Personal Independence Payment Draft Assessment Criteria

Response from Mind About Mind

Our vision is of a society that promotes and protects good mental health for all, and that treats people with experience of mental distress fairly, positively, and with respect. The needs and experiences of people with mental distress drive our work and we make sure their voice is heard by those who influence change. Our independence gives us the freedom to stand up and speak out on the real issues that affect daily lives. We provide information and support, campaign to improve policy and attitudes and, in partnership with independent local Mind associations, develop local services. We do all this to make it possible for people who experience mental distress to live full lives, and play their full part in society.

Introduction
Mind welcomes the opportunity to comment on the draft assessment criteria for the new Personal Independence Payment (PIP). We recognise that, in light of the budget constraints being imposed, it is vital to get the assessment right so that the benefit is targeted at those who need it most. Having recently worked on proposals for improving the Work Capability Assessment (WCA) descriptors, we also recognise how difficult it is to develop a comprehensive, fair and accurate assessment. However, we do have some serious concerns about these proposals and the impact that they could have on the likelihood of people with mental health problems successfully qualifying for PIP. These concerns are based on our past experience of how the welfare and benefits system deals with mental health but also informed by comments from a focus group on DLA/PIP that we organised after the draft criteria were released, and input from visitors to our website.

Mind is also part of the Disability Benefits Consortium (DBC) and supports both the DBC response to these proposals and the alternative criteria proposals that the DBC has produced.

Our concerns
Our concerns fall broadly into two categories: some fundamental issues about the reforms and the approach being taken and some more specific concerns about the draft proposals. We recognise that there is a policy objective that has been set by Ministers and that these decisions are beyond the scope of the assessment team. However, we feel obliged to reiterate our concerns about the impact of both the principle and the details of these reforms. Fundamental concerns In terms of our fundamental concerns, there are four key interlinked issues: 1. The policy objective: As stated above, we recognise that the decision to cut 20 per cent from the future budget of DLA (or PIP) is one taken at Ministerial level. However, we still believe that the potential impact on individuals, and the knock-on costs for health and social care, of removing this benefit from people considered to have lower needs has not been fully considered. DLA payments can play a hugely important preventative role for people with mental health problems. By keeping people engaged, involved and independent within their community, they can be helped to recover from their mental health problems and avoid relapsing. There is also a significant consequence of this policy for the creation of a new objective assessment. People who are due to be assessed (or reassessed) under the new system will feel, rightly so, that their eligibility will dictated as much by the available budget as by their needs. The objectivity of an assessment that needs to achieve a specific, targeted saving is fundamentally undermined by this imperative. This policy was introduced partly on the basis of issues around the credibility and integrity of DLA as a benefit. We feel that for a benefit to have credibility and integrity there needs to be a clear definition of who should be eligible to receive it. Although such a profile of a likely claimant is undoubtedly difficult to define, without it there is no real standard by which to judge whether the benefit is being awarded fairly. With any assessment for a benefit, there is both a proximate reason for eligibility (i.e. fulfilling certain criteria within the assessment mechanism) and an ultimate reason for eligibility (i.e. that the applicant fits a certain profile for whom the benefit is intended). If the ultimate reason for eligibility is not very clear, as we would suggest has been the case with the Work Related Activity Group for ESA, then there is a tendency for the proximate reason for eligibility (such as scoring 15 points on the WCA) to become the de facto ultimate reason. This is problematic because it both 2

