ecdp Comments - PIP Briefing Notes and Draft Assessment Regulations -- FINAL

8/6/2019 ecdp Comments - PIP Briefing Notes and Draft Assessment Regulations -- FINAL

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Personal IndependencePayment briefing notes and

draft assessment regulations

ecdp commentsJune 2011



PIP briefing notes and draft assessment regulations: ecdp comments

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Introduction

1. This is ecdp’s 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 2011.1

2. 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.

3. 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.

4. We provide a wide range of support, information, advice and guidance services,

primarily in the field of social care. We currently2 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 have

43 staff, approx £1.7m turnover, nearly 190 volunteers and approximately 1,700members of all ages and impairment groups.

Structure of this response

5. This response has been informed by the lived experience of ecdp members. Inorder 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). This group will continue meeting

1 http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/2 As of December 2010

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http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/personal-independence-payment-briefing/







throughout the summer in order to discuss and contribute to key developmentsin PIP.

6. Following the publication of the draft PIP assessment criteria and theaccompanying policy briefing notes, the PIP reference group held a structureddiscussion around the key issues raised.

7. This group looked at the DLA ‘journey’ from the perspective of the individual;how the initial information was acquired, the application and assessmentprocess, and the ways individuals have used DLA, where applicable3. Our aimwas 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 whichcould be improved when looking towards the new system.

8. The questions asked within this were drawn from key points within the policy

briefing documents.4 To avoid repetition this report is structured around thesekey issues, rather than the policy documents individually. Where they directlyrelate to points in the policy briefing documents, these are appropriatelyreferenced in the footnotes.

9. The draft assessment criteria are addressed separately at the end of this report.Within this section we do not discuss particular parts of the test, but focus onthe general issues around this practical element of the establishing of PIP.

10. Note: where comments focus on people’s past experiences of the existingbenefit system, we refer to “DLA”, and where looking towards the new system,we refer to “PIP”.

3 http://www.ecdp.org.uk/home/2011/6/6/pip-briefing-notes-and-draft-assessment-regulations-ecdp-com.html4 Ibid

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Involving Disabled People

11. 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 of concern 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.

12. ecdp and our members feel that it is essential that Personal IndependencePayment 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 navigate’5 and some specific information about how this will work in practicewould be useful.

13. 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 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 DLAare going to become unstuck because it’s not being explained very well.”6

14. Members felt that consultation with User Led Organisations, which in turn candiscuss key issues with their members, would support DWP to ensure thatdisabled 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

15. 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:

“Users should be involved throughout and once PIP is in place. People

5 PIP Policy briefing note: Delivery – the operational approach (point 1)6 ecdp PIP reference group member 7 ecdp PIP reference group member

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Claim Journey

Required Period Condition

17. As previously stated in ecdp’s response to the Government’s Disability Living

Allowance reform consultation, we find the alignment of the definition of thosewho are potentially eligible to claim PIP with the legal definition of disability (asper the Equality Act 2010) broadly favourable.11

18. However, the experience of DLA users we have consulted with suggests that

the ‘other financial and in-kind support mechanisms’12

available in the shorter term are not always easy to access immediately. This can leave people withoutthe required support. For example, one claimant had a contact who had

“…been left struggling financially and feeling very isolated as she couldnot leave her house without assistance.”13

19. 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 willdefinitely be long term, or indeed permanent.

Application and Assessments

20. This section focuses on how the process of acquiring DLA has worked for people previously, and how this can be built upon through PIP.

21. Specific points around communication, including the application form andassessment, are discussed specifically on page 8.

‘The new assessment to determine entitlement will be fairer, moretransparent and objective. It will provide individuals with the opportunity toexplain their individual circumstances and for independent assessors toclarify points with them.’14

22. In terms of involving disabled people – as discussed above – some clarity

11 DLA reform consultation: ecdp response (point 15)12 PIP Policy briefing note: Required period condition (point 1)13 ecdp PIP reference group member 14 PIP Policy briefing note: Delivery – the operational approach (point 2)

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29. Another member, who had appealed three times before successfully claimingDLA felt that it was possible the ‘doctor’ who he met with during one of theunsuccessful applications did not understand him. He and other members hadaccessed external support before their claims had been upheld, which shouldnot be the case, especially given that not all individuals have access to thissupport, potentially putting them at a disadvantage in the system.

30. ecdp therefore support the move towards ensuring that initial assessment is

‘transparent and objective’ with the view to reducing ‘unnecessary disputes andappeals’15. However, in order to reinforce faith in the fairness of the system, it isimportant that the ‘reconsideration process’ is also transparent.

15 PIP Policy briefing note: Delivery – the operational approach (point 16)

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Communication

31. 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.

32. 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. 16’

33. ecdp members are naturally supportive of a move towards making the entire

process – from application to review – easier to navigate and thereforegenerally more accessible.

34. 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 possible’17 arepositive steps towards addressing issues that many members raised withrespect to written communication.

35. For example, members agreed that forms were often too complex and therewas a feeling that a number of the questions asked were unnecessary as theyhad previously shared this information.

“Every time you [update you] get more and more, it gets thicker andthicker.”18

36. 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 understandinformation, but to all individuals. This was a key issue emphasised above allothers relating to communication by ecdp’s PIP reference group.

16 PIP Policy briefing note: Delivery – the operational approach (point 1)17 PIP Policy briefing note: Delivery – the operational approach (point 18)18 ecdp PIP reference group member

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37. Therefore, as DWP look to do further work on setting up ‘multiple channelsthrough which disabled people and their carers will be able to access PersonalIndependence Payment information…’19 due consideration needs to be given tothe availability of information in a variety of formats, and attention to theindividual’s preference in terms of format early on in the process could easilyaddress some of the difficulties members had experienced.

