On Thursday the government released its response to the consultation on Personal Independence Payments (PIP), the successor to Disability Living Allowance (DLA) that is to be brought in from April 2013. Amongst the surprises were the government’s limitation of higher rate (‘enhanced’) mobility to people who cannot move more than 20m – a shock to the disabled community, who had loudly expressed their concern that a cut-off of 50m was too small, let alone 20.
There were some improvements. The government has extended its definition of aids and appliances to include more every-day objects that are used by necessity rather than choice, e.g. electric tin openers – but not sat-navs, ostensibly because many people use sat-navs by choice although this seems to be contradictory reasoning on the part of the government. They have also added a descriptor about the need for supervision during eating to prevent choking, and have separated communicating into verbal and written communication. They have clarified some issues around mobility.
Summary of my concerns:
If a movement that occurs in multiple activities is only assessed in one activity, its importance in the person’s life is overlooked and hence the barriers and associated costs are not adequately considered.
The ability to carry out an activity should not be inferred from the ability to carry out a different activity; there are many different reasons for being unable to carry out an activity, and these may be different from the reasons why another activity cannot be carried out.
By ignoring costs, the government cannot ensure that the benefit goes to everyone who needs it or that the amount given is similar to the amount needed.
Bending and Bathing
The government has extended bathing to include the whole body, rather than just the torso. Their reasoning for not originally considering the lower half of the body was that issues around bending were considered elsewhere. This is a repeated theme in the government’s response to the consultation – that an issue can only be considered once, no matter how many things it affects.
For this reason, the ability to wash the lower half of the body was initially excluded. Similarly, being able to reach things below waist height is excluded from consideration of the ability to prepare a meal. It seems that the government considers all issues relating to bending to be adequately addressed in consideration of the ability to dress the lower half of the body.
I would dispute this. I would dispute that the movements associated with dressing the lower half of the body are sufficiently similar to any other bending-related movement to make it unnecessary to assess these other movements. I would suggest that the cost of needing assistance with dressing is different from the cost of needing assistance with cooking.
I would suggest that a person may be able to dress the lower half of their body, but find other movements such as bathing the lower half of the body and accessing a floor-level oven too difficult. I suggest this on the basis of my own experience. I struggle to use a floor-level oven because the action of bending over from a standing position to get something out of an oven is more difficult than the action of bending over from a seated position to draw on a sock. I also struggle to wash the lower half of my body because the action of bending over from a seated position to wash my feet is an action that involves more time, more movement from my arms and more thoroughness than the action of drawing on a sock which can, let’s be honest, be put on haphazardly without any negative effect on personal care and hygiene – unlike washing feet, which to stop such things as athlete’s foot and smelly socks needs to be done well.
Further dissension may arise from the differentiation between being able to dress the upper body and being able to dress the lower. On the grounds that less bending and reaching is involved in dressing the upper body, requirement for assistance in doing this receives fewer points than the requirement for assistance in dressing the lower body. Yet as an ME sufferer I can confidently say that I find it much easier to draw clothes onto my lower body (which I usually do from a seated position) that to get clothes over my arms and head. Dressing my upper body leaves me with aching muscles, a racing heart, breathlessness and fatigue. I do not experience these issues to anything like the same extent when dressing my lower body.
In other areas, the need for someone to check grooming was excluded on the grounds that the ability to access visual information was assessed elsewhere. I assume that by ‘elsewhere’ the government means the ‘Reading and understanding signs, symbols and words’ descriptor. However, the ability to check one’s appearance is distinct from the ability to understand signs, symbols and words. Whilst some may dispute whether visual appearance is sufficiently important and necessary of consideration in an assessment of a person’s needs, I would still suggest that the ability to understand written information is distinct from the ability to understand what one sees. The government’s conflation of reading with accessing visual information suggests they are primarily thinking of the ability to see in terms of the function (or not) of the eyes. However, the ability to see also depends on the brain interpreting the sensory information from the eyes. Disorders of the brain can leave people able to see but unable to interpret words, or unable to interpret what they see generally, or unable to interpret other specific types of visual object. This may include the ability to check the suitability of one’s appearance, whilst leaving at least some ability to interpret signs, symbols and words.
In the government’s own words, “We have not sought to assess each and every activity an individual might perform on a daily basis but rather we have selected a range of activities which cumulatively act as a good proxy. For example, individuals who have difficulties dressing and undressing are likely to have difficulties in other areas that involve bending and reaching, while individuals who have difficulty preparing food are likely to have difficulties carrying out other activities that require manual dexterity. Individuals who have difficulties making budgeting decisions are likely to face similar difficulties with decision making throughout the course of their lives. We believe it is therefore unnecessary to assess every aspect of daily living.”