undermines the integrity of the benefit and leads to confusion amongst applicants about their likely eligibility. 2. The purpose of the assessment: Intrinsically linked to the issue of who should be receiving the benefit is the need for a clear definition of what the assessment is trying to gauge. If there is a lack of clarity about why someone should be eligible for PIP then this will also result in uncertainty about what is being assessed during the application process. As suggested above, this has been a significant issue with the WCA and we are concerned that these issues will be replicated with PIP. The DLA Consultation document talked about PIP contributing to the extra costs of overcoming the barriers faced by disabled people as well as identifying those who face the greatest need; while the draft assessment document includes a commitment to focus on an individuals ability to participate. Although these are each important factors to consider, there is no guarantee that they will identify the same people. We recognise the difficulties with trying to directly assess additional costs but if the intention is still to try and focus the benefit on those with the highest additional costs then the potential proxies around severity of condition or need that have been identified need to be thoroughly tested to see how effectively they predict or indicate this. Although we understand that Ministers are keen to focus the new benefit towards the severe end of disability, the use of greatest need is problematic as a means for awarding the benefit. There needs to be a serious consideration not just of how much someone needs assistance but also on what the impact of assistance might be. There will be situations where a very severe impairment suggests a high level of need but where additional support will have a minimal marginal impact. Whereas there will be other situations where a more moderate need could be substantially addressed by a small amount of assistance. There also needs to be a consideration of what other support people have access to: someone on lower or even middle rate care because of their mental health may well not qualify for social care and could be left in a very difficult position should their benefit be withdrawn. If the focus is to be on enabling participation, then to some extent this may be even harder to measure than extra costs or need because of the unclear nature of what participation consists of. As the DWPs own research points out, the potential costs of addressing someones needs may be very different to the way in which they currently cope with their situation. 1

Review of the existing research on the extra costs of disability, 2005, DWP Working Paper 21, p6

3. Threshold of eligibility: To some extent, the discussion above of whether the benefit is assessing extra costs, level of need, or ability to participate may be academic, since the draft descriptor proposals seem to actually focus on the basics of existence. The technical note refers to these basics as prerequisites for enabling participation but awarding the benefit on this basis is a significant departure from how DLA has been functioning. The types of activities referred to in the descriptors may be necessary in order to participate, but they are by no means sufficient to do so. We are concerned that this approach will prove particularly problematic for people with mental health problems since they may find that despite having substantial need, extra costs and barriers to participation, they are not eligible because they can fulfil the basic functions of existence. Although we understand why such an approach may have been taken, i.e. to achieve the policy objective of a specific budget reduction, we do not believe that it is accurate or representative for the reforms to be described and publicised as focusing on participation. Many people with mental health problems currently use DLA to maintain social contact, either through travel expenses incurred in visiting people or through taking part in groups or activities. If the new benefit continues to be described in terms of participation then there is a serious risk that people will develop an unrealistic expectation of the type of needs that the benefit is designed to support. I want to live, not just exist. Focus group participant Because youre in this situation - youre not well you feel like youve lost your self respect and self esteem in some aspects, and to be with other people who know where youre coming from does you the world of good. Focus group participant DLA means I can get taxis home after my support group. Im not sure I could go now if I had to walk home from the station at night. Mind blog comment Not only do the current descriptors suggest a very high threshold of eligibility but, once the actual scoring is applied, it is likely that people will need to score across a number of areas in order to qualify, making it even less likely that many of the people we represent will be able to obtain the new benefit. 4. Fairness and accuracy of assessment: Once it has been decided who the benefit is intended for and how eligibility will be assessed, the next consideration should be how fairly and accurately the actual assessment process makes decisions on eligibility. Due to the issues we have observed with the WCA when assessing people with mental health problems, it is inevitable that we have concerns about the ability of the new system to treat such people fairly 4

