(i) Needs assistance to complete complex tasks21 essential for safe housekeeping22; or (ii) Needs prompting to complete complex tasks essential for safe housekeeping.

2

(d) Either:(i) Needs assistance to complete basic tasks essential for safe housekeeping; or(ii) Needs prompting to complete basic tasks essential for safe housekeeping

4

(e) Needs assistance or prompting to keep home regulated at a safe temperature 23

8

19 Can maintain a safe home environment that does not risk adversely affecting your health or condition.20 Complex aid to be defined in collaboration with DWP and other specialist organisations.21 To be discussed with the DWP but provisionally defined to include vacuum, mop the floor and change a lightbulb. Basic tasks to include checking and cleaning spillages, checking and cleaning breakages, turning the central heating on or off.22 To be discussed with DWP but provisionally defined to mean the tasks essential to keep the home hygienic, well lit and clear from obvious dangerous hazards and obstacles. 23 To be defined with DWP and specialist organisations.

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5.16 We envisage that blind or partially sighted people would score at least one point, more likely two points and possibly up to four points under descriptor (d).

5.17 In the following paragraphs, we summarise our recommendations in respect of the DWP’s proposed Activities.

5.18 Preparing food and drink (Activity 1):

We recommend Activity 9 – “making financial decisions” – should encompass the costs that arise from needing additional help or aids to buy food.

If the preparation of food and drink would take a blind or partially sighted person over twice as long as anybody else, they should score as if they could not undertake this activity.

5.19 Managing therapy or monitoring a health condition (Activity 3):

We recommend that the DWP consider the sometimes substantial costs blind and partially sighted people face when they use specialist aids to manage a condition on their own. Only being able to manage or receive medication, therapy or monitor a health condition with the use of an aid or appliance should attract one point.

We recommend the weighting of descriptor (b) – “needs supervision, prompting or assistance to manage medication or monitor a health condition” – is increased from one point to two. This would mean there is a logical progression from “needing an aid or appliance” to “needing supervision, prompting or assistance”.

We recommend that the DWP broadens out the definitions in Activity 3 to include the additional costs of meeting NHS guidelines on activity levels.

The total time taken by this Activity should include the time taken by a carer to get to and from the claimant's home.

5.20 Bathing and grooming (Activity 4):

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We recommend the DWP broadens out the definition to include support with shaving, cutting one’s nails and applying make-up.

We also recommend that needing help with checking grooming, so for instance assistance from someone to check you are shaving or have shaven correctly (both face and legs), should be included within the scope of this Activity. Either this should feature as a descriptor in its own right (and attract two points like needing assistance to groom) or the definition of “needs assistance to groom” should be broad enough to encompass help from someone else to check you are grooming correctly and the task has been performed to a reasonable standard.

5.21 Managing toilet needs or incontinence (Activity 5):

We recommend the Activity should be broadened out to include “safely and reliably locating a toilet in an unfamiliar environment24” so blind and partially sighted people can fulfil this basic function.

We recommend that descriptor (d) under Activity 5 on “managing toilet needs” should encompass “physical intervention by another person to help an individual locate a toilet in an unfamiliar environment”. As with all other tasks this would need to be done safely and reliably.

5.22 Dressing and undressing (Activity 6):

We recommend that either this Activity on “dressing and undressing” or the Activity on “making financial decisions” (Activity 9) should address the difficulties and extra costs involved in choosing clothing to buy.

We recommend that the DWP widen out the definition of this Activity to include “needs assistance or prompting to select appropriate clothes to buy” which could either come within the definition of descriptor (c) as it stands or constitute another descriptor in its own right. This could mean awarding someone one

24 The definition of “locating a toilet” being: “using visual and verbal cues to follow a simple route or orientate yourself so you can reach the nearest available toilet”.

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point where help in selecting clothes to buy is the main limitation established within this Activity.

5.23 Communicating (Activity 7):

Our first recommendation relates to the scoring of descriptor (d) on accessing written information. This should be defined in broad terms, not just accessing information in print form, but accessing information in your preferred format, be it e-mail, Braille, audio or large print. The descriptor needs to reflect the additional costs and difficulties in practice involved with obtaining these formats and the common use of many expensive aids and software that act as a medium for obtaining standard print information. The descriptor on accessing written information must attract eight points. It is wrong to score it differently from needing communication support to express or understand basic verbal information.