38. The creation of an online claim facility in addition to the paper claim form20

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 a

variety 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.21

39. 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 thecommunity – such as disabled people’s organisations, support groups, libraries,doctor’s surgeries – could make accessing support throughout the processmore accessible, especially during the transition period. However, it was also

felt that of these, it would be best to make use of those areas where anappointed individual could support or answer any questions.

40. Interestingly, many members of the group had accessed support from

impairment specific disabled people’s organisations, often because they cateredfor their specific communication requirements, for example British SignLanguage. This reinforces the need for people’s access needs to be met by thedepartment itself, so that they do not have to seek this extra, external support.

41. One member was very clear that advocate support had enabled her tosuccessfully 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 people’s right toa confidential assessment.

Face-to-face communication

19 PIP policy briefing note: Delivery – the operational approach (point 17)20 Ibid21

Office for Disability Issues: Digital inclusion and disabled people http://odi.dwp.gov.uk/odi-projects/digital-inclusion.php

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http://odi.dwp.gov.uk/odi-projects/digital-inclusion.php







42. The opportunity to communicate face-to-face with assessors was largelywelcomed by the group, especially given that some preferred not to use writtencommunication:

“face-to-face assessment is beneficial for those who find it difficult to fill informs.”22

43. Although 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 thisprocess was user centred, “like support planning”23.

44. As previously mentioned, some members had very negative experiences of “notbeing 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.

Notifications

45. Members of the group felt that regular notifications, both throughout the initialapplication process and if any changes were to take place thereafter, would be

useful:

“DWP should keep you updated with the changes as and when theyhappen.”24

46. They also reported feeling that after sending information there was a long waitbefore any update was received. Therefore we welcome the move towards‘improved notifications’25.

22 ecdp PIP reference group member 23 ecdp PIP reference group member 24 ecdp PIP reference group member 25 PIP policy briefing note: Delivery – the operational approach (point 16)

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Assessment Criteria

47. As stated above, our comments focus particularly on the policy briefingdocuments and the establishing of Personal Independence Payment. Manyother 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.

48. It is reassuring to note that DWP are keen to discuss the draft assessmentcriteria with disabled people and their organisations26, in line with the goal of involving disabled people, as discussed above.

49. Three positive elements raised in the draft assessment criteria technical noteare particularly worth noting:

50. The first is that DWP have ‘sought to develop an assessment which considers

and reflects a broader range of impairment types than Disability LivingAllowance.’27 It is essential that PIP and the way it is administrated reflect alldisabled people eligible to claim and takes account of the different barriersindividuals might face as a result of these. Furthermore, as with the 12 monthperiod condition, it makes sense to align this with the definition of disability usedin the Equality Act 2010.

51. However, there has been a great deal of concern expressed nationally, and byour members around how this will work in practice within the context of budgetrestrictions.

52. It has been noted many times during the progression of the Welfare Reform Billthat 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 of people claiming Disability Living Allowance has risen from 2.5million to3.2million – an increase of around 30 per cent.’28

53. Of course it is not possible to definitely identify the exact causes for this,

26 PIP initial draft of assessment criteria – technical note (point 1.6)27 PIP initial draft of assessment criteria – technical note (point 1.4)28 PIP policy briefing note: Introduction (point 18)

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however, one clear 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 rightlymean 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.

54. The second positive element is a step away from a ‘medical model’ approach toassessment and towards one which looks at the barriers an individual may face

in 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.’29

55. 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

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

56. DLA is – for many of ecdp’s members, and disabled people more widely –central to this correct support in that it meets the extra costs disabled peopleface, however independent.

57. 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 disabledpeople as a result of needs arising from a health condition or impairment.’30

58. In ecdp’s response to the Government consultation on the reform of Disability

Living Allowance we raised a concern that by focusing DLA on people with thehighest needs, the reform risks turning DLA into a health and care budget byproxy, rather than focusing on those people with the highest costs. As such, it ispositive to see that PIP, like its predecessor, aims to meet the extra costsdisabled people face.

29 PIP initial draft of assessment criteria – technical note (point 4.2)30 PIP initial draft of assessment criteria – technical note (point 4.3)

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59. Our concern is that while cost is viewed as directly related to need –when evidence suggests there is in fact no correlation31 – and therefore theassessment only examines need as a way of measuring both (using ‘proxies for the impact of a health condition or impairment including costs arising fromdisability’32) those with extra costs will not be supported by PIP in the way theabove statement suggests that the should be.

60. 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 requiresthem 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 proposedassessment.

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

‘to ensure that disabled people have the same choices as non-disabledpeople.’33

62. 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, 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 my job. DLA supports me to contribute because it enables me to work fulltime.”34

63. 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.

Comments submitted June 2011. For further information on any element of thisdocument please contact Faye Savage (Lived Experience Officer, ecdp ) [email protected] or 01245 392300.

31 Counting the Cost, Demos: http://www.demos.co.uk/publications/countingthecost32

PIP initial draft of assessment criteria – technical note (point 4.4)33 PIP initial draft of assessment criteria – technical note (point 4.2)34 Results of ecdp’s 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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http://www.ecdp.org.uk/home/2010/7/23/results-of-ecdps-survey-on-dla-ilf.html



mailto:[email protected]

http://www.demos.co.uk/publications/countingthecost


http://www.demos.co.uk/publications/countingthecost


mailto:[email protected]

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