ecdp Comments -- PIP Briefing Notes and Draft Assessment Regs, August 2011

8/4/2019 ecdp Comments -- PIP Briefing Notes and Draft Assessment Regs, August 2011

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PIP briefing notes and draftassessment regulations

ecdp commentsAugust 2011


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PIP briefing notes and draft assessment regulations: ecdp comments

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Contents

Executive Summary ............................................................................................4PIP briefing notes and draft assessment regulations: ecdp comments ...............21. Introduction ......................................................................................................8

Structure of this response ................................................................................8First meeting of our PIP reference group .........................................................8Second meeting of our PIP reference group ....................................................8

2. Involving Disabled People .............................................................................103. Claim Journey ................................................................................................12

Required Period Condition .............................................................................12Application and Assessments .........................................................................13Review ............................................................................................................15Appeals ..........................................................................................................16

4. Communication ..............................................................................................18Office for Disability Issues: Digital inclusion and disabled people .................19

Face-to-face communication .........................................................................20Notifications ....................................................................................................21

5. PIP Assessment Criteria ................................................................................23

Reflecting the Lived Experience of Disabled People ......................................23Social Model Approach ...................................................................................24Choice and Control ........................................................................................25Holistic Assessment ......................................................................................26PIP Assessment Process ...............................................................................28

Appendix About ecdp ......................................................................................29

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Executive SummaryE1. This is ecdps response to the initial draft assessment criteria for Personal

Independence Payment (PIP) and the accompanying policy briefing notespublished by Department for Work and Pensions (DWP) in May 2011. Thisresponse 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 allimpairments, 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 willwork with disabled people, their organisations and carers in reforming DisabilityLiving Allowance (DLA).

E5. Concerns were raised around the potential impact of changes for those alreadyusing DLA. Even if existing users will continue to receive support through thePIP benefit, it was felt that the process of reassessment needed to be madeclearer.

E6. As well as meaningful consultation while developing and implementing the PIPbenefit, members also emphasised the importance of disabled people beingcentral to their own claim journey. Some felt that a system of self-assessmentwould 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 toclaim PIP with the legal definition of disability (as per the Equality Act 2010)broadly favourable. However, while the twelve month total of the qualifyingperiod and the prospective test seems sensible, we would suggest that thisdoes not necessarily need to be set at six months for each, especially in caseswhere 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 ofclaimants and their different impairments.

E10. Given the move away from indefinite life-long receipt of DLA and towardsfixed-term PIP awards, we feel it is essential that review periods areproportionate to likelihood of change in the individuals impairment or lifestyle.

E11. Members were supportive of an approach to review which reflected the natureof their impairment and the likelihood of change. It was hoped that this would

prevent the situation that some members had experienced where changes intheir DLA award did not properly reflect their situation and lengthyreassessment 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 byadequately 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 andappeals. In order to reinforce faith in the fairness of the system, it is importantthat the reconsideration process is also transparent.

E14. ecdp membersare 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 tothose 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 earlyon in the process could easily address some of the difficulties members hadexperienced.

E17. The creation of an online claim facility in addition to the paper claim form wouldopen 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 moretraditional formats.

E18. Making supporting information available in a wider range of places that disabledpeople regularly access or that are open to the community could make

accessing support throughout the process more accessible, especially duringthe transition period.

E19. The fact many members had accessed support from impairment-specific

disabled peoples organisations, often because they catered for specificcommunications requirements, reinforces the need for peoples access needs tobe 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 writtencommunication. However, concern was expressed by some that this could leadthe individual to feel that they were out of control, so care would need to betaken 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 beuseful. They welcomed the move towards improved notifications.

E22. It is reassuring to note that DWP are keen to discuss the draft assessmentcriteria with disabled people and their organisations, in line with the goal ofinvolving 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 andreflects a broader range of impairment types than Disability Living Allowance The step away from a medical model approach to assessment andtowards one which looks at the barriers an individual may face inparticipating

The aim to ensure that disabled people have the same choices as non-

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disabled people.

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1. Introduction

1. This is ecdps response to the initial draft assessment criteria for PersonalIndependence Payment (PIP) and the accompanying policy briefing notespublished by Department for Work and Pensions (DWP) in May 20111.