We recommend that specialist spectacles that blind and partially sighted people need so they can make use of their residual vision and in some cases still access limited amounts of written information, should be separated out from spectacles commonly available to sighted people. If claimants use specialist spectacles to access information these should be considered an aid or appliance for the purposes of fulfilling descriptor (b).

Deafblind people: we believe that people who use both aids to access written information and communication support to access verbal information should be awarded 10 points and individuals who require both assistance to access written information and communication support to access verbal information should receive 12 points.

Given that they face additional costs and multiple barriers to accessing both written and verbal information deafblind people should have this recognised under the criteria which should assess their use of aids, assistance and communication support. We feel that our proposals are a fairer way of identifying those deafblind people who face the highest costs and greatest barriers.

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5.24 Engaging socially (Activity 8):

We recommend that DWP reconsider who can score points under Activity 8 so that it is not restricted to people with cognitive, mental and intellectual impairments.

5.25 Making financial decisions (Activity 9):

We recommend that the definition of “making financial decisions” should be broadened out to take into account the barriers blind and partially sighted people experience. In other words “making financial decisions” should be revised so that it:

(a) compensates for a lack of support provided with purchasing food and clothes under Activities 1 and 6; or

(b) compensates for poor weighting for assistance with accessing written information (descriptor (d)) under Activity 7; or

(c) independent of any other developments, includes a new descriptor or descriptors on needing assistance to make complex or simple financial decisions; and

(d) taking into account and building on this last point, the activity deals with all barriers to making financial decisions, not just cognitive, mental and intellectual barriers.

We recommend that Activity 9 should include two new descriptors, but neatly set out within the existing sequence of points so that “needs assistance to make complex financial decisions”, like prompting, scores two points. We recommend that “needs assistance to make simple financial decisions”, like prompting, scores four points.

5.26 Planning and following a journey and Moving around (Activities 10 and 11)We recommend that descriptor (c) on following a journey to an unfamiliar destination includes not only “supervision, prompting or a guide dog or other assistance dog25” but assistance and an

25 Please note our observation at para. 1.8 of this response concerning terminology.

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orientation aid too. We also recommend that descriptor (e) covers assistance and orientation aids in the same way.

5.27 Finally, certain other recommendations arise outside the specific activities.

5.28 As set out in paras. 4.135-138, above:

- people should be given at least 6 weeks to submit the PIP application form and written evidence and the regulations should be amended accordingly under Part 2 (5) (2);

- under Part 2 (7) (3), individuals should be given at least 14 days’ written warning of an appointment for a face-to-face consultation;

- Part 2 (7) (4) should be amended to state explicitly that this written warning must have been sent in the claimant’s preferred written format (where this has been indicated on the application form);

- Part 2 (8) should be amended to cover provision of written notice in an individual’s preferred written format (where this has been indicated); the claimant’s ability to answer the telephone; and provision of communication support at the consultation, when determining whether the claimant has good reason for not attending a consultation.

5.29 As set out in para. 4.139 above, we welcome the definition of “repeatedly” as meaning that a task should be completed as often as required during the day. Recognising that for many people with sensory impairments, seasonal changes impact on their ability to get around and communicate, we recommend that individuals should be considered unable to perform an activity where seasonal changes mean they are unable to complete that activity during a season.

5.30 As set out in para. 4.143 above, “reliably” should be defined as the same standard that a non-disabled individual would expect according to the activity - for example a social activity, training activity or job interview.

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5.31 As set out in para. 4.145 above, the definition of “prompting” must be clear that this applies for “some of the time” rather than the majority of the time.

5.32 As set out in para. 4.148 above, it has been long established that support with seeing and hearing is seen as “attention” for the purposes of DLA and so on a par with “physical” care needs. It is essential that this sort of channel to entitlement is preserved.

6. Conclusions

6.1 Given the Government’s declared intention to wipe more than £1 billion off the projected cost of DLA, there were always going to be lots of losers. We now have more detail: the cut-off for PIP standard rate (for both the daily living and mobility components) will be 8 points. The threshold for PIP enhanced rate will be 12 points.

