A Technical Note to Support the Initial Draft of the Assessment Regulations

Personal Independence Payment Joint Response 31st August 2011

Inclusion Scotland

Personal Independence Payment: initial draft of assessment criteria

A technical note to support the initial draft of the assessment regulations Department of Work and Pensions Informal consultation

May 2011

31 August 2011

of 11 Joint Response 31st August 2011

Introduction This document draws together comments based on two consultation meetings held with representatives of the DWP in Edinburgh in July 2011. The consultation included representative organisations as well as individual disabled people. Consortia represented in this response include:  Sense Scotland – supporting people who are marginalised due to complex support needs including sensory impairments, deafblindness, learning disabilities and physical disabilities.  Inclusion Scotland - Working towards a society where disabled people are equal citizens.  Lothian Centre for Inclusive Living - A user-controlled organisation which supports disabled people to live independently.  MBHA - Blackwood is a leading provider of high quality, flexible support to people who have a wide range of care needs.  Scottish Personal Assistant Employers Network – SPAEN strives to be the voice of personal assistant employers in Scotland

A number of individual disabled people and their families contributed to this document and queried whether any disabled people were included in any reference, steering or advisory groups.

GENERAL COMMENTS We have serious concerns about the substantive basis of the proposed process. If implemented in its current form, it will mark a hugely regressive step in the UK’s treatment of disabled people. The concept of support to achieve a more level playing field will have been swept away. The team we met, and the paper on PIP assessment criteria indicate, that the basis is to provide strictly for those in most need. Having made such a qualification the whole thrust of actions taken is to find ways of excluding people; the aim is to target a smaller number of people. This establishes need in solely monetary terms and results in a downward spiral to exclude more people. A second major concern is the narrow medical view of functionality taken. Rather than facilitating disabled people to be included in society the assessment framework represented presents a series of discrete functions – mostly basic functions at that. The UK led the world in establishing a social model of disability, one that replaced the narrow clinical basis associated with a more medical model. The PIP criteria represent a return to the past, to a world of bean counters where disabled people are made up of a set of bodily functions. Just at a time when the UK has signed up to the UN Convention on the Rights of Disabled People it proposes to introduce a system of benefit checking that will result in the UK failing to meet the Convention and Protocol, both of which it has signed and ratified. PIP raises particular concerns in relation to:

 Article 21 Difficulties in accessing information.  Article 26 Degree of support required to participate in and be included in their community and society.  Article 30 Access to and participation in cultural life We discuss these points in more detail below but it is important to note that the framework for PIP assessment criteria proposed will result in the UK not being able to fulfil its commitment to the UN Convention. There appears to be a presumption that some kind of benchmark exists, against which PIP can be assessed. No such benchmark does exist. Had a benchmarking process been undertaken first then a degree of legitimacy could have been afforded a set of assessment criteria. The framework precludes the possibility that a number of low level disabilities can add up to major obstacles to living – an error that is a direct result of the assumptions behind a medical model of disability. Rather than considering that obstacles to a disabled person’s living can be the result of multiple minor disabilities the process emphasises discrete areas with points attached to each. The assessment framework disregards the context in which the disabled person operates. Whether it is the effect of temperature on function – snow and ice preventing getting outdoors, leading to depression, more GP visits and multiple medication – or a host of other factors, the context in which a disabled person finds himself or herself is a major determinant of the individual disabled person’s ability to play their rightful role in society. Context could have easily been embedded into the assessment framework, affording increased validity. That the PIP team chose not do so appears to reveal either a lack of willingness to take this step or a lack of understanding. We hope that the latter applies and the opportunity for review is taken. People involved at all levels of supporting people to claim their correct benefits must be competent, sensitive, and be aware of the limits of their knowledge. This can only be achieved by staff who are valued and well- versed in the principles of independent living. Staff need to be retained for long enough, and be sufficiently motivated by a desire to assist others to obtain what they need and are entitled to. In order to achieve this type of workforce, one of the essential elements is co-production in the design and delivery of training. This would apply also to any contracts let to companies who will be involved at any level in the delivery of the new benefit.

SPECIFIC COMMENTS “As with all tick box questionnaires not everyone fits a box.” Parent of disabled child.

