PIP briefing notes and draft assessment regulations

ecdp comments August 2011

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Contents
Executive Summary ............................................................................................4 PIP briefing notes and draft assessment regulations: ecdp comments...............2 1. Introduction......................................................................................................8 Structure of this response ................................................................................8 First meeting of our PIP reference group.........................................................8 Second meeting of our PIP reference group....................................................8 2. Involving Disabled People.............................................................................10 3. Claim Journey................................................................................................12 Required Period Condition.............................................................................12 Application and Assessments.........................................................................13 Review............................................................................................................15 Appeals ..........................................................................................................16 4. Communication..............................................................................................18 Office for Disability Issues: Digital inclusion and disabled people.................19 Face-to-face communication .........................................................................20 Notifications....................................................................................................21 5. PIP Assessment Criteria................................................................................23 Reflecting the Lived Experience of Disabled People......................................23 Social Model Approach...................................................................................24 Choice and Control ........................................................................................25 Holistic Assessment ......................................................................................26 PIP Assessment Process...............................................................................28 Appendix About ecdp......................................................................................29

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Executive Summary
E1. This is ecdps response to the initial draft assessment criteria for Personal Independence Payment (PIP) and the accompanying policy briefing notes published by Department for Work and Pensions (DWP) in May 2011. This response is in addition to initial feedback ecdp submitted to DWP in July 2011. It is informed by the lived experience of ecdp members gathered through: A dedicated PIP Reference Group of approximately 20 people of all impairments, which has met twice A dedicated online survey, which received 50 in-depth responses A further focus group with 22 members, who were interested in adding their contribution to the previous work of the PIP reference group Experiences captured from ecdps Lived Experience Log Discussion and feedback provided through ecdps various social media channels, including Twitter and Facebook. E2. ecdp members had a number of positive comments and constructive recommendations about how the new Personal Independence Payment (PIP) can best work. E3. However, there was naturally a great deal of concern about how changes might affect their ability to continue living independently and contribute meaningfully. E4. ecdp feel that it is essential that Personal Independence Payment reflects the lived experience of our members and so welcome the assurance that DWP will work with disabled people, their organisations and carers in reforming Disability Living Allowance (DLA). E5. Concerns were raised around the potential impact of changes for those already using DLA. Even if existing users will continue to receive support through the PIP benefit, it was felt that the process of reassessment needed to be made clearer.

E6. As well as meaningful consultation while developing and implementing the PIP benefit, members also emphasised the importance of disabled people being central to their own claim journey. Some felt that a system of self-assessment would be a more empowering approach, and one which places the claimant in a position of control over their own support.
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E7. We find the alignment of the definition of those who are potentially eligible to claim PIP with the legal definition of disability (as per the Equality Act 2010) broadly favourable. However, while the twelve month total of the qualifying period and the prospective test seems sensible, we would suggest that this does not necessarily need to be set at six months for each, especially in cases where the impairment will definitely be long term. E8. Our members felt it would be useful to have a clearer understanding about what training assessors would have, and whether this would be impairment specific. E9. Some concern was raised around how assessors working within an objective system will also adequately take account of the different life circumstances of claimants and their different impairments.

