Response to Personal Independence Payment Draft Assessment Criteria

The PIP draft assessment criteria were published a couple of weeks ago, and The Broken of Britain has been putting together a response, informed by your comments. Here is a rough draft of the response. Your input would be highly valued - if you have ideas or alterations to be made, please e-mail rhydian@thebrokenofbritain.org

The response is pasted below:

This is a submission by The Broken of Britain, an user-led disability rights campaign. This critique of the draft assessment criteria for the Personal Independence Payment have been informed by the opinions of our members.

As a disabled persons’ organization, The Broken of Britain must begin by making some general observation on the subject of the Personal Independence Payment, despite the fact that we recognise that many of these points will be outside the remit of the Personal Independence Payment Objective Assessment Development Group.

The first point to make is that many disabled people were angered by the fact that the decision to reform Disability Living Allowance was taken without consultation, and further angered that the Welfare Reform Bill was published before the consultation on DLA Reform, intended to inform secondary legislation, was closed. As such, there is a great deal of suspicion surrounding the Personal Independence Payment and its intentions. In developing the Regulations for assessment, you will need to provide reassurance to current DLA claimants that the tests are of unimpeachable fairness and is sympathetic to personal circumstances.

There are several problems with and weaknesses in the draft assessment criteria. Many who contributed to this submission expressed concern that, in general, the assessment criteria were setting the bar too high. Many note that the new system is designed to help only those who were incapable rather than those who could ‘get by’ with support, abandoning the concept of an enabling welfare state and disabling many who are currently enabled by claiming DLA.

Problems with the model

The broad principles behind the development of these assessment criteria are flawed. This is particularly so for the principle of ‘more defined and objective criteria’ but also wishing to design criteria which are easy to understand and consistent in their outcome. There is a fundamental conflict here between rigour and objectivity on the one hand, and consistency of outcome on the other. This conflict arises because consistent decisions will be based upon the proxies that have been defined. However, it is possible for two individuals who satisfy the same proxies to be impacted on by their impairment or health condition in different ways, such that their level of disability is not equivalent. Further, the proxies will have been defined in a subjective manner, thus influencing the outcome. As such, making decisions consistent in their outcome is not helpful, as an objective and rigourous assessment would require consideration of all aspects of an individual’s disability.

In terms of the assessment being more holistic, there are so many types of impairment, and combinations of impairment, each having its own disabling impact, that it will not be possible to design proxies that reflect the full range of impairments. A less medical approach is important, as the social model of disability demands. However, it is important that medical evidence is still considered by the assessors, as the nature of the disability is most often linked to the nature of the medical impairment. Making the assessment ‘more active and enabling’ is also important, but the assessment must not ignore that disability is caused by barriers, whether social or medical, that interfere with the person’s ability to complete certain tasks. Getting a full picture of the disability may mean asking what the claimant cannot do, and this should be at the claimant’s discretion.

A methodology using descriptors to assign points on daily living or mobility activities, as set out in Part 2 of the regulations, is unnecessarily prescriptive, and is a blunt and undiscerning instrument of assessment. It is important that:

• the assessment criteria are elastic so that the assessor is able to look at the claimant’s disability holistically rather than deciding on eligibility from a narrow set of rigid descriptors which may not be useful in certain cases.
• the assessment should not focus exclusively on a person’s ability to complete certain tasks, but rather should ask how carrying out this task, if at all possible, would impact upon the claimant’s general health and well-being. Ability to carry out a task as prescribed by the assessment criteria should be judged only by considering how the claimant would cope with carrying this task out repeatedly.
• it is ensured that all claimants understand the assessment criteria and the requirements placed on them prior to the assessment.
• the use of proxies to determine the impact of illness or impairment upon the claimant is not applied rigidly and allows the assessor to consider broader information, especially in cases where the claimant’s disability is not apparent when the proxies are used.
• evidence from General Practitioners, consultants and other specialists, surgeons, registered nurses, psychiatrists, psychologists, therapists, occupational therapists, physiotherapists, and social workers, will be considered.
• the face-to-face assessment is not more heavily weighted than specialist medical evidence during the decision making procedure.
• the claimant has the right, if they choose, to submit two pieces of personal evidence – a personal testimony discussing the impact of their disability, and evidence from a friend or family member discussing the impact of the claimant’s disability from a third person perspective.
• there are multiple possible formats for the claimant’s personal testimony. In the case of a variable condition, the testimony may take the form of a diary of the claimant’s condition.