6.2 Originally we felt quite positive about the improvements the DWP had made to the regulations following the highly problematic first draft in May 2011. Now that we have learned where the thresholds will be set and have seen evidence that this will lead to lower combined rates of PIP for case studies like Sarah - who has a severe visual impairment - we are seriously concerned about the proposals.

Acknowledgements:

This submission was edited by Geoff Fimister, with input from Steve Winyard, Andy Barrick, Andrew Kaye and Alban Hawksworth at RNIB; Marsha de Cordova at Action for Blind People; Simon Shaw at Sense; James White at the Guide Dogs for the Blind Association; and Tom Maden at Visionary. The document was read and endorsed by representatives of all the subscribing agencies. The research described at section 3. was undertaken by Neil Bateman. In particular, we are grateful to the blind and partially sighted people who have shared their experiences with us.

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For more information, please contact:

Andrew Kaye

Tel. 020-7391 2136E-mail Andrew.Kaye@rnib.org.uk

or Matt Davies

Tel. 020-7388 1266E-mail Matt.Davies@rnib.org.uk

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Appendix 1: proposed Activities

[These are reproduced from the DWP consultation material. The yellow highlighting indicates our proposed amendments].

Activity 1 "Preparing food and drink"

(a) Can prepare and cook a simple meal unaided. 0 points.

(b) Needs to use an aid or appliance to either prepare or cook a simple meal. 2 points.

(c) Cannot cook a simple meal using a conventional cooker but can do so using a microwave. 2 points.

(d) Needs prompting to either prepare or cook a simple meal. 2 points.

(e) Needs supervision to either prepare or cook a simple meal. 4 points.

(f) Needs assistance to either prepare or cook a simple meal. 4 points.

(g) Cannot prepare and cook food and drink at all. 8 points.

[If the preparation of food and drink would take a blind or partially sighted person over twice as long as anybody else, they should score as if they could not undertake this Activity].

Activity 2 "Taking nutrition"

(a) Can take nutrition unaided. 0 points.

(b) Needs either -(i) to use an aid or appliance to take nutrition; or(ii) assistance to cut up food. 2 points.

(c) Needs a therapeutic source to take nutrition. 2 points.

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(d) Needs prompting to take nutrition. 4 points.

(e) Needs assistance to manage a therapeutic source to take nutrition. 6 points.

(f) Needs another person to convey food and drink to their mouth. 10 points.

Activity 3 "Managing therapy or monitoring a health condition"

(a) Either -(i) Does not receive medication, therapy or need to monitor a health condition; or(ii) Can manage medication, therapy and monitor a health condition unaided. [Delete “or with the use of an aid or appliance”]. 0 points.

[New]26 (b) Can only manage or receive medication, therapy or monitor a health condition with the use of an aid or appliance. 1 point.

(c) Needs supervision, prompting or assistance to manage medication or monitor a health condition. 2 points.

(d) Needs supervision, prompting or assistance to manage therapy that takes up to 3.5 hours a week. 2 points.

(e) Needs supervision, prompting or assistance to manage therapy that takes between 3.5 and 7 hours a week. 4 points.

(f) Needs supervision, prompting or assistance to manage therapy that takes between 7 and 14 hours a week. 6 points.

(g) Needs supervision, prompting or assistance to manage therapy that takes at least 14 hours a week. 8 points.

[We recommend the DWP broadens out the definitions in Activity 3 to include the additional costs of meeting NHS guidelines on activity levels].

26 Other descriptors in this Activity re-numbered accordingly.

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[It should be specified that total time taken by this Activity should include the time taken by a carer to get to and from the claimant's home].

Activity 4 “Bathing and grooming"

(a) Can bathe and groom unaided. 0 points.

(b) Needs to use an aid or appliance to groom. 1 point.

(c) Needs prompting to groom. 1 point.

(d) Needs either -assistance to groom; or check grooming. 2 points.

(e) Needs supervision or prompting to bathe. 2 points.

(f) Needs to use an aid or appliance to bathe. 2 points.

(g) Needs assistance to bathe. 4 points.

(h) Cannot bathe or groom at all. 8 points.

[We recommend the DWP broadens out the definitions in Activity 4 to include the additional costs of essential personal maintenance such as support with cutting nails, shaving, waxing and applying make-up].

Activity 5 "Managing toilet needs or incontinence"

(a) Can manage toilet needs or incontinence unaided. 0 points.