E10. Given the move away from indefinite life-long receipt of DLA and towards fixed-term PIP awards, we feel it is essential that review periods are proportionate to likelihood of change in the individuals impairment or lifestyle. E11. Members were supportive of an approach to review which reflected the nature of their impairment and the likelihood of change. It was hoped that this would prevent the situation that some members had experienced where changes in their DLA award did not properly reflect their situation and lengthy reassessment had to be undertaken in order for it to be reinstated. E12. Based on their own experience of appeals, members felt that the high number of cases that have to be reassessed in this way could be prevented by adequately assessing cases in the first instance. E13. ecdp therefore support the move towards ensuring that initial assessment is transparent and objective with the view to reducing unnecessary disputes and appeals. In order to reinforce faith in the fairness of the system, it is important that the reconsideration process is also transparent. E14. ecdp members are naturally supportive of a move towards making the entire process easier to navigate and therefore generally more accessible. E15. It is important to note that overly-complex information is not just a barrier to those with impairments that affect the way they communicate or understand information, but to all individuals. E16. Due consideration needs to be given to the availability of information in a variety
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of formats, and attention to the individuals preference in terms of format early on in the process could easily address some of the difficulties members had experienced. E17. The creation of an online claim facility in addition to the paper claim form would open up access options for many disabled people who use digital technology, but this should not be seen as a replacement for a variety of these more traditional formats. E18. Making supporting information available in a wider range of places that disabled people regularly access or that are open to the community could make accessing support throughout the process more accessible, especially during the transition period. E19. The fact many members had accessed support from impairment-specific disabled peoples organisations, often because they catered for specific communications requirements, reinforces the need for peoples access needs to be met by DWP itself so that they do not have to seek this extra support. E20. The opportunity to communicate face-to-face with assessors was largely welcomed by members, especially given that some preferred not to use written communication. However, concern was expressed by some that this could lead the individual to feel that they were out of control, so care would need to be taken to ensure this process was user centred. E21. Members of the group felt that regular notifications, both throughout the initial application process and if any changes were to take place thereafter, would be useful. They welcomed the move towards improved notifications. E22. It is reassuring to note that DWP are keen to discuss the draft assessment criteria with disabled people and their organisations, in line with the goal of involving disabled people, as discussed above. E23. Three positive elements raised in the draft assessment criteria technical note are particularly worth noting: That DWP have sought to develop an assessment which considers and reflects a broader range of impairment types than Disability Living Allowance The step away from a medical model approach to assessment and towards one which looks at the barriers an individual may face in participating The aim to ensure that disabled people have the same choices as nonPIP briefing notes and draft assessment regulations: ecdp comments Page 6 of 29

disabled people.

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1. Introduction
1. This is ecdps response to the initial draft assessment criteria for Personal Independence Payment (PIP) and the accompanying policy briefing notes published by Department for Work and Pensions (DWP) in May 20111. This response is additional to initial feedback ecdp submitted to DWP in July 20112. Structure of this response 3. This response has been informed by the lived experience of ecdp members. In order to gather this evidence, ecdp has established a PIP reference group, formed of members with different experiences of both impairment and of claiming Disability Living Allowance (DLA). First meeting of our PIP reference group 4. Following the publication of the draft PIP assessment criteria and the accompanying policy briefing notes, the PIP reference group held a structured discussion around the key issues raised. This group looked at: The DLA journey from the perspective of the individual How the initial information was acquired The application and assessment process The ways individuals have used DLA, where applicable3. Our aim was to gain an insight into the entire process people move through in order to understand which elements had been positive and can be built upon, and which could be improved when looking towards the new system. Second meeting of our PIP reference group
1

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DWP Policy: PIP briefing notes and draft assessment regulations: http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reformbill-2011/personal-independence-payment-briefing/ 2 ecdp PIP briefing note and draft assessment regulations http://www.ecdp.org.uk/home/2011/6/8/pip-briefing-notes-and-draft-assessment-regulationsecdp-com.html 3 PIP briefing notes and draft assessment regulations: ecdp comments Ibid Page 8 of 29

6.

The issues surrounding the proposed assessment criteria were discussed in a second meeting of the PIP reference group. However, rather than focus on specific tests or activities, the discussion centred around three more general key questions: How does your impairment affect your day to day life, in terms of need and cost? How has DLA and how could PIP mitigate these affects? How could someone else for example, a DWP assessor best understand the above? Additionally, ecdp has carried out an in-depth online survey, which received 50 responses and a further focus group with 22 members who were interested in adding their contribution to the previous work of the PIP reference group. The questions asked in all discussions groups and the survey were drawn from key points within the policy briefing documents4. To avoid repetition this report is structured around these key issues, rather than the policy documents individually. Where they directly relate to points in the policy briefing documents these are appropriately referenced in the footnotes. Note: where comments focus on peoples past experiences of the existing benefit system, we refer to DLA, and where looking towards the new system, we refer to PIP.

7.

