The proposed Personal Independence Payment:
the draft regulations - key issues for blind and partially sighted people
June 2011
1. Introduction
1.1 This submission follows from the joint response of 11 organisations[1] from the visual impairment (VI) sector to the Government’s consultation on the future of Disability Living Allowance (DLA).
1.2 This response to the draft Personal Independence Payment (PIP) regulations (and associated documentation) has been compiled on behalf of:
- Action for Blind People
- Deafblind UK
- The Guide Dogs for the Blind Association
- The National Blind Children's Society
- The National Federation of the Blind of the United Kingdom
- The Royal National Institute of Blind People (RNIB)
- SeeAbility
- Sense
- Visionary
1.3 A brief description of each organisation is given at Appendix 1 to this submission.
1.4 Our original joint VI sector submission was informed by direct evidence from blind and partially sighted people. We have again included this (at Appendix 2) as it supports powerfully the points we make below.
1.5 We have sought to provide comments under the headings used by the Department for Work and Pensions (DWP) in the material provided, but must begin with some important overarching or additional points.
2. Overarching or additional issues
2.1 We do not support a “tick box and points” assessment methodology, preferring a more holistic approach to assessing the additional costs and barriers to participation experienced by disabled people. However, we are aware that the former is likely to prevail, on the basis of current proposals.
2.2 It is therefore a cause for concern that this current consultation takes place without our knowing what the points are for the descriptors. We therefore lack essential information needed to assess the probable impact on blind and partially sighted people.
2.3 Nevertheless, we have good reason to be concerned that large numbers would fail to qualify for PIP as a consequence of the limited insight into the effects of visual impairment suggested by the current proposals. There is a large gap between what is envisaged and the rhetoric of a benefit to facilitate “'full, active and independent lives”. It is hard to escape the conclusion that this contradiction is the product of a tension between the goal of independent living and the 20% savings objective driving the transition from DLA to PIP.
2.4 Despite Ministerial assurances that "DLA is not in doubt for people with a visual impairment", we can see little evidence of this. We recognise that the proposed assessment attempts to reflect a broad range of impairments, but we cannot see that it takes a "better account" of sensory impairments - in fact we are struggling to see where these are taken into account at all in the majority of descriptors.
2.5 We are also unhappy that, despite the promise that the descriptors would cover participation, those chosen seem to focus on basic medical issues and certainly do not effectively cover "involvement in life situations" in the breadth that we would have expected for a benefit relating to personal independence.
2.6 We recommend that the assessment, once in place, is subject to rigorous analysis, such as a Rasch analysis, to ensure that any problematic overlap or disproportionate weighting is avoided - thereby establishing whether the criteria, points and weighting disproportionately affect particular impairment groups. From our perspective, it would be essential to be sure that those who face barriers around mobility and communication are not unduly disadvantaged when compared with those whose needs primarily relate to a narrow definition of personal care. We also recommend the results from the testing phase of the new assessment are made public so the results of the assessments are known to the clients who participate and to other stakeholders with an interest.
2.7 We are extremely concerned that those who would be ineligible for PIP under these proposals would also be ineligible for social care, given that such support is focused on those with higher needs and is increasingly restricted. The level of unmet need caused by this double ineligibility would have a very real impact on individuals’ physical and mental wellbeing and lead to an escalation of needs in the medium to long term which would result in significant cost to the public purse as well as adversely affecting those concerned.
2.8 There is nothing in the daily living descriptors about maintaining the person's immediate physical environment – the ability to carry out tasks such as cleaning and home (including garden) maintenance.
2.9 Communication is much more complex than suggested. The proposals have also confused capacity and decision making with communication. There is a need to recognise a complex pattern of different activities – we address this in some detail at 3.9 below.
2.10 There is also a need to include social interaction and participation in a meaningful way.
2.11 One surprising recent development was a statement by DWP officials (at a meeting on 26 May) that, although they recognised that communication had a central role in participation, they currently did not envisage the descriptors applying as a consequence of sight loss alone. This represents a remarkable lack of recognition of the central role of vision in communication and a deficiency in the current planning process that must be addressed.
2.12 Although the DWP preamble mentions the issue of safety several times this element does not permeate through to the descriptors. In fact the whole area of "supervision" (including risk to self and others) within current DLA, which relates to a wide range of disabilities, is not overtly included at all. It is not adequately covered within the two types of proposed support - assistance and prompting. This is very important for blind and partially sighted and deafblind people who are not aware of hazards or dangers.
2.13 We are concerned about the definition of “intermittent” as meaning “at least half the duration of the activity” and how this will be interpreted in relation to the support that some people with sensory impairments need. While some require support with activities for half the time or more, others would need support at equally crucial but less frequent intervals. For example, someone may be able to follow a journey relatively independently, but require assistance with pedestrian crossings, hazards or unpredictable incidents. A transfer between mainline rail stations which in itself may only take up less than five per cent of the total journey presents unique challenges of its own, which can mean the whole journey breaks down without the appropriate support. So any amount of necessary assistance should be considered “continual”.