2. 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 ofecdp members. In

order to gather this evidence, ecdp has established a PIP reference group,formed of members with different experiences of both impairment and ofclaiming 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 structureddiscussion around the key issues raised.

5. 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 inorder 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 DWP Policy: PIP briefing notes and draft assessment regulations:http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/2

ecdp PIP briefing note and draft assessment regulationshttp://www.ecdp.org.uk/home/2011/6/8/pip-briefing-notes-and-draft-assessment-regulations-ecdp-com.html3 Ibid

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http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/http://www.ecdp.org.uk/home/2011/6/8/pip-briefing-notes-and-draft-assessment-regulations-ecdp-com.htmlhttp://www.ecdp.org.uk/home/2011/6/8/pip-briefing-notes-and-draft-assessment-regulations-ecdp-com.htmlhttp://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/http://www.ecdp.org.uk/home/2011/6/8/pip-briefing-notes-and-draft-assessment-regulations-ecdp-com.htmlhttp://www.ecdp.org.uk/home/2011/6/8/pip-briefing-notes-and-draft-assessment-regulations-ecdp-com.html


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6. The issues surrounding the proposed assessment criteria were discussed in asecond meeting of the PIP reference group. However, rather than focus onspecific tests or activities, the discussion centred around three more generalkey questions:

How does your impairment affect your day to day life, in terms of need andcost?

How has DLA and how could PIP mitigate these affects?

How could someone else for example, a DWP assessor best understandthe above?

7. 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 inadding their contribution to the previous work of the PIP reference group.

8. 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 isstructured around these key issues, rather than the policy documentsindividually. Where they directly relate to points in the policy briefing documentsthese are appropriately referenced in the footnotes.

9. Note: where comments focus on peoples past experiences of the existingbenefit system, we refer to DLA, and where looking towards the new system,we refer to PIP.

4 Ibid

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2. Involving Disabled People

10. Members of the ecdp PIP reference group had a number of positive commentsand constructive recommendations about how PIP can best work, based ontheir own lived experience. However, there was naturally a great deal ofconcern about how changes to a benefit which has supported many membersof the group to live independently and contribute meaningfully to society mightaffect their ability to continue doing so. A previous survey carried out by ecdpfound 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 theassurance that DWP will work with disabled people, their organisations andcarers to ensure that the claiming process will be clear and easy to understandand navigate5. Some specific information about how this will work in practicewould be useful.

12. Concerns were raised by the group that special attention needs to be paid tothe potential impact of changes for those already using DLA. Even if existingusers will continue to receive support through the PIP benefit, it was felt that theprocess of reassessment needed to be made clearer:

I can foresee a situation where people who are used to receiving DLA aregoing 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 thetransition to PIP was a smooth one:

[DWP is] just one organisation set in part of the country. ULOs should beinvolved, 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 beingcentral to their own claim journey:

5 PIP Policy briefing note: Delivery the operational approach (point 1)6ecdp PIP reference group member7ecdp PIP reference group member

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

8ecdp PIP reference group member

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training. 86.5% would like the assessor to have specific knowledge about theimpairment of the individual.

27. Some concern was raised around how assessors working within an objectivesystem will also adequately take account of the different life circumstances ofclaimants and their different impairments. Further expansion on how this wouldbe 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% respondentswanted 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 orconsultant for the long term management of their impairment, differentprofessionals such as social workers or carers were their preferred expert.

Social services [should be involved] as they did an assessment of mycare 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 theirown support. Indeed, evidence suggests that self-assessment within social careleads to both better outcomes for service users19 and better use of publicresource20.