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PIP briefing notes and draft assessment regulations: ecdp comments Ibid
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2. Involving Disabled People

10. Members of the ecdp PIP reference group had a number of positive comments and constructive recommendations about how PIP can best work, based on their own lived experience. However, there was naturally a great deal of concern about how changes to a benefit which has supported many members of the group to live independently and contribute meaningfully to society might affect their ability to continue doing so. A previous survey carried out by ecdp found that 93% of people said they were very or quite concerned about changes being introduced to DLA. 11. ecdp and our members feel that it is essential that the Personal Independence Payment reflects the lived experience of our members. We welcome the assurance that DWP will work with disabled people, their organisations and carers to ensure that the claiming process will be clear and easy to understand and navigate5. Some specific information about how this will work in practice would be useful. 12. Concerns were raised by the group that special attention needs to be paid to the potential impact of changes for those already using DLA. Even if existing users will continue to receive support through the PIP benefit, it was felt that the process of reassessment needed to be made clearer: I can foresee a situation where people who are used to receiving DLA are going to become unstuck because its not being explained very well.6 13. Members felt that consultation with User-Led Organisations, which in turn can discuss key issues with their members, would support DWP to ensure that disabled people across the country were represented and therefore that the transition to PIP was a smooth one: [DWP is] just one organisation set in part of the country. ULOs should be involved, perhaps one per area.7 14. As well as meaningful consultation while developing and implementing the PIP benefit, our members also emphasised the importance of disabled people being central to their own claim journey:
5 6

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Users should be involved throughout and once PIP is in place. People could then contact user groups with thoughts.8

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3. Claim Journey
Required Period Condition 15. As previously stated in ecdps response to the Governments Disability Living Allowance reform consultation, we find the alignment of the definition of those who are potentially eligible to claim PIP with the legal definition of disability (as per the Equality Act 2010) broadly favourable9. 16. However, the experience of DLA users we have consulted with suggests that the other financial and in-kind support mechanisms10 available in the shorter term are not always easy to access immediately. This can leave people without the required support. For example, one claimant had a contact who had been left struggling financially and feeling very isolated as she could not leave her house without assistance.11 17. Indeed, 43% of survey respondents were not at all aware of financial or in-kind support they could access and a further 13% had tried to access other support while waiting to claim DLA but were unable to. Significantly, 42%of respondents had faced problems during this period while waiting to claim DLA. 18. The high number and severity of the issues faced by disabled people waiting to claim need to be considered. The impact of financial hardship has huge impacts on health and wellbeing and therefore has cost implications for other services, notably the NHS. 19. While waiting to be entitled to claim DLA, members reported experiencing I was not able to pay bills and was almost evicted from my home.12 [I]n the intervening period of three/four months I had been forced to arrange a lease on a car to allow me to get about as I was living in a rural area.13
9

DLA reform consultation: ecdp response (point 15) PIP Policy briefing note: Required period condition (point 1) 11 ecdp PIP reference group member 12 ecdp DLA/PIP survey respondent 13 PIP briefing notes and draft assessment regulations: ecdp comments ecdp DLA/PIP survey respondent
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[I faced] poverty due to being unable to work.14 I struggled to pay for the things I needed to keep on top of my disability.15 20. It is therefore our proposition that whilst the twelve month total of the qualifying period and the prospective test seems sensible, this does not necessarily need to be set at six months each, especially in cases where the impairment will definitely be long term, or indeed permanent. Application and Assessments 21. This section focuses on how the process of acquiring DLA has worked for people previously, and how this can be built upon through PIP.

22. Specific points around communication, including the application form and assessment, are discussed specifically later in this report. The new assessment to determine entitlement will be fairer, more transparent and objective. It will provide individuals with the opportunity to explain their individual circumstances and for independent assessors to clarify points with them.16 23. In terms of involving disabled people as discussed above some clarity around what a transparent system will entail and how disabled people will be involved in establishing and maintaining this would be useful moving forward. 24. One key issue within this is the trained assessors that will be used. Our members felt that it would be useful to have a clearer understanding about what training they would have, and whether this would be impairment specific.