(b) Needs to use an aid or appliance to manage toilet needs or incontinence. 2 points.

(c) Needs prompting to manage toilet needs. 2 points.

(d) Needs assistance to manage toilet needs, including physical help by another person to help an individual locate a toilet in an unfamiliar environment. 4 points.

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(e) Needs assistance to manage incontinence of either bladder or bowel. 6 points.

(f) Needs assistance to manage incontinence of both bladder and bowel. 8 points.

(g) Cannot manage incontinence at all. 8 points.

Activity 6 "Dressing and undressing"

(a) Can dress and undress unaided. 0 points.

[New]27 (b) Needs assistance or prompting to select appropriate clothes to buy. (1 point).

(c) Needs to use an aid or appliance to dress or undress. 2 points.

(d) Needs either -(i) prompting to dress, undress or determine appropriate circumstances for remaining clothed; or(ii) assistance or prompting to select appropriate clothing. 2 points.

(e) Needs assistance to dress or undress lower body. 3 points.

(f) Needs assistance to dress or undress upper body. 4 points.

(g) Cannot dress or undress at all. 8 points.

Activity 7 "Communicating"28

(a) Can communicate unaided and access written information unaided, or using non-specialist spectacles or contact lenses. 0 points.

(b) Needs to use a basic aid or appliance [1] other than non-specialist spectacles or contact lenses to access written information. 2 points.

27 Other descriptors in this Activity re-numbered accordingly. 28 Our proposed amendments to this Activity require re-numbering of descriptors at several points.

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(c) Needs to use an aid or appliance to express or understand verbal communication. 2 points.

(d). Needs either - (i) assistance to access written information – including in an alternative format such as, Braille, audio or large print; or(ii) a complex aid or appliance [2] to access written information.8 points.

(e) Needs communication support to express or understand verbal information. 8 points. [Simplify draft descriptors (e) and (f) to just focus on one descriptor on needing communication support to express verbal information, removing the distinction between basic and complex verbal information].

[New] (f) Needs both communication support to express or understand verbal information and needs to use a basic aid or appliance to express or understand verbal communication. 10 points.

(g) Either – (i) Needs both communication support to express or understand verbal information and needs assistance or a complex aid or appliance to access written information; or(ii) cannot communicate at all. 12 points.

[1] For example a simple manual aid such as a magnifier

[2] For example a complex electronic aid such as computer brailledisplay or CCTV device

Activity 8 "Engaging socially"

(a) Can engage socially unaided. 0 points.

(b) Needs prompting to engage socially. 2 points.

(c) Needs social support to engage socially. 4 points.

(d) Cannot engage socially due to such engagement causing either -(i) overwhelming psychological distress to the individual; or

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(ii) the individual to exhibit uncontrollable episodes of behaviour which would result in a substantial risk of harm to the individual or another person. 8 points.

[We recommend that the DWP reconsider who can score points under Activity 8 so that it is not restricted to people with cognitive, mental and intellectual impairments].

Activity 9 "Making financial decisions"

(a) Can manage complex financial decisions unaided. 0 points.

(b) Either -(i) needs prompting to make complex financial decisions; or(ii) needs assistance to make complex financial decisions. 2 points.

(c) Either - (i) needs prompting to make simple financial decisions; or(ii) needs assistance to make simple financial decisions. 4 points.

(d) Cannot make any financial decisions at all. 6 points.

[We recommend that the DWP reconsider who can score points under Activity 9 so that it is not restricted to people with cognitive, mental and intellectual impairments. It should also be extended to encompass the costs that arise from needing additional help or aids to shop].

Activity 10 "Planning and following a journey"

(a) Can plan and follow a journey unaided. 0 points.

(b) Needs prompting for all journeys to avoid overwhelming psychological distress to the claimant. 4 points.

(c) Needs either –

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(i) assistance, supervision, prompting, a guide dog or other assistance dog29 or orientation aid to make an unfamiliar journey; or (ii) an unfamiliar journey to have been entirely planned by another person. 8 points.

(d) Cannot follow any journey because it would cause overwhelming psychological distress to the claimant. 10 points.

(e) Needs either – (i) assistance, supervision, prompting, a guide dog or other assistance dog or orientation aid to make a familiar journey; or (ii) a familiar journey to have been planned entirely by another person30. 15 points.