and assess them accurately. Although it has been emphasised that this assessment will be very different from the WCA, there are clear similarities in the draft proposals and we expect a similar contracting arrangement to be established with a provider like Atos. Given these circumstances, we expect to see replication of many of the issues that have occurred with the WCA in the new PIP assessment. Although there were substantial problems with the DLA assessment process for people with mental health problems, we know that many such people nonetheless qualified despite it not being clear which criteria they fulfilled. This apparent informal compensation within the process is clearly not ideal and we are pleased that it seems the intention of the working group was to ensure that mental health problems were properly recognised within the new process. However, due to the high thresholds of eligibility and the shift in assessment process towards a WCA-like format, we are very concerned that the new benefit will be harder for people with mental health problems to obtain despite the more explicit recognition of their needs in the draft criteria. Overall we feel that there is a substantial gap between the rhetoric in the technical note around taking better account of mental health and the reality of the descriptors and eligibility thresholds. We would be more comfortable with the draft assessment if some of the reassurances included in the technical note, such as the need for descriptors to be performed repeatedly, reliably and safely, were included on the face of the descriptors to ensure that this is fully taken into account by assessors. Specific concerns Alongside the fundamental concerns with the policy and process discussed above, we have some more specific concerns about how the draft proposals would impact on people with mental health problems. These focus on how well the assessment will take account of mental health problems and some particular impacts of mental health problems which we do not feel are covered by the proposed assessment. 1. Required period condition: We are very concerned that the increase in the required period condition and expected duration of condition means that people with mental health problems will not be well served by this benefit. Firstly, we are concerned that people will not be able to access support from PIP during the early stages of their condition, which means that they are more likely to move towards a more severe state. This has implications for peoples ability to stay in work and to recover effectively. Secondly, because mental health problems can be intermittent and unpredictable in terms of their duration and future severity, we believe that it will be difficult to predict the impact of a condition over such a long period of time. Conditions may be just as likely to worsen over this period

as they are to improve. 2. Fluctuating and intermittent conditions: Being able to accurately and fairly assess the impact of fluctuating and intermittent conditions is fundamental to getting the PIP assessment right when it comes to mental health. Unfortunately, we are concerned that the positive discussion of this area in the technical note is not reflected in the reality of the proposed descriptos. The technical note (points 6.18-6.21) includes some very encouraging remarks in terms of considering a 12 month period rather than simply how the applicant appears on the day of an assessment. We are also pleased that improvements in someones condition will not simply be assumed, particularly in light of the extension to the qualifying period for the benefit. However, the fact that someone needs to qualify for a descriptor for the majority of the time in order to be eligible is worrying and risks repeating some of the problems seen with the WCA. One key problem with the WCA that we have identified as part of our work on the descriptors is that it is ineffective to measure multiple indicators of an impairment on a linear scale. If someone has a severe impairment but this only occurs around 30 per cent of the time, then they will not score, but if someone has a moderate impairment for 50% of the time they will. This does not seem to be an accurate reflection of need or additional costs. We believe that, in order to fairly and accurately assess the impact of a mental health condition, the applicant needs to be asked about the frequency, severity and duration of their condition. It may be that such a measure is tagged onto the assessment as a separate descriptor or it could be integrated into the descriptors themselves. This was one of the key recommendations from our work with Mencap and the National Autistic Society in our proposals for improving the WCA descriptors and we would be happy to discuss this further. 3. Support, assistance, prompting and supervision: Linked to the issue of fluctuation is the regular use in the descriptors of the terms assistance and prompting, described as either continual or intermittent. Although we welcome the focus on the support that people need, as a more accurate proxy of additional cost than simply the extent of their impairment, we are concerned about the implications of these terms and the way they are defined. We are also concerned that the level of support needed is over-relied upon in the assessment and that significant areas of need or cost that do not imply a need for support may be missed as a result. The fact that continual and intermittent will refer to the duration of the task concerned rather than, for example, the day is problematic: We do not feel that this is necessarily a reflection of the costs involved. Although it is stated in the document that additional costs are hard to directly assess, this does not mean that the opportunity to differentiate on this 6