25. A general consensus expressed in the reference groups was that where assessors would see individuals with all impairments, they should have strong training around disability equality and communication skills. 26. The results of the survey demonstrate this is a feeling held more widely; given the option to select as many types of training as they felt should apply, 89.2% survey respondents stated that assessors should have communications training and the same number of people felt that they should have disability equality
14 15

ecdp DLA/PIP survey respondent ecdp DLA/PIP survey respondent 16 PIP briefing notes and draft assessment regulations: ecdp comments 2) PIP Policy briefing note: Delivery the operational approach (point Page 13 of 29

training. 86.5% would like the assessor to have specific knowledge about the impairment of the individual. 27. Some concern was raised around how assessors working within an objective system will also adequately take account of the different life circumstances of claimants and their different impairments. Further expansion on how this would be assured through the training would be useful. 28. Many members feel that assessments should either be conducted by, or take account the opinions of, GPs or consultant specialists. 79.4% respondents wanted a GP involved with their assessment and 82.4% had provided supplementary information from a doctor or consultant previously. Listen to my doctors! They see me a lot more than any assessor would, and my condition is not visible to the untrained eye.17 29. However, for others who perhaps did not regularly need to see a GP or consultant for the long term management of their impairment, different professionals such as social workers or carers were their preferred expert. Social services [should be involved] as they did an assessment of my care needs.18 30. Some felt that a system of self-assessment would be a more empowering approach, and one which places the claimant in a position of control over their own support. Indeed, evidence suggests that self-assessment within social care leads to both better outcomes for service users19 and better use of public resource20. 31. It was felt that this style of assessment, not only more person-centered but more flexible in its methods, gave a more accurate impression of the disabled person as a while. For example, some reported not being able to paint a true picture of how their impairment affects them in the short time available: An assessment of blindness cannot be made in a forty minute appointment. A day is needed to show how blindness affects everyday
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ecdp DLA/PIP survey respondent ecdp DLA/PIP survey respondent 19 Personalisation: A Rough Guide fro4m SCIE, available here: http://www.scie.org.uk/publications/reports/report20.asp 20 Personalisation, Productivity and Efficiency, from SCIE, available here: PIP briefing notes and draft assessment regulations: ecdp comments http://www.scie.org.uk/publications/reports/report37.pdf Page 14 of 29

life.21 32. As part of this wider view of the disabled persons life, some members would like to be able to submit other evidence, for example diaries or photographs: I need for my written statements, composed over time, to be taken as my evidence, because my medical condition means that spontaneous verbal evidence is unlikely to be accurate.22 33. Some also wanted those around them, although not necessarily professionals, or those involved in their care or support, to be involved in their assessment. For some this was a family member (58.5%) or a friend (47.1%). 34. Members feel that the process for the assessment itself was unclear and that they should be made aware of the more specific details around how the assessment would work in practice. For example, it was felt that the number of points allocated to each of the criteria should be made available. 35. Additionally it was thought that it would be useful to give the disabled person an opportunity to view the questions in advance to allow them to think about answers that would accurately reflect their situation: The client should have the opportunity to read the questions beforehand. This would hopefully mean that the assessor will get an answer which reflects the need.23 Review 36. Given the move away from indefinite life-long receipt of DLA and towards fixed term PIP awards, we feel it is essential that review periods are proportionate to likelihood of change in the individuals impairment or condition. This proportionate approach would support the Departments aim for efficiency and also prevent claimants having to give information more often than is useful to the successful management of their case. 37. Our members were supportive of an approach to review which reflected the nature of their impairment and the likelihood of change. It was hoped that this would prevent the situation that some members had experienced where
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ecdp DLA/PIP survey respondent ecdp DLA/PIP survey respondent 23 PIP briefing notes and groupassessment regulations: ecdp comments ecdp PIP reference draft member Page 15 of 29