Activity 11 "Moving around"

(a) Can move at least 200 metres either – (i) unaided; or (ii) using an aid or appliance, other than a wheelchair or a motorised device. 0 points.

(b) Can move at least 50 metres but not more than 200 metres either – (i) unaided; or (ii) using an aid or appliance, other than a wheelchair or a motorised device. 4 points.

(c) Can move up to 50 metres unaided but no further. 8 points.

(d) Cannot move up to 50 metres without using an aid or appliance, other than a wheelchair or a motorised device. 10 points.

(e) Cannot move up to 50 metres without using a wheelchair propelled by the claimant. 12 points.

29 Please note our observation at para. 1.8 of this response concerning the terminology here.30 In these amended descriptors, we have suggested replacing “journey to a familiar [or unfamiliar] destination” with “familiar [or unfamiliar] journey”.

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(f) Cannot move up to 50 metres without using a wheelchair propelled by another person or a motorised device. 15 points.

(g) Cannot either – (i) move around at all; or (ii) transfer unaided from one seated position to another adjacent seated position. 15 points.

And we propose a new

Activity 12 "maintaining a safe and liveable home environment" [or “Keeping safe at home”]

(a) Can maintain a safe home environment unaided. 0 points.

(b) Needs a complex aid or appliance to keep safe at home. 1 point.

(c) Either – (i) needs assistance to complete complex tasks essential for safe housekeeping; or (ii) needs prompting to complete complex tasks essential for safe housekeeping. 2 points.

(d) Either – (i) needs assistance to complete basic tasks essential for safe housekeeping; or (ii) needs prompting to complete basic tasks essential for safe housekeeping. 4 points.

(e) Needs assistance or prompting to keep home regulated at a safe temperature. 8 points.

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Appendix 2: examples of case studies31

Case study 10 - SarahSarah is 45, lives alone and works as an administrative assistant. She is largely independent at home although she needs assistance with her insulin for her diabetes in order to take it safely; either her sister or father calls in to give her the injections. She is able to read Braille, having learned to do so many years ago when she lost her sight, and her family have put Braille labels on various household items to support her independent living. She likes to cook, although she often buys ready peeled and chopped vegetables for ease and uses a microwave to ensure that she can do so safely. She has a wide circle of friends and a good social life. At home, she uses an adapted telephone, computer keyboard and voice recognition software to give her greater independence with communication. She gets help from family and friends to organise her clothes so that she dresses appropriately. She enjoys going to concerts and will travel to familiar places on her own but needs another person if she is going somewhere unfamiliar, particularly if that involves public transport.

Likely descriptor choices Activity Descriptor Points1 D Needs prompting to either prepare

or cook a simple meal.2

2 A Can take nutrition unaided. 03 B Needs supervision, prompting or

assistance to manage medication or monitor a health condition.

1

4 A Can bathe and groom unaided. 05 A Can manage toilet needs or

incontinence unaided.0

6 C Needs either – i. prompting to dress, undress or determine appropriate circumstances for remaining clothed; or

ii. assistance or prompting to

2

31 From the DWP consultation material.

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select appropriate clothing.7 D Needs assistance to access

written information.4

8 A Can engage socially unaided. 09 A Can manage complex financial

decisions unaided.0

10 C Needs either – i. supervision, prompting or a support dog to follow a journey to an unfamiliar destination; or

ii. a journey to an unfamiliar destination to have been entirely planned by another person.

8

11 A Can move at least 200 metres either –

i. unaided; or ii. using an aid or appliance other than a wheelchair or motorised device.

0

Total points Daily living activities = 9 (standard rate Daily Living component) Mobility activities = 8 (standard rate Mobility component)

Explanation Sarah is able to do most daily living activities independently or with some support. She requires supervision when getting around to ensure her safety on unfamiliar journeys.

Case study 11 - BobBob is 50 and lives with his wife. He is still getting used to the impact of suddenly losing his sight seven months ago. He is gradually getting more confident about moving around within the house, although he still tends to bump into things. He cannot go out alone without supervision as he cannot yet orientate himself and has tripped and fallen a few times. He is learning Braille, but is finding it challenging; in the meantime his wife has started reading the paper to him and helping him with his mail. He used to love cooking but now cutting, chopping and even opening packaging takes him a long time and he cannot handle hot pans safely. His

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wife assists him to select clothes appropriate for the weather and occasion although he has just developed an organisation system for doing this himself. Although he is not currently working, he hopes to return in the future once he is more independent.