31. It was felt that this style of assessment, not only more person-centered butmore flexible in its methods, gave a more accurate impression of the disabledperson as a while. For example, some reported not being able to paint a truepicture of how their impairment affects them in the short time available:

An assessment of blindness cannot be made in a forty minuteappointment. A day is needed to show how blindness affects everyday

17ecdp DLA/PIP survey respondent18ecdp DLA/PIP survey respondent19

Personalisation: A Rough Guide fro4m SCIE, available here:http://www.scie.org.uk/publications/reports/report20.asp20 Personalisation, Productivity and Efficiency, from SCIE, available here:http://www.scie.org.uk/publications/reports/report37.pdf

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life.21

32. As part of this wider view of the disabled persons life, some members wouldlike 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 myevidence, because my medical condition means that spontaneous verbalevidence 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 thatthey should be made aware of the more specific details around how theassessment would work in practice. For example, it was felt that the number ofpoints 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 anopportunity 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 whichreflects 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 tolikelihood of change in the individuals impairment or condition. Thisproportionate approach would support the Departments aim for efficiency andalso prevent claimants having to give information more often than is useful tothe successful management of their case.

37. Our members were supportive of an approach to review which reflected thenature of their impairment and the likelihood of change. It was hoped that thiswould prevent the situation that some members had experienced where

21ecdp DLA/PIP survey respondent22ecdp DLA/PIP survey respondent23ecdp PIP reference group member

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changes in their DLA award did not properly reflect their situation and lengthyreassessment 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 adecision about their DLA award. This is similar to the existing appeals figuresfor 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 shewasnt listened to during her initial assessment meeting. She felt appeals couldbe prevented by simply supporting you properly and meeting claimantscommunication 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 hadappealed three times before successfully claiming DLA, felt that it was possiblethe doctor who he met with during one of the unsuccessful applications did notunderstand him. He and other members had accessed external support beforetheir claims had been upheld. Obviously this would put those without access toadditional 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

24 ecdp DLA/PIP survey respondent25 PIP Policy briefing note: Delivery the operational approach (point 16)26ecdp DLA/PIP survey respondent

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claimant, so the claimant knows where they stand.27

27ecdp DLA/PIP survey respondent

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4. Communication

44. Throughout this report we have touched on the importance of efficientcommunication, an issue raised repeatedly during our consultation withmembers. As such, this section is devoted to how written and verbalcommunication between the disabled person and the Department can workmost successfully throughout. We also touch upon impairment related accessissues.

45. The policy briefing note Delivery the operational approach, states that DWP:

want to ensure that Personal Independence Payment will be simple forthe claimant to claim and efficient for the Department to administer. 28

46. ecdp membersare naturally supportive of a move towards making the entire

process from application to review easier to navigate and thereforegenerally 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 animproved form that is understandable and as straightforward as possible29 arepositive steps towards addressing issues that many members raised withrespect to written communication.

48. Members agreed that forms were often too complex and there was a feelingthat a number of the questions asked were unnecessary as they had previouslyshared this information.

Every time you [update you] get more and more, it gets thicker andthicker.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 theapplicant, and unnecessary admin for DWP. Indeed, a number of disabledpeople who contributed to this work had been rejected when applying for thefirst time, simply because it was not clear what information they should beproviding, or how it should be presented. When they received guidance from a28 PIP Policy briefing note: Delivery the operational approach (point 1)29 PIP Policy briefing note: Delivery the operational approach (point 18)30ecdp PIP reference group member

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professional or advocate who could advise on the correct presentation of thesame 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 explainmy situation in terms Decision Makers could understand.32

50. It is important to note that overly complex information is not just a barrier tothose with impairments that affect the way they communicate or understandinformation, but to all individuals. Indeed, 20.5% of survey respondents said that

the current system was not accessible to them. This issue was also emphasisedabove all others relating to communication by ecdps PIP reference group.

I found and find the current application system extremely complicated andextremely 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 PersonalIndependence Payment information34 due consideration needs to be given to

the availability of the information needed at every stage of the process in avariety of formats. Attention to the individuals preference in terms of formatearly on in the process could easily address some of the difficulties membershad experienced.