changes in their DLA award did not properly reflect their situation and lengthy reassessment had to be undertaken in order for it to be reinstated. Appeals 38. Nearly half (48.3%) of those who took ecdps online survey had appealed a decision about their DLA award. This is similar to the existing appeals figures for DLA. 39. Based on their own experience of appeals, members felt that the high number of cases that have to be reassessed in this way could be prevented by adequately assessing cases in the first instance. 40. For example, one member stated that she felt her speech difficulties meant she wasnt listened to during her initial assessment meeting. She felt appeals could be prevented by simply supporting you properly and meeting claimants communication needs in order to listen to the evidence people are giving. Assessors usually write what they want, ignoring all medical records.24 41. Another member, who was Deaf and communicates using BSL and who had appealed three times before successfully claiming DLA, felt that it was possible the doctor who he met with during one of the unsuccessful applications did not understand him. He and other members had accessed external support before their claims had been upheld. Obviously this would put those without access to additional support at a disadvantage. 42. As such, ecdp naturally supports the move towards ensuring that initial assessment is transparent and objective with the view to reducing unnecessary disputes and appeals25. 43. In order to reinforce faith in the fairness of the system, it is important that the reconsideration process is also transparent. Where appeals are necessary, members felt that they should be quick, open, accessible and realistic procedures.26 [T]he DWP should give all papers it holds about a claimant to the
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claimant, so the claimant knows where they stand.27

PIP briefing notessurvey respondent ecdp DLA/PIP and draft assessment regulations: ecdp comments
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4. Communication
44. Throughout this report we have touched on the importance of efficient communication, an issue raised repeatedly during our consultation with members. As such, this section is devoted to how written and verbal communication between the disabled person and the Department can work most successfully throughout. We also touch upon impairment related access issues. 45. The policy briefing note Delivery the operational approach, states that DWP: want to ensure that Personal Independence Payment will be simple for the claimant to claim and efficient for the Department to administer. 28 46. ecdp members are naturally supportive of a move towards making the entire process from application to review easier to navigate and therefore generally more accessible. 47. Specifically, the recognition that the DLA claim form is too long and complicated and the assurance that DWP will work actively to design an improved form that is understandable and as straightforward as possible29 are positive steps towards addressing issues that many members raised with respect to written communication. 48. Members agreed that forms were often too complex and there was a feeling that a number of the questions asked were unnecessary as they had previously shared this information. Every time you [update you] get more and more, it gets thicker and thicker.30 49. Not only is a complex form an initial barrier for applicants but the strict expectation on style of response can create unnecessary stress for the applicant, and unnecessary admin for DWP. Indeed, a number of disabled people who contributed to this work had been rejected when applying for the first time, simply because it was not clear what information they should be providing, or how it should be presented. When they received guidance from a
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professional or advocate who could advise on the correct presentation of the same information, their claim had been successful: I had to appeal because I did not put it in a way that the DWP wanted.31 [I]t took years of practice until we worked out how, in my case, to explain my situation in terms Decision Makers could understand.32 50. It is important to note that overly complex information is not just a barrier to those with impairments that affect the way they communicate or understand information, but to all individuals. Indeed, 20.5% of survey respondents said that the current system was not accessible to them. This issue was also emphasised above all others relating to communication by ecdps PIP reference group. I found and find the current application system extremely complicated and extremely inefficient.33 51. Therefore, as DWP look to do further work on setting up multiple channels through which disabled people and their carers will be able to access Personal Independence Payment information34 due consideration needs to be given to the availability of the information needed at every stage of the process in a variety of formats. Attention to the individuals preference in terms of format early on in the process could easily address some of the difficulties members had experienced. Have as many formats as possible; text in various sizes, Braille, British Sign Language Also helplines and internet.35 52. The creation of an online claim facility in addition to the paper claim form36 would certainly open up access options for the many disabled people who use digital technology to meet their access needs in a way that more traditional technologies do not. However, this should not be seen as a replacement for a variety of these more traditional formats given that overall, disabled people are less likely to use the internet due to a number of additional barriers they face including cost, and indeed, accessibility.37
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ecdp DLA/PIP survey respondent ecdp DLA/PIP survey respondent 33 ecdp DLA/PIP survey respondent 34 PIP policy briefing note: Delivery the operational approach (point 17) 35 ecdp DLA/PIP survey respondent 36 Ibid 37 PIP briefing notes and draft assessment inclusion andecdp comments Office for Disability Issues: Digital regulations: disabled people Page 19 of 29