Because it is not clear at this stage who will apply the PIP testing it is not clear what skills, if any, they will bring. Aside from the more obvious concerns that have been expressed by others regarding competence, people not knowing what they do not know, there is a less obvious concern: how skills will be applied within the system. No matter how the PIP assessment criteria are described they are essentially discrete components, that test a limited set of broad areas, with levels applied and weighting attached. Our concerns therefore relate to: 1. Key activities chosen 2. Individual descriptors used to assess within each activity area 3. Weighting attributed to key activities 4. Level given to each descriptor within key activity 5. Interactions between activities and descriptors 6. System within which PIPs will operate We develop these points below.

1. Key activities chosen The major categories chosen appear to be affected by ‘groupthink’ - an unquestioning acceptance of (in this case uninformed) majority opinion. While appearing to reflect a social model of disability they do not because they each derive from a restricted idea of what it is for someone to lead their life – whether a disabled person or not. As UK Government is a signatory to the UN Convention on the Rights of Disabled People there is a concern that in choosing the eleven categories the Government have unintentionally ignored certain articles of the Convention. Articles 21, 26 and 30 relate to:  Article 21 Difficulties in accessing information.  Article 26 Degree of support required to participate in and be included in their community and society.  Article 30 Access to and participation in cultural life This omission is illustrative for two reasons. First, none of the categories used in PIP reflect any of these three Articles. In rejecting them the UK Government could be in contravention of the Protocol to which they are signatories. Second, and to reinforce the problem of groupthink mentioned, the fact that the categories do ignore the three articles indicates a fundamental difference in understanding of the nature of disability. The draft assessment criteria consider disability to be something that is mechanistic, a crude measure of the most basic of human functions. In contrast these three articles breathe life into what could stand as real measures of function through descriptors: to be able to access information, to participate and be included in society and to access and participate in cultural

of 11 Joint Response 31st August 2011 life. An Independent Living approach to assessment would be comfortable with the articles; the PIP criteria are different in nature and scope, being clinically based and biased with a rather narrow understanding of what constitutes disability. Indeed the UN articles have a potential value not only as activity areas but also as a way to scale descriptors within activities. For example the degree of support required to participate in and be included in their community and society can easily be developed into either a category scale or indeed a numeric scale varying along the normal distribution curve. As such they can be developed in ways that are specific and measurable, although we would caution that they should not be used in a ‘greatest need’ approach. We recommend that the UN Convention is considered for its efficacy in addressing major PIP assessment criteria. In order to get to that point the group will need to move away from its strictly medical, diagnostic format and avoid groupthink. The area of communication is poorly represented, an omission that is of particular concern as the assessment notes the importance of participation and participation without communication is an odd concept. The poor treatment of communication is a direct result of having a narrow medical, reductionist interpretation of disability. Many issues result from this omission. To take one example some people may only be able to communicate using a specialised voice output communication aid. The ability to manage finances is an essential factor of daily life, impacting on all other areas, and needs to be considered. The criteria proposed ignore an important co-factor: the effect of the environment on an individual’s ability to carry out daily activities of the type listed. Because the descriptors are essentially medically driven measures of extremely basic human functioning they ignore a significant factor in human survival, the ability to adapt in different environments. In this we are not suggesting that PIPs set out questions around a Bear Grylls’ style response to extreme environments. PIPs should though be able to encompass the individual’s ability to cope with changes in their situation e.g. response to temperature, humidity, terrain changes. Inability to cope and to take remedial action can seriously impair the individual’s capacities. Currently, PIP criteria assume an environment that is a constant - this assumption needs to be re- considered.

2. Individual descriptors used to assess within key activities Any items identified for use within any form of assessment must be reliable and valid - in particular it should have construct validity. These aren’t just technical terms but represent the building blocks to ensuring that a test can be:  Applied by different people at different times and arrive at the same result, unless something has changed about the person being assessed, in which case results should change to reflect that difference.  Measure what it intends to measure – be benchmarked against features that are known to be associated with what is being measured.