basis should not be taken where appropriate. If someone will require assistance or prompting intermittently during a task, then this is likely to have similar cost implications to requiring this support constantly during the task. It is also unclear how this will be assessed in practice and how clear the line between continual and intermittent support is. Furthermore, many people with mental health problems may require support that is more accurately described as supervision, i.e. having someone around all or most of the time as a potential source of support but not necessarily needing support with specific activities on all occasions. Supervision is something covered in the assessment of DLA and it is concerning that it has been dropped from the new assessment. As above, supervision may well have a similar, or even greater, cost implication than requiring support with specific tasks, but this is not picked up by a focus on prima facie need. This ties into the discussion of fluctuation above in that someone with moderate but frequent needs is being assumed to be more deserving of PIP than someone with infrequent but severe needs. We would therefore suggest that it is necessary to look at the frequency, intensity and duration of support that is required in order to get an accurate picture of the barriers an applicant faces. personal support for managing distress, dealing with basic living tasks and doing things outside of just living is better done for some people on an ad hoc basis because mental health can fluctuate so much Mind blog comment 4. Areas not covered by the descriptors: There are a number of key areas where people with mental health problems face substantial extra costs that we do not feel are sufficiently covered by the proposed descriptors. A fuller analysis of what additional descriptors are needed and how the proposed descriptors could be improved is included in the DBCs alternative proposals for the assessment, which we were involved in designing. One of the areas people with mental health problems face additional expenses is utilities. These additional costs can occur for a number of reasons: because people spend more time in the house due to anxiety or agoraphobia and hence use more heating and electricity; because they may be more reliant on telephone or internet as a means of communication due to problems getting out of the house and with social contact; or because of the therapeutic benefit they experience as a result of the social contact that internet and phone provide.

Utilities are important - People need help with more electricity costs because they are in the house more. Focus group participant I use the phone a lot as I am not always well enough to go out and socialize. Talking on the phone and using the internet mean I don't feel alone. Both these things cost money. Mind blog comment Having internet access is crucial to me. I can manage all my finances and bills online which means I don't have to have direct contact with utility companies, bank etc. It also allows me to keep in touch with the outside world and what's going on, made me feel less isolated and it's enabled me to learn more. Mind blog comment We also believe that maintaining a safe and healthy home and environment is a vital requirement and that the assessment doesnt currently account for this. People with mental health problems may struggle to maintain their home or keep it clean and safe due to motivational issues or a lack of awareness. This has an impact both in terms of the additional costs of addressing the situation but also the health and safety implications of the situation not being adequately addressed. You accommodate your illness with your household, so you dont really know that your house is deteriorating with you. So one day you wake up and you have a visitor and they see that its like a whirlpool has hit your house. Focus group participant You need help with organising your environment. Focus group participant Another area where people experience additional costs is in simply managing their condition. This may involve maintaining certain routines, accessing non-prescribed therapies, and undertaking exercise. Although we recognise both the difficulty of covering such a wide range of activities within the assessment but also the limitations on the budget for PIP, we do believe that an attempt by the assessor to discuss more general additional costs with the applicant and include this information in their report would be beneficial in helping decision makers judge need and eligibility.

The proposed descriptors

Below are some specific concerns with the descriptors that have been proposed in the draft criteria. As above, a fuller analysis of how the proposed descriptors could be improved is included in the DBCs alternative proposals for the assessment, which Mind fed into. Daily Living component 1. Planning and buying food and drink: Although we welcome the introduction and scope of this descriptor, and the focus on mental health within the accompanying notes, we believe that continual prompting is a very high threshold to meet and may not be reflective of the type of support that people actually require in this situation. It is also unclear why being able to buy a meal is less important or indicative of need than planning a meal. We feel that there is an important area of need that is not covered here in terms of the additional costs of certain dietary requirements that may entail from health conditions and also the tendency to buy more expensive, pre-prepared food due to issues of motivation. Because of the effects of medication I find it a lot easier to buy processed food, which is more expensive. Focus group participant It should also be taken into account that buying certain types of food can be particularly important for maintaining and improving mental health and that this can lead to additional costs. 2. Preparing and cooking food: As above, we believe the focus on the need for continual prompting or assistance here is problematic as it is not entirely clear what this would mean in practice. Since there is significant risk involved in preparing and cooking a meal, this is an ideal example of where supervision may be just as important (and costly) as assistance or prompting. 3. Taking nutrition: This descriptor does not seem to apply to people that we represent but we do believe that this should be an area where eating disorders are considered. 4. Managing medication and monitoring health conditions: Although we agree that this is an important area to consider, the exclusive focus on the support required in this area may be misplaced. The most substantial additional cost that many people will face in this area is the cost of prescriptions. The cost of medication is huge. I cant afford the prescriptions. Focus group participant