Further, Personal Independence Payment, like Disability Living Allowance, will provide a cash contribution towards the additional costs faced by disabled people as a result of needs arising from a health condition or impairment. The nature of these costs are not specified and, if proxies are to be applied at all, they should be represented by a comprehensive list of daily living and mobility activities. The activities to be assessed for the daily living is a small list of tasks that are essential to personal health and well-being whereas independent living might include making a cup of tea, washing clothes, completing weekly shopping, fetching a book from a shelf, and the maintenance of a social life.

The extra costs of mobility are proxied by only two activities, which is simplistic and not reflective of the difficulties of mobilizing when disabled. Moving around is not one simple task – a journey over 50 metres is different when traveling downhill or traversing a gradient, negotiating a physical obstacle or moving in a crowd. There are also other barriers to the planning and following through of a journey than the ones mentioned, such as communication barriers from difficulties asking directions to not hearing/seeing/understanding notifications and warnings.

Problems with the set of descriptors

• The descriptors for daily living activities focus, for the most part, on the ability to complete tasks related to personal care from eating to washing. The stated aim of PIP is to support independent living including accessible information, peer support, accessible housing, access to aids and equipment, access to personal assistance, accessible transport, accessible housing, and access to education and employment. The assessment criteria should be widened to accommodate these facets of independent living, thereby acknowledging the complex nature of disabling barriers.
• The descriptors for mobility activities are too few and overly simplistic, especially on the topic of assisted aids. The use of an assisted aid does not mean that the disabled person’s mobility is equal to that of an able-bodied person. The aid functions to compensate for physical impairment, not as a substitute.
• The descriptors for ‘Planning and following through a journey’ ignores the barriers to mobilising faced by disabled people. The difficulty faced by learning disabled people in planning and in coping with a journey is not addressed. Communication barriers to mobility and mobilizing are ignored. The physical barriers to planning and following though a journey – the need fore care assistance, the need for redundancy and emergency planning, the extra costs of travel as a disabled person – are not considered.
• Moreover, many conditions may allow a disabled person to move 50 metres, aided or unaided, a few times a day or requiring rest periods in-between exertion – but not enough to be of any practical utility to the person concerned. The descriptors for ‘Moving around’ fails to account for such situations.
• The descriptors for daily living and mobility activities fail to put communication needs on an equal footing with the barriers that disabled people face in relation to their physical or mental condition. Assessment ensure that the communication needs of claimants are taken into consideration as part of both the daily living and mobility components of PIP at both the standard and enhanced rates.
• The descriptors for both component fail to account for the interlinking of descriptors – between washing and grooming on the one hand, and dressing on the other; between buying food and cooking it; between planning a journey and mobilizing.
• The descriptors also fail to account for the complexity of possible answers in the sense that certain activities are only possible given certain conditions.
• Overall, the set of descriptors fails to proxy a claimant’s involvement in life situations, or give a narrow and limited definition of a disabled person’s involvement in life.

Additional to these problems is that medication is not noted when discussing how the criteria are to be used. A drug or mechanical medical intervention might be defined as aids to the performance of a bodily function. No consideration is given to the issue of extra costs, and the strong possibility of the disabling side-effects of many drugs is ignored.

Further, the assessment of variable and fluctuating conditions is to consider the claimant’s likely condition for the larger part of a one year period. This is hopelessly simplistic and claimants should be assessed with consideration of periods of severe illness in order to determine the full costs that they are likely to face.