Have as many formats as possible; text in various sizes, Braille, BritishSign 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 usedigital technology to meet their access needs in a way that more traditionaltechnologies do not. However, this should not be seen as a replacement for avariety of these more traditional formats given that overall, disabled people areless likely to use the internet due to a number of additional barriers they faceincluding cost, and indeed, accessibility.37

31ecdp DLA/PIP survey respondent32ecdp DLA/PIP survey respondent33ecdp DLA/PIP survey respondent34 PIP policy briefing note: Delivery the operational approach (point 17)35ecdp DLA/PIP survey respondent36 Ibid37

Office for Disability Issues: Digital inclusion and disabled people

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[Information should be available] online but also in an easily accessiblepaper format, without the third degree to get it.38

53. Where information is provided online, it would be useful to have some thoughtaround 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 takesa 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 widerrange of places that disabled people regularly access or that are open to thecommunity such as disabled peoples user-led organisations, support groups,libraries, doctors surgeries could make accessing support throughout theprocess more accessible, especially during the transition period. However,some also felt that of these, it would be best to make use of those areas wherean 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 cateredfor their specific communication requirements, for example British SignLanguage. This reinforces the need for peoples access needs to be met by theDepartment 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 becameindependent. While hoping to see this support available in the new system, shealso felt it was important to ensure that this did not compromise peoples right toa confidential assessment. Interestingly, 61.8% survey respondents would wantto 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.php38ecdp DLA/PIP survey respondent39ecdp DLA/PIP survey respondent40ecdp DLA/PIP survey respondent

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largely welcomed by members, especially given that some preferred not to usewritten communication:

Face-to-face assessment is beneficial for those who find it difficult to fill informs.41

58. 28.9% of survey respondents had accessed initial information about DLAthrough face-to-face communications, and 41.2% had face-to-face consultationsas 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 wereworried that face-to-face meetings can lead them to feel out of control. Carewould need to be taken to ensure this process was user centred, like supportplanning42.

60. As previously mentioned, some members had very negative experiences of notbeing listened to, some of which had resulted in incorrect decisions about theirDLA 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 mycondition 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 beuseful:

DWP should keep you updated with the changes as and when theyhappen.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

41ecdp PIP reference group member42ecdp PIP reference group member43ecdp PIP reference group member44ecdp PIP reference group member

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improved notifications45.

45 PIP policy briefing note: Delivery the operational approach (point 16)

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5. PIP Assessment Criteria

63. As stated in the introduction, our comments focus particularly on the policybriefing documents and the establishment of Personal Independence Payment.Many other organisations have focused on the particular criteria that form theassessment. 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 documenthighlights.

64. It is reassuring to note that DWP are keen to discuss the draft assessmentcriteria with disabled people and their organisations46, in line with the goal ofinvolving disabled people, as discussed above.

65. Three positive elements raised in the draft assessment criteria technical noteare 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 broaderrange of impairment types than Disability Living Allowance.47

67. It is essential that PIP and the way it is administrated reflect all disabled peopleeligible to claim and takes account of the different barriers individuals might faceas a result of these. Furthermore, as with the 12 month period condition, itmakes sense to align this with the definition of disability used in the Equality Act2010.

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 thecontext 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 recentyears:

It is important to bear in mind that in just eight years, the number of46 PIP initial draft of assessment criteria technical note (point 1.6)47 PIP initial draft of assessment criteria technical note (point 1.4)

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people claiming Disability Living Allowance has risen from 2.5million to3.2million an increase of around 30 per cent.48

70. Of course it is not possible to definitely identify the exact causes for the rise inclaimants; however some obvious factors include the growth of generalpopulation 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, ifyou 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 ofclaimants over 65 will naturally have grown as recipients have reached thisthreshold and continued to use DLA.

72. A further, clearly related, factor is the positive steps taken in law (DisabilityDiscrimination Act 1995, 2005 and Equality Act 2010), and more generally torecognise a range of conditions within the definition of disability, including longterm health conditions. Whilst incorporating these into the PIP assessmentcriteria is unquestionably the right way to address this, doing so will rightly

mean a rise in the number of individuals entitled to claim. Due considerationneeds to be given to how these people will then be supported by the PIPbenefit.

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 facein participating:

Developing criteria which are not based on the type of impairmentindividuals have but how these affect their everyday lives Creating amore active enabling benefit which considers what an individual can dorather than what they cannot.50

74. However, a key concern arises from this point. The focus on what an individualcan do is naturally one that should underpin a modern disability benefit which

48

PIP policy briefing note: Introduction (point 18)49http://statistics.dwp.gov.uk/asd/asd1/adhoc_analysis/2011/DLA_Growth_in_Caseload_FINAL.pdf(July 2011)50 PIP initial draft of assessment criteria technical note (point 4.2)

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reflects the contribution disabled can and do make with the correct support.