[Information should be available] online but also in an easily accessible paper format, without the third degree to get it.38 53. Where information is provided online, it would be useful to have some thought around ensuring this is accessible, in the widest sense, and easy to navigate. This had not been the experience of all members: Make it less difficult to find [information] through their own website it takes a lot of searching and their sites are not the most user-friendly.39 54. It was also suggested that making supporting information available in a wider range of places that disabled people regularly access or that are open to the community such as disabled peoples user-led organisations, support groups, libraries, doctors surgeries could make accessing support throughout the process more accessible, especially during the transition period. However, some also felt that of these, it would be best to make use of those areas where an appointed individual could support or answer any questions. [Information should be available through] the web, job centre, doctors, health centres, CAB, ecdp.40 55. Interestingly, many members of the group had accessed support from impairment specific disabled peoples organisations, often because they catered for their specific communication requirements, for example British Sign Language. This reinforces the need for peoples access needs to be met by the Department itself, so that they do not have to seek this extra, external support. 56. One member was very clear that advocate support had enabled her to successfully challenge a decision to lower her rate of DLA as she became independent. While hoping to see this support available in the new system, she also felt it was important to ensure that this did not compromise peoples right to a confidential assessment. Interestingly, 61.8% survey respondents would want to have an advocate involved in their assessment. Face-to-face communication 57. The opportunity to communicate face-to-face with advisors and assessors was
http://odi.dwp.gov.uk/odi-projects/digital-inclusion.php ecdp DLA/PIP survey respondent 39 ecdp DLA/PIP survey respondent 40 PIP briefing notessurvey respondent ecdp DLA/PIP and draft assessment regulations: ecdp comments
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largely welcomed by members, especially given that some preferred not to use written communication: Face-to-face assessment is beneficial for those who find it difficult to fill in forms.41 58. 28.9% of survey respondents had accessed initial information about DLA through face-to-face communications, and 41.2% had face-to-face consultations as part of their assessment. 59. While welcoming an in-person approach, members were keen to stress that this should not necessarily be a medical examination and some members were worried that face-to-face meetings can lead them to feel out of control. Care would need to be taken to ensure this process was user centred, like support planning42. 60. As previously mentioned, some members had very negative experiences of not being listened to, some of which had resulted in incorrect decisions about their DLA award. With a move towards a largely in-person approach to assessment, this must be addressed to ensure that people are given adequate time to think about what information they need to share, to explain this in their own words, and feel that this is being accurately recorded: I valued having time to think about my responses, especially as my condition fluctuates.43 Notifications 61. Members of the group felt that regular notifications, both throughout the initial application process and if any changes were to take place thereafter, would be useful: DWP should keep you updated with the changes as and when they happen.44 62. They also reported feeling that after sending information there was a long wait before any update was received. Therefore we welcome the move towards
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improved notifications45.

PIP briefing notes and draft assessment regulations: approach (point 16) PIP policy briefing note: Delivery the operational ecdp comments
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5. PIP Assessment Criteria