The government mistakenly conflates movement with activity. The government’s suggestion is that the ability to carry out one activity is a reliable indicator of the ability to carry out another activity, based on the similarity of movements involved. However the government neglects to recognise that each activity has its one unique set of movements. An ability or not to dress the lower half of the body or use a floor-level oven may not in either case be related to the ability to bend; or bending may be adequate for dressing but inadequate for using a floor-level oven; or vice versa, depending on exactly what the issue is. The ability to dress the lower half of the body is not necessarily a valid indicator of the ability to use a floor-level oven; in the absence of robust data on the correlation between the two activities it is inappropriate to use one as a proxy for the other. A person may need assistance with dressing, or assistance with using an oven, or assistance with both; unless these two issues are considered separately these differences in ability will not be distinguished.
The government fails to consider the cumulative impact of being unable to make a particular movement. Being unable to bend does make dressing difficult, and may mean you need assistance with dressing. Being unable to bend may also make bathing difficult, and cooking difficult, and housework difficult, and shopping difficult. If these are all difficult, such that assistance is required, then that assistance has to be paid for. It will be a time cost to you and your carer, and a financial cost to either you or your carer or both, depending on how much and if you pay the carer.
This means one small movement is not one small cost. The cost depends on how important that movement is over the course of time. A movement that is frequently repeated during the day in a range of tasks is one that will create more costs and more need for assistance, but by focussing on movement rather than activity the government cannot assess the importance of that movement or what barriers, needs and costs it creates if a person cannot perform that movement.
I would like to suggest that what is important (in terms of an assessment of need) is not whether you can or cannot bend. What is important is whether you need someone to help you bathe, dress and/or prepare a meal. Similarly with sight, what is important is not your ability to see. What is important is your ability to read, your ability to interpret signs and symbols, your ability to access information, and your ability to make sense of what visual information your brain receives.
It does not matter why you cannot perform an activity. If I cannot dress, it does not matter whether that is due to difficulties in bending, pain, fatigue or something else. What matters is that I cannot dress. If I cannot read, it does not matter whether that is because I am blind or because of visual aphasia/alexia. What matters is that I cannot read. If I cannot cook, it does not matter whether this is because of lack of manual dexterity, pain, fatigue or difficulty with bending. What matters is that I cannot cook.
My needs are not related to the reason why I cannot do something. They are related to the fact that I cannot do them. My ability to use a floor-level oven is, or may be, independent of my ability to dress. It is therefore a separate need that should be considered separately.
There is little reference to fatigue. Whilst things have to be done in a timely manner, this is not defined. Without such definitions it is surely impossible to be objective as to whether someone can or cannot do an activity. I can, for example, bathe and dress myself unaided. But it is a significant proportion of my energy, and limits my ability to do other activities. Yet this isn’t well considered. Even 1 point for fatigue from an activity that affects other activities would help to address this issue, as the points would then accumulate across activities.
The government considers that the activities are a good proxy for overall level of need. For this reason, the actual cost is ignored. Areas ignored include:
special diets (pg 21, paragraph 5.10)
prescriptions (pg 26, para. 5.41)
some grooming (such as shaving and cutting nails, pg 28, para. 5.49)
coping with menstruation (pg 30, para. 5.59)
laundry costs (pg 30, para. 5.63)
housework (pg 40, para. 5.114)
There is no evidence to suggest that the proxies give a good indicator of cost. They may, as the government asserts, be a suitable method for grading people’s needs. But that does not mean that they accurately assess a person’s costs, or that the award and the amount of benefit given are sufficient to cover these costs. The government, as far as I am aware, has not released any evidence of research into the average costs incurred by a person at any given point on a scale of ‘neediness.’
In 2003, the OECD concluded that DLA was inadequate in scope and generosity to cover the costs of disabled and chronically ill people. The Joseph Rowntree Foundation in 2004 showed that disability benefits routinely fall short of need by £200 a week – excluding personal assistance costs. The proposals for PIP start with a 20% reduction in DLA, yet DLA was already inadequate in both the amount given and the number of people given it.
An Assessment that Works
I would like to suggest that any new benefit with the aim of assisting disabled people with the extra costs they incur should start from an assessment of what these costs are and where they occur.
It is not a difficult thing to do. Indeed, the Joseph Rowntree Foundation has already done it. They have broken it down for high-medium, low-medium, intermittent or fluctuating, hearing impairment and visual impairment needs.
The focus should also not be on what movements can be carried out, but what activities a person can perform. Can the person access public transport? Can the person get out and about on their own feet? Can the person routinely self-propel their own wheelchair? Can the person wash and dress themselves? Can the person prepare their own meal? Can the person do their own shopping? Can the person do their own housework?
These are where the costs and needs occur. It is not about whether the person can bend or not, because this has varying impact on what a person can or cannot do. It is about what assistance the person needs to achieve an adequate living standard and to not face discrimination, whether intentional or not, in accessing the societal provisions that an able-bodied person can access.
Until the government creates an assessment based on needs and costs, it will not be able to create an assessment that works.
 OECD 2003, Transforming Disability into Ability
 JRF 2004, The Costs of Disability