75. DLA is for many ofecdps members, and disabled people more widely central to this correct support in that it meets the extra costs disabled peopleface, however independent.

76. In the draft assessment criteria it is noted that:

Personal Independence Payment, like Disability Living Allowance, willprovide a cash contribution towards the additional costs faced by disabledpeople 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 thehighest needs, the reform risks turning what was DLA into a health and carebudget 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 theextra 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 theassessment only examines need as a way of measuring both (using proxies forthe impact of a health condition or impairment including costs arising fromdisability53) those with extra costs will not be supported by PIP in the way theabove 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 extracost in doing so. Currently, this would not be reflected in the proposedassessment.

Choice and Control

80. Finally, the third favourable element is an aim:

to ensure that disabled people have the same choices as non-disabled

51 PIP initial draft of assessment criteria technical note (point 4.3)52 Counting the Cost, Demos: http://www.demos.co.uk/publications/countingthecost53 PIP initial draft of assessment criteria technical note (point 4.4)

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people.54

81. We know that DLA has enabled thousands of disabled people to overcomeadditional barriers by providing for the cost of overcoming them. Through earlierwork with members a very clear outcome of this is equal participation, includingin the workplace. Though DLA has never been an out-of-work benefit, it doesprovide a platform for disabled people to get on in the workplace and preventpeople from requiring more support later on:

Without my DLA I would lose my adapted car, my independence and myjob. 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 onlythrough 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 samechoice and control as non-disabled people.

84. The PIP reference group, and ecdps wider membership, is formed of a diverserange of individuals, with a range of lived experience. Some older members hadbeen claiming DLA for many years, where younger members of the group hadonly recently applied. Given this, and that the group represented individuals withmental health conditions, physical and sensory impairments, learningdisabilities, long term health conditions and those with multiple or fluctuating

impairments, it was unsurprising that they had used their DLA to addressdifferent 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 orthe cost of heating a house. As well as these essentials, members had usedDLA to enjoy a social life and referenced the discount that they had been givenon football or theatre tickets, as part of offers given specifically to DLArecipients. The importance of being able to access the same activities as non-

54 PIP initial draft of assessment criteria technical note (point 4.2)55 Results ofecdps DLA and ILF survey (July 2010):http://www.ecdp.org.uk/home/2010/7/23/results-of-ecdps-survey-on-dla-ilf.html

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PIP Assessment Process

92. The group considered that there was a significant lack of transparencysurrounding the assessment. The specific issues within this include theassessment process, and the person carrying it out.

93. Members felt that the process for the assessment itself was unclear and thatthey should be made aware of the more specific details around how theassessment would work in practice. For example, it was felt that the number ofpoints allocated to each of the criteria should be made available.

94. Additionally it was thought that it would be useful to give the disabled person anopportunity to view the questions in advance to allow them to think aboutanswers 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 whichreflects 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 wellas assessors, contribute their lived experience to how the assessments wererun and how the assessors were trained.

Comments submitted byecdp to DWP, August 2011. For further information onany element of this document please contact Faye Savage (Lived ExperienceOfficer, ecdp) on [email protected] 01245 392300.

57ecdp PIP reference group member

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Appendix About ecdp

ecdp is an organisation run by and for disabled and older people. Established in1995 our origins are firmly rooted in a belief that the voice of disabled and olderpeople, both as individuals and collectively, is vital if the lives of disabled andolder people are to be enhanced.

Our vision is to enhance the everyday lives of disabled and older people inEssex 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 andvoluntary sectors

Shaping and influencing strategy, policy and practice

Creating a professional, effective and efficient organisation that can anddoes 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 servicesacross 4 local authority areas. We are also closely involved in the design anddelivery of the Right to Control Trailblazer in Essex. As an organisation we have43 staff, approx 1.7m turnover, nearly 190 volunteers and approximately 1,700members of all ages and impairment groups.

ecdp Comments -- PIP Briefing Notes and Draft Assessment Regs, August 2011

Documents

Transcript of ecdp Comments -- PIP Briefing Notes and Draft Assessment Regs, August 2011