Likely descriptor choices Activity Descriptor Points1 G Needs prompting to either prepare

or cook a simple meal.8

2 A Can take nutrition unaided. 03 A Needs supervision, prompting or

assistance to manage medication or monitor a health condition.

0

4 A Can bathe and groom unaided. 05 A Can manage toilet needs or

incontinence unaided.0

6 C Needs either – i. prompting to dress, undress or determine appropriate circumstances for remaining clothed; or

ii. assistance or prompting to select appropriate clothing

2

7 D Needs assistance to access written information.

4

8 A Can engage socially unaided. 09 A Can manage complex financial

decisions unaided.0

10 E Needs either – i. supervision, prompting or a support dog to follow a journey to a familiar destination; or

ii. a journey to a familiar destination to have been entirely planned by another person.

15

11 A Can move at least 200 metres either –

i. unaided; or ii. using an aid or appliance other than a wheelchair or motorised device.

0

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Total points Daily living activities = 14 (enhanced rate Daily Living component) Mobility activities = 15 (enhanced rate Mobility component)

Explanation Bob is severely affected by his recent impairment. He requires assistance in some areas of daily living, particularly in relation to accessing written information, basic food preparation, and cannot get around safely on his own outside of the house.

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Appendix 3: the full list of extra costs identified

The extra costs involved with living with sight loss do not reduce because you have got more used to being visually impaired or have adapted to it. The items and equipment below need replacing periodically and using, for example, taxis or central heating more often because of your sight loss will not change over time.

Utility bills:Higher electricity bills because of having lights on more often due to being partially sighted.

Higher electricity bills because of having to do more laundry as prone to spilling things on clothes.

Higher heating bills because at home more often due to being out of work (75% unemployment rate) and face major barriers to independent mobility

Equipment to enable a visually impaired person to live more independently:Labelling systems for food so, for example, you don't mistake cat food for baked beans.

Audible liquid level indicator to prevent a visually impaired person from overfilling a mug with boiling hot water.

Bath temperature and level alert to prevent a visually impaired person from burning themselves or overfilling the bath causing flooding.

Big button phones for partially sighted people.

Adapted mobile phones.

Extra lamps and lighting within cupboards.

Lighted nail clipper with magnifier.

Tweezers and magnifier with light.

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Talking ear and forehead thermometers.

Talking kitchen scale.

Talking measuring jug.

One touch automatic can opener.

Tactile tape measure.

Snow and ice shoe grips because unable to see dangerous patches of ice during the winter months.

Sat Nav equipment to enable visually impaired people to navigate unfamiliar locations.

Note detectors to be able to differentiate, for example, between a £5 and a £20 note.

Computer equipment, such as text-to-speech software.

CCTV or scanners allowing you to read information, like bills or a newspaper, independently.

Food:Purchase of (potentially more expensive) prepared meals or ingredients because it is more difficult to make meals from scratch as unable to see to cut vegetables etc.

Unable to take advantage of the “2-4-1” deals in supermarkets because cannot see them on shop shelves.

Specialist food due to health conditions relating to sight loss, which can be more expensive.

May shop at a local convenience store (where prices are often higher) because it easier to get to than the supermarket (which may require a taxi).

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Travel:More taxi rides because unable to walk to unknown destinations or to use public transport such as buses as cannot see the number on the bus or know when to get off.

Medical:More general medical supplies due to trips and falls both in the home and outside - more chances of walking into things or scratching yourself on tree branches, for example, because cannot see obstacles.

A dosette box to manage tablets.

Talking blood sugar testing kit for diabetes.

Clothing:Damage clothing more often than sighted people due to trips and falls or from ripping clothes on tree branches, for example.

Assistance:There are many activities around the home that are difficult or impossible if you have little or no sight. Getting these done may well involve paying someone.

Cleaning the house and in particular keeping the kitchen and bathroom clean and hygienic.

Ironing clothes.

Reading mail.

Decorating the house.

Minor repairs to the home.

Gardening.

Access to discounts:Some people miss out on various internet offers and deals.

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They may have to make do with standard price gadgets, holidays, clothes etc.