Aside from reflecting the aforementioned groupthink approach, for the PIP assessment criteria to be objective they will have to demonstrate these features. Psychologists apply these techniques routinely and we query why there is no representation from the British Psychological Society on the reference group. Reliability is not simply a matter of scoring high on inter-rater reliability (that two people carrying out the assessment reach the same ‘score). High inter- rater reliability may simply be a result of introducing bias by training the assessment users in particular ways. High inter-reliability is of particular concern if those applying the assessment – asking the questions and recording answers – were receiving incentives for rejecting people’s claims or disincentives for accepting claims. Incentives and disincentives should not be related to the outcome of an assessment, if it is to have any credibility. Validity – that test items measure what they are supposed to measure – is of concern because it is not clear what external criteria are being used against which to compare the results of test items. It would be helpful if the assessment criteria were to be used with volunteers in a test period but the key is that the following are transparently applied:  Results subject to statistical analysis – in which it is essential that full factor analysis is undertaken.  Those doing the analysis apply external criteria that are already validated or benchmarked, to show that the criteria are measuring what they are supposed to measure. We are not clear what steps will be taken to ensure that construct validity has been evaluated accurately. Construct validity refers to assessments needing to assess what they are supposed to. It assumes that there is a body of knowledge, in this case around what constitutes disability, that relate to the construct. We are arguing that the construct in question – assumptions used to derive the PIP criteria, the categories used and the weightings accorded are highly questionable. Unless we know what variables are known to relate to the construct in question – disability – there are no grounds to establish correlations with the measures proposed – PIP descriptors. It is therefore important that epidemiologists engaged in this activity publish assumptions on which their analysis is based and that these assumptions are widely shared. These points are fundamental to obtaining results that can offer confidence to disabled people that their interests are foremost and that this is not simply an exercise in cost-cutting. It was requested at one of the consultation meetings in Edinburgh that the specification for the pilot exercise tender was publicly shared, and it was agreed that this would be looked into. We have had no further response from the DWP on this matter. We highlight another key activity noted – relating to mobility. The threshold seems to have been set far too high for planning and following a journey. A more realistic activity area from which descriptors would follow is that mobility is considered to be ‘being able to go where you want to go and leave when you want to leave’. Using such an activity level would allow more straightforward incorporation of descriptors that are sensitive to different environments. Practical example: with a guide dog and following a route

of 11 Joint Response 31st August 2011 familiar to both, a blind person may be able to reach a destination; without a guide dog or negotiating an unfamiliar route the person is severely affected. Not to recognise this kind of distinction would be ludicrous. A suitable descriptor would be general enough to include many impairments but be contextualised by the life event being addressed.

3. Weighting (scoring) attributed to key activities Each of the eleven key activities are given a weighting. The approach taken here is high risk and, if introduced in its current form, would likely to be associated with increased deaths, morbidity and co-morbidity. Managing medication and monitoring health conditions is given a low scoring. While for some a low scoring may be acceptable there are many for whom an inability to manage medication will mean they cannot participate in any other areas of key activities. The approach taken, tick-boxes and associated scores and weightings are the direct opposite of human experience. An inability to manage medication can result in death, extreme pain, chronic fatigue, withdrawal from society and a host of other conditions that impair an individual’s ability to participate in daily life. We urge DWP to re-consider this factor and recognise that an inability to manage medication is associated with high scoring and any variation be picked up at the descriptor level to establish variation.

4. Level given to descriptors within key activity item There are numerous anomalies e.g. if a person can complete tasks using a wheelchair or other aids bought with PIP / DLA they will then be assessed as not having that need because they can use that aid successfully. But without the aid they cannot complete the activity, resulting in the kind of Catch-22 that Joseph Heller could not have dreamed up. The definition of continual assistance versus prompting will be difficult to apply. We understand that DWP have undertaken to look at this again. Other omissions:  Activity for washing/bathing the lower part of the body from the waist down – including legs and feet.

 Management of bowels excludes cleaning

People going for assessment will need advice on communication questions. Communication skills are too easily overestimated.