63. As stated in the introduction, our comments focus particularly on the policy briefing documents and the establishment of Personal Independence Payment. Many other organisations have focused on the particular criteria that form the assessment. As such, we do not wish to comment further on the specific tests, but on the wider issues which the Initial Draft of Assessment Criteria document highlights. 64. It is reassuring to note that DWP are keen to discuss the draft assessment criteria with disabled people and their organisations46, in line with the goal of involving disabled people, as discussed above. 65. Three positive elements raised in the draft assessment criteria technical note are particularly worth noting: Reflecting the Lived Experience of Disabled People 66. The first is that DWP has sought to develop an assessment which considers and reflects a broader range of impairment types than Disability Living Allowance.47 67. It is essential that PIP and the way it is administrated reflect all disabled people eligible to claim and takes account of the different barriers individuals might face as a result of these. Furthermore, as with the 12 month period condition, it makes sense to align this with the definition of disability used in the Equality Act 2010. 68. It should be noted that there has been a great deal of concern expressed nationally, and by our members around how this will work in practice within the context of budget restrictions. 69. It has been noted many times during the progression of the Welfare Reform Bill that the number of disabled people claiming DLA has risen steeply in recent years: It is important to bear in mind that in just eight years, the number of
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people claiming Disability Living Allowance has risen from 2.5million to 3.2million an increase of around 30 per cent.48 70. Of course it is not possible to definitely identify the exact causes for the rise in claimants; however some obvious factors include the growth of general population and more specifically a population that is getting older. 71. Furthermore, other factors for growth are reflected in the DWPs analysis in the growth of the DLA caseload49. While DLA is only available to those under 65, if you are already a DLA recipient upon turning 65 you can continue to claim, whereas new applicants of the same age would qualify for the equivalent benefit, Attendance Allowance. This means that since 1992, the number of claimants over 65 will naturally have grown as recipients have reached this threshold and continued to use DLA. 72. A further, clearly related, factor is the positive steps taken in law (Disability Discrimination Act 1995, 2005 and Equality Act 2010), and more generally to recognise a range of conditions within the definition of disability, including long term health conditions. Whilst incorporating these into the PIP assessment criteria is unquestionably the right way to address this, doing so will rightly mean a rise in the number of individuals entitled to claim. Due consideration needs to be given to how these people will then be supported by the PIP benefit. Social Model Approach 73. The second positive element is a step away from a medical model approach to assessment and towards one which looks at the barriers an individual may face in participating: Developing criteria which are not based on the type of impairment individuals have but how these affect their everyday lives Creating a more active enabling benefit which considers what an individual can do rather than what they cannot.50 74. However, a key concern arises from this point. The focus on what an individual can do is naturally one that should underpin a modern disability benefit which
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PIP policy briefing note: Introduction (point 18) http://statistics.dwp.gov.uk/asd/asd1/adhoc_analysis/2011/DLA_Growth_in_Caseload_FIN AL.pdf (July 2011) 50 PIP briefing notesof assessment criteria technical note (point 4.2) PIP initial draft and draft assessment regulations: ecdp comments Page 24 of 29

reflects the contribution disabled can and do make with the correct support. 75. DLA is for many of ecdps members, and disabled people more widely central to this correct support in that it meets the extra costs disabled people face, however independent. 76. In the draft assessment criteria it is noted that: 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.51 77. In ecdps response to the Government consultation on the reform of Disability Living Allowance we raised a concern that by focusing PIP on people with the highest needs, the reform risks turning what was DLA into a health and care budget by proxy, rather than focusing on those people with the highest costs. As such, it is positive to see that PIP, like its predecessor, aims to meet the extra costs disabled people face. 78. Our concern is that while cost is viewed as directly related to need when evidence suggests there is in fact no correlation52 and therefore the assessment only examines need as a way of measuring both (using proxies for the impact of a health condition or impairment including costs arising from disability53) those with extra costs will not be supported by PIP in the way the above statement suggests that the should be. 79. This scenario has led members to worry that they will be penalised for a higher level of independence. If one can complete the tasks the assessment requires them to fully or without support, it is still quite possible that they could face extra cost in doing so. Currently, this would not be reflected in the proposed assessment. Choice and Control 80. Finally, the third favourable element is an aim: to ensure that disabled people have the same choices as non-disabled
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people.54 81. We know that DLA has enabled thousands of disabled people to overcome additional barriers by providing for the cost of overcoming them. Through earlier work with members a very clear outcome of this is equal participation, including in the workplace. Though DLA has never been an out-of-work benefit, it does provide a platform for disabled people to get on in the workplace and prevent people from requiring more support later on: Without my DLA I would lose my adapted car, my independence and my job. DLA supports me to contribute because it enables me to work full time.55 82. It is no less than essential that PIP continues this progress, and it is only through maintaining provision for cost that this will be the case. Holistic Assessment 83. With these three points in mind, the assessment method and criteria need to reflect the governments aims to include a broader range of disabled people both in terms of impairment and social situation and to offer them the same choice and control as non-disabled people. 84. The PIP reference group, and ecdps wider membership, is formed of a diverse range of individuals, with a range of lived experience. Some older members had been claiming DLA for many years, where younger members of the group had only recently applied. Given this, and that the group represented individuals with mental health conditions, physical and sensory impairments, learning disabilities, long term health conditions and those with multiple or fluctuating impairments, it was unsurprising that they had used their DLA to address different costs incurred by the different barriers they faced. 85. The everydayness of the ways DLA had supported people was striking, for example, with the cost of eating a special diet required by a medical condition or the cost of heating a house. As well as these essentials, members had used DLA to enjoy a social life and referenced the discount that they had been given on football or theatre tickets, as part of offers given specifically to DLA recipients. The importance of being able to access the same activities as non54 55