One example given to us was insurance. Making changes to a policy, e.g. change of address, is normally free if done online. Visually impaired people may find this difficult to do and insurers often charge an administration fee of up to £30 if you telephone them about policy change details.

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Appendix 4: a brief description of each of the organisations contributing to this submission

Action for Blind People is a national charity with local reach,providing practical help and support to blind and partially sightedpeople of all ages. We listen, we understand, we act. Action speaks louder for nearly 30,000 visually impaired people everyyear, always placing their needs at the heart of everything we do. We support these individuals in many aspects of their lives and help them to find the right services and products they need to live independently. Action works with other expert organisations to draw on a wide range of skills and resources. Our close relationship with RNIB enables us to provide a unique combination of complementary strengths and expertise to help an ever increasing number of people with sight loss.

Blind Veterans UK - formerly St Dunstan's - believes that no one who has served our country should battle blindness alone.That's why we're there to help with a lifetime's practical and emotional support, regardless of when people served or how they lost their sight. We get our members back on their feet, recovering their independence and discovering a life beyond sight loss.

Deafblind UK is a membership based national charity offering specialist services and human support to people with combined sight and hearing loss. It is chaired by a Deafblind person, with a predominantly Deafblind Board of Trustees. Our services aim to support Deafblind people to live independent lives with autonomy and control. We work towards our vision, by championingthe rights and interests of all people who are Deafblind or have a combined sight and hearing loss to ensure they have equal rights, access and opportunities to all other citizens within society.

The Guide Dogs for the Blind Association provides a range of adult mobility services and habilitation services to children and young people throughout the UK. Services are delivered through 20 Mobility Teams, often working in collaboration with other local voluntary and statutory agencies to identify individuals whose mobility would be enhanced by the provision of a guide dog or alternative mobility services. In addition, Guide Dogs conducts research, produces good practice guidance and campaigns to

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increase the independence, well-being and dignity of blind and partially sighted people.

The Macular Disease Society To promote independence, confidence and quality of life for people with macular disease. The Macular Disease Society is a specialist charity for people affected by any form of the condition. We have around 15,000 members and support many more through our Helpline, Counselling, Advocacy and low vision services, and through our network of more than 240 local groups. We have a network of over 1,000 dedicated volunteers across the UK. We are dedicated to providing high quality, impartial, information and practical support so that those with the condition may make the most of their remaining vision. We campaign for improved care and work with other charities and eye care professionals to achieve this.In addition to our prime purpose of providing support for members, the Society actively promotes and funds research into macular disease.

The National Blind Children’s Society supports children and young people who are visually impaired, their parents and carers, and professionals. We offer support, information and advice from the time of diagnosis until the age of 25. Our five key services are designed to improve lives and create opportunities: Family Support, Early Intervention and Information, Educational Advocacy, ICT and Sensory Equipment, Recreational Activities and CustomEyes Books.

The National Federation of the Blind of the United Kingdom is an independent, non-political, self-help campaigning group and registered charity. As the voice of blind people, the Federation, through representation and campaigning, strives to improve aspects and quality of daily life for all blind, partially sighted and deafblind people, and those whose sight disability is part of multi-disability, in the United Kingdom.

The Royal National Institute of Blind People has over 10,000 members, who are blind, partially sighted or the friends and family of people with sight loss. 80 per cent of our Trustees are blind or partially sighted. We encourage members to be involved in our work and regularly consult with them on Government policy and their ideas for change.

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SeeAbility is a national charity specialising in working with people with sight loss and multiple disabilities. We provide rehabilitative daily living support in our own and third party accommodation and we also advise people with learning disabilities, their carers and professionals working with them about all aspects of eye health.

Sense is a national charity that supports and campaigns for children and adults who are deafblind. We provide tailored support, advice and information as well as specialist services to all deafblind people, their families, carers and the professionals who work with them. In addition, we support people who have a single sensory impairment with additional needs.

Visionary works to support local sight loss charities in enabling blind and partially sighted people to achieve their full potential as independent citizens and to influence and work in partnership with others to improve the quality of life of visually impaired people. Sight loss can happen to anyone at any time and can be devastating, leading to feelings of isolation and loss of independence. However, with the right help and support, people can and do adapt to living with sight loss. Visionary believes that local organisations are best placed to offer support – providing, as they do, information, advice and practical help around living with sight loss.

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