We are also concerned about the wording of the descriptor in terms of the specificity of how often support will be needed. Not only is this very difficult to assess accurately for mental health conditions but it also raises the issue again of whether someone with moderate but frequent needs is more deserving than someone with infrequent but severe needs. If someone is, during intermittent spells, at risk of self-harm or suicide and needs supervision at these times, despite clear need it is difficult to see how they will score on this descriptor. 5. Managing prescribed therapies other than medication: It is unclear exactly what sort of therapies, and what sort of assistance would be relevant here for people with mental health problems. Again, the heavy focus on the support required may be unhelpful in this scenario: if someone needs to attend a talking therapy, their main additional costs may come from the transportation required to attend rather than the support entailed by attending. 6. Washing, bathing and grooming: As above, it is far from clear that continual prompting or continual assistance is reflective of the type of support people with mental health problems may require in these situations. The specificity of the descriptors also means that someone who would struggle to maintain their appearance and hygiene without support or supervision may not fit a particular descriptor but would nonetheless surely be lacking this prerequisite for participation. It is also deeply concerning that it is considered adequate to support people only up to above a level of self neglect. This is hardly reflective of a level of hygiene or grooming that would be widely acceptable within work and/or social situations, which again undermines any sense that PIP is concerned with supporting participation. 7. Managing toilet needs or incontinence: As above, a threshold of continual assistance seems extremely high for an area of impairment that can fundamentally limit an individuals ability to participate. 8. Dressing and undressing: We feel that this descriptor should also cover the support someone with a mental health problem might need in this area as a result of low motivation. As such, we believe that the DBCs proposal of preparing to start/end the day is a much more holistic, comprehensive and accurate focus than simply dressing and undressing. 9. Communicating with others: We are very concerned that, for an assessment that claims to focus on participation, the only explicit mention of social participation requires the applicant to experience overwhelming psychological distress or exhibit behaviour that leads to substantial risk of significant distress. This threshold of eligibility will mean that a huge number of people who experience significant barriers to social contact and participation (and encounter additional costs as a result of this) will not be able to obtain PIP and will lose out on vital 10

support. My DLA pays for some social acivities which I am able to do and which helps me feel better. Mind blog comment Mobility Component 1. Planning and following a journey: This is a key area for many people who claim DLA, or would benefit from claiming DLA, due to a mental health problem. Many people with mental health problems struggle to leave the house and/or use public transport because the psychological distress this causes. DLA acts as a lifeline for these people in terms of keeping them socially (or sometimes economically) active which in turn helps to maintain their health. I am unable to use public transport as it just panics me too much. I therefore rely on my car to get places. Mind blog comment Using public transport is extremely difficult for me unless I've got somebody to accompany me, so DLA goes towards the running costs of my car. Mind blog comment You need DLA to move around, sometimes you cant get on a bus and need to get a taxi because youre like I need to get home right now Focus group participant Getting around is hard because sometimes I get lost and disorientated. Focus group participant Not only is the threshold for the proposed descriptors extremely high (causing overwhelming psychological distress) but they seem to contradict the earlier commitment to recognise fluctuation in that the notes state that If the person is able to leave the home on any occasion without another person then this descriptor is not satisfied. Although it has been suggested that this will be filtered by the manner in which fluctuation is to be considered (i.e. that this will only have to be the case the majority of the time during a 12 month period) it is not clear how this will function in practice. 2. Moving around: This descriptor applies exclusively to physical impairments.

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