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disabled peers was emphasised. 86. A key concern for members, therefore, is how an assessment would take account of the ways DLA supports people to access these every day activities and the important role that they play in peoples lives, while also considering the extra costs of doing them. 87. While welcoming an assessment which focuses on what people can do in their everyday lives and not on their impairment in a medical context, the rigidity of the questions was felt not to leave an opportunity to convey any more than the things people can get by doing. 88. Bearing in mind the varying ways people have used their DLA in their everyday lives, it was not felt that an assessment which talks only about ability (however positive) would adequately account for the other things which were important in an individuals life. For example, when looking at the food and drink test, it appeared to members that being able to prepare a microwave meal was seen as adequate, regardless of whether that was all the applicant would want to eat: Do we not have the right to choose what food we like to eat?56 89. Related to this is the use of a medical assessment, which was not considered to give an insight into the individuals impairment. 59.5% survey respondents felt that a medical assessment would not be useful to the assessor when trying to gain an insight into the day-to-day reality of the individuals impairment. A further 21.6% were unsure if a medical assessment would be useful to an assessor. 90. Further clarity around the ways an individual will be able to explain to the assessor more than how their impairment affects their ability to perform daily tasks, but how they wish to live their every day life too. 91. Members questioned why the PIP assessment could not be linked to the others that they had undergone, where a much more holistic approach had been taken. A good example of this was the support plan in a social care setting written to demonstrate how a Personal Budget will meet the recipients needs. As well as cutting down on the number of assessments that need to be undertaken, members suggested that this would enable the assessor to understand the individuals wider needs and abilities.
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PIP Assessment Process 92. The group considered that there was a significant lack of transparency surrounding the assessment. The specific issues within this include the assessment process, and the person carrying it out. Members felt that the process for the assessment itself was unclear and that they should be made aware of the more specific details around how the assessment would work in practice. For example, it was felt that the number of points allocated to each of the criteria should be made available. Additionally it was thought that it would be useful to give the disabled person an opportunity to view the questions in advance to allow them to think about answers that would accurately reflect their situation: The client should have the opportunity to read the questions beforehand. This would hopefully mean that the assessor will get an answer which reflects the need.57 95. Members of the group felt that this would be an excellent opportunity to tap into the expertise of disabled people, who they felt would be able to work very well as assessors, contribute their lived experience to how the assessments were run and how the assessors were trained. Comments submitted by ecdp to DWP, August 2011. For further information on any element of this document please contact Faye Savage (Lived Experience Officer, ecdp) on fsavage@ecdp.org.uk or 01245 392300.

93.

94.

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Appendix About ecdp

ecdp is an organisation run by and for disabled and older people. Established in 1995 our origins are firmly rooted in a belief that the voice of disabled and older people, both as individuals and collectively, is vital if the lives of disabled and older people are to be enhanced. Our vision is to enhance the everyday lives of disabled and older people in Essex and beyond. We do this by: Actively involving and engaging with disabled and older people Delivering a range of high quality services, projects and programmes Working in partnership with a range of stakeholders in the public, private and voluntary sectors Shaping and influencing strategy, policy and practice Creating a professional, effective and efficient organisation that can and does deliver. We provide a wide range of support, information, advice and guidance services, primarily in the field of social care. We currently58 provide Direct Payment / Personal Budget support services to approximately 3,900 clients in 3 services across 4 local authority areas. We are also closely involved in the design and delivery of the Right to Control Trailblazer in Essex. As an organisation we have 43 staff, approx 1.7m turnover, nearly 190 volunteers and approximately 1,700 members of all ages and impairment groups.

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