2.14 We note that in assessing ability the draft states "where an individual is incapable of undertaking an activity due to a severe disorder of mood, behaviour or cognition this will be regarded in the same way as physical difficulties…" We have no problem with this but would urge that this same principle be adopted comprehensively the other way around. So for example, many people with sight loss would have problems buying food and drink and will need help to choose appropriately, but this activity arbitrarily only considers mental, intellectual and cognitive ability.
2.15 Security – both in the home and out and about – is not recognised as an issue.
2.16 The impact of a person’s impairment on their utility costs is also not addressed - including increased use of heating, electricity, gas, water and the telephone and internet.
2.17 It is also important to recognise those costs incurred due to increased wear and tear, for example to bed linen and clothing if above average washing is required.
2.18 Account should also be taken of the adaptations a person may need to their living environment, include adjustments to their house, specialist aids and adaptations, specialist clothing and adapted information and communications equipment.
2.19 We cautiously welcome a commitment to award points to individuals who can complete activities only with the assistance of an aid or appliance. We hope that this is in recognition not only of the additional costs resulting from purchase, maintenance and replacement, but also of the fact that aids and adaptations are only part of the support that people with sensory impairments need to be able to participate in society.
2.20 We also welcome that the assessment will only take into account aids or appliances that are normally used by an individual, rather than any that might potentially help them.
2.21 We welcome the statement that a guide dog will not be considered an “aid”. However, we would like clarification that this includes other kinds of assistance dogs such as hearing dogs. Moreover, the statement is qualified by the observation that a guide dog “may, however, help an individual to follow a journey safely and reliably”. This is problematic: even guide dog users and trainers disagree as to the extent to which a guide dog is able to help an individual to follow a journey safely and reliably. If this statement is to remain, then in order not to influence the assessor inappropriately, it should read “may or may not”.
2.22 The assessment process must include adequate scope for a meaningful element of self-assessment. Claimants must also be free to be accompanied by advisers and advocates.
2.23 We have made clear our preference, in previous submissions, for automatic awards in certain circumstances. In any case, re-assessment should be paper-based if the claimant is receiving the higher rate(s) of the component(s) in question. The likelihood of change is the key issue.
2.24 The relationship between descriptors and guidance is important. Guidance is useful, but may not be thoroughly absorbed by those who need to read it, especially where there is pressure on staff resources. Important points - including all of those covered below - must be in the descriptors.
2.25 As important new developments continue to unfold in the current planning process (see 2.11 above) we would like the opportunity to submit further ideas and evidence, although this may be beyond the currently indicated timescale (6 June) as we will need to consult.
3. Specific areas
Daily living component
3.1 Planning and buying food and drink
This does not reflect the barriers involved in going to a shop and not being able to identify and select objects, check prices or look at special offers. Online purchasing will also have costs where specialised equipment is needed.
The descriptors focus only on the basics of physical existence and do not provide for activities such as buying clothes or essential household equipment, let alone getting out of the house for leisure activities, religious observance, volunteering and so on.
3.2 Preparing food and drink
Most blind and deafblind people would score here, but only at low levels. The descriptors are too narrow and would largely exclude people who are partially sighted. There are obvious issues around reading cooking instructions and labels and avoiding burns. This is a key area for blind and partially sighted people and needs to be given proper recognition.
For people without a cognitive disability there is no logical progression in severity of barriers. The lowest descriptor applies (using aids) but then goes into prompting.
3.3 Taking nutrition
“Can take nutrition only with intermittent assistance or prompting” must include those who require assistance to cut up and identify food. This will generally occur at the beginning of a meal or course, so it is important that the definition of “intermittent” covers this level of support.
3.4 Managing medication and monitoring health conditions
People with sensory impairments require assistance to manage medication. We are concerned that this is not covered. This assistance could include collecting and labelling prescriptions and ensuring the right medication is being taken in the right dose at the right times.
People with visual impairments require support in monitoring health conditions, for example judging if a wound is healing, monitoring blood sugar levels and checking for blood in stools or urine. This may be support at home from another person or more frequent trips to healthcare professionals.
3.5 Managing prescribed therapies other than medication
It is unclear what level of prescription this entails. It should be anything recommended by a medical professional. A narrow definition should be avoided.
3.6 Washing, bathing and grooming
The criteria do not reflect any of the difficulties that blind and partially sighted people have.
Blind and partially sighted people certainly worry about grooming and appearance – it can be crucial to self-esteem and capacity to participate in society. A descriptor of “above a level of self neglect” represents far too low a level for people to be accepted in work or socially.
Care of fingernails and toenails must be included. There are specific difficulties related to visual impairment here that this descriptor must take into account.
3.7 Managing toilet needs or incontinence
Blind and partially sighted people often do not go out because they are anxious that they do not know where facilities are, or if someone can assist them to locate them. This is not reflected in the proposed criteria. Adaptation too often comes about through restricting what is done, not by achieving the same level of independence as non-disabled people.
Deafblind people will also need “continual assistance” from someone to ensure that they can locate public toilets, queue, identify when a toilet is vacant, orientate themselves in the cubicle and identify the toilet bowl, toilet paper, sink, soap and towel and so on. These are distinct requirements that should be recognised by this descriptor.