5. Interactions between activities and descriptors It is here that the most profound concerns must be addressed if the approach proposed is to have any chance of being viable. Human beings are highly variable in their biological make-up and in their response to their environment of people, places, objects and events. The approach proposes to introduce a flat tick-box system and attribute weighting to account for variability. This approach ignores the combinatorial and conflict effects where ‘scores’ on descriptors between key activities can have significant effects. Currently they assume no inter- activity combination or conflict. We have already pointed to

of 11 Joint Response 31st August 2011 one area in which this of particular concern: the interaction effect of medication (currently low scoring) potentially on all other areas of assessment. Currently descriptors assume that the person is achieving to their full potential. Other simple practical examples would be cooking a meal interacting with taking medication or managing finances interacting with purchasing ingredients for a meal. Someone who takes their medication may be able to cook a meal but without medication or budgeting skills, such an activity may be impossible. Consideration must be given to interaction effects where a score on one area coupled with a score in another area will have more than an additive effect. The most obvious example is medication but almost any item will have an interaction effect with another item(s).

6. System within which PIPs will operate This area considers the system within which the new PIP assessment criteria will be delivered.

1. The draft criteria make a virtue out of the use of proxy measures. We propose a separate area in which proxy measures are applied: to the rigour with which this system is evaluated. Financial penalties should be applied to the agency that carries out this work where failure demand arises (e.g. appeals). We propose that failure demand is used as a proxy measure for the inability of the agency to deal with variability in the system. A high level of failure demand in many other areas – increased problems with HMRC, Audit Commission and other public agencies - has been shown to be a clear indicator of systemic failures. Most often these have been a result of applying an approach that discounts variability in the system, in favour of a rules-based system. Often it is associated with the tick-box approach of just the type proposed by DWP. A courageous step for DWP to take would be to incorporate measures of failure demand and to introduce penalties concomitant on failure demand above a certain level. The most obvious measure of failure demand would be where disabled people who should get an award do not get it, either at all or get it at the wrong rate. There is only one way that this currently will be able to be assessed – referral to independent appeal. Where the referral case is lost by DWP the loss should incur significant financial penalties for the company undertaking the assessment. If this does not happen a commercial firm will profit while the public purse will carry the cost of their failures – a situation that will ring many alarm bells following recent experiences with the financial sector and the current public cost of dealing with ESA appeals. 2. The system being applied appears to assume that costs are associated with transactions; that PIPs will be rules-driven and thus reduce administration costs, delivering better value for money. There remains a major problem that a rule-based system, even one with a proven track record, and PIPs cannot lay claim to this, will fail to absorb the variety of demand. The result? Costs will be driven up but at the same time as financial incentives will have been put in place to reject claimants. In other words, those applying the system will increasingly rely on the system’s

rules and believe them to be right. Disabled people, some of them the most vulnerable in society, will be losing benefits while commercial firms reap profits. 3. Use of incentives and disincentives: above we identified the problems associated with introducing a reward system for those making decisions on the allocation of public funds to disabled people. Under the ESA system ATOS receives £100 per claimant Mon-Fri for 8 hour days with a performance bonus paid. This is money that could be going to disabled people. 4. PIP review of assessment addresses those of working age 16-64 years. There is anomaly between this area of policy and the removal of upper age limit for working age, in part associated with the Equality Act 2010. We understand that this will be addressed through a working group set up to deal with ‘qualifying areas’. 5. There is already a multitude of sources of information to support the need of many disabled people to receive benefit. We would urge detailed consideration of the proposal that the process should be two-staged - first self-assessment, then face to face assessment if necessary, to go over what is stated on the self-assessment form. This would also have the benefit of giving the disabled person time to gather their thoughts and talk things over with their advocate or other source of support. 6. The context in which welfare reform is taking place - of local authority cuts in services - can not be dismissed as simply being due to ‘local issues’. All funding for services and disability benefits ultimately comes via taxation. Consider the effect of loss of DLA / PIP due to the new assessment test (and it is clear that disabled people will lose out – cuts to the payments were announced at the outset and it is clear there is very little fraud from which these savings will come, or on the other hand employers willing or able to take on disabled employees) on people who need support to go to the toilet at night, and who are subject to the same treatment as demonstrated in the recent MacDonald case of someone being made to wear incontinence pads at night and thereby not receiving a night carer. If any credibility is to be attached to the proposed aim to increase ‘fairness’ then equality of opportunity, and welfare benefit’s role in that, can not be disregarded.

For further information please contact:

Stuart Aitken: Senior Consultant – Sense Scotland [email protected]

Megan Wilson: Head of Public Affairs – Sense Scotland [email protected]

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