Written evidence from Neil Carpenter (HAB0007)
Summary
My evidence concentrates on the assessment by the DWP of people with a learning disability. Using cases in which I have been involved as an advocate, it places particular emphasis on the contrast between decisions reached by the DWP and those of tribunals.
I work for Cornwall Advocacy as a volunteer advocate for people with a learning disability. The focus of my answers below is therefore on people with a learning disability and their experience of the DWP benefits system. I would, however, be surprised if many of my answers do not also describe the experience of other people on benefits.
It is worth emphasising that people with a learning disability are not a numerically small group in this country. Even if they were, their issues would of course need to be taken seriously; the fact of the matter, however, is that they form a numerically large group. In the UK, according to analysis by Mencap in 2021, there are approximately 1,130,000 adults with a learning disability. Huge numbers of them will have experiences of the benefits system similar to those described below.
All of the answers to specific questions in the Terms of Reference are written in a personal capacity.
Suitability of assessments
1 How could DWP improve the quality of assessments for health-related benefits?
Before looking at improvements that can be made to the quality of assessments, it is worth spelling out the obstacle course that currently faces someone with a learning disability. The stages the DWP creates are outlined from the point of view of Sarah when she applies to transfer from DLA to PIP.
It is important, though, to remember that many people like Sarah have no back-up from family or a support worker or an advocate. With support, she faces a protracted battle to get a decision in her favour; without it, she has no chance of coming through the process successfully.
Equally important is the fact that someone like her will also usually have major problems in reading and understanding as well as in oral communication, whether it be face-to-face or over the phone.
1 Sarah receives a letter from the DWP, asking her to ring for an application form. The letter may not be understood. If that is the case, the phone call to trigger the sending of the application form will not be made. As a result, she will not receive PIP.
2 If Sarah does initiate the phone call, she will then have to negotiate a number of options before a frequently long wait – over 40 minutes is not unusual - in a queue. The demands on her patience and on her skill in using the phone may mean that she aborts the call. If so, she will not receive PIP.
3 If Sarah does complete the phone call, a few days later she will receive the form itself. It is 33 pages long and difficult for her to understand. It is also unlikely that on her own she will complete it in a way which does justice to the problems she has in leading, to use the DWP’s own words, a ‘full, active and independent’ life. She will probably limit herself to the boxes that need to be ticked, without filling in the blank pages that would build up a fuller picture of what her life is like.
The covering letter which accompanies the form explains that if it is not returned by a specified date, normally one month from the date of the earlier phone call, ‘we may end your PIP claim’.
4 If Sarah has got this far, she will be notified of the date, time and place for her PIP assessment carried out by a health professional. Because the venue may be unfamiliar to her, she will probably need support to find the assessment location and for reassurance. As I have already said, that support – invaluable to check and often to counter the DWP version of the assessment - may not be available.
If she doesn’t attend her assessment, her PIP claim will usually be rejected.
5 If Sarah has attended her assessment, six to eight weeks later she should receive a decision letter based on the assessor’s report. If she doesn’t agree with the decision, she has the right to ask for Mandatory Reconsideration within one month of the date on the letter. She may not be able to handle the Mandatory Reconsideration paperwork. If that is the case, she will not receive PIP.
6 If Sarah does request Mandatory Reconsideration and is still not awarded PIP, she has the right to challenge the decision at a tribunal which is run independently of the DWP by HM Courts & Tribunals Service. In Cornwall a tribunal is held, like many across the country, in a magistrates’ court where she will normally face a panel of three people - a judge, a doctor and a disability/SEN specialist.
While in my experience the panel members do all they can to put someone like Sarah at her ease, the courtroom remains a daunting setting where, once again, support is essential for her.
The whole process – from the letter arriving until the outcome of the tribunal – can take between twelve and eighteen months. Those months, of course, are not just blank dates on a calendar: they are in most instances extended torment for people, many of whom, like Sarah, are particularly ill-equipped to deal with it.
In that context, there are several suggestions I can make to improve the quality of assessments for health-related benefits for people with a learning disability. In my comments, I have taken ‘assessments’ as referring not just to the assessment itself but also to the stages preceding it.
1 The nature of the DWP process has to change: it currently is an ‘obstacle course’, the effect of which is to make life more difficult for someone with a learning disability. For example, after receiving a letter from the DWP the initial hurdle that Sarah is required to clear is making a phone call to request an application form. There should be no letter with a request for a phone call as she is already on DWP records. The form should be sent directly to her.
2 To change that ‘obstacle course’, an overarching improvement that is needed is to make reasonable adjustments throughout the process. The government’s own website[1], before specifying how these adjustments should be implemented in health settings, makes this unequivocal statement: ‘Under the Equality Act 2010 public sector organisations have to make changes in their approach or provision to ensure that services are accessible to disabled people as well as everybody else.’
It continues: ‘All organisations that provide NHS or adult social care must follow the accessible information standard by law. The standard aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand with support so they can communicate effectively with health and social care services.’ If the provision of information that can be easily read and understood is deemed essential in health settings, why should the same provision not be a requirement for the DWP? Instead, in an area of his life which determines whether or not he lives in relative poverty, a man called Tony[2] who cannot read is sent a PIP application form that is 33 pages long.
The government website also states: ‘Public sector organisations shouldn’t simply wait and respond to difficulties as they emerge: the duty on them is anticipatory, meaning they have to think out what’s likely to be needed in advance.’ The PIP assessment of a man called Ben showed an obvious failure to anticipate the effect – in particular a build-up of pressure - that a wide range of sounds and lights would have on someone with autism.
3 The DWP should use the information that is already available to them. For many claimants their needs should be obvious from their records but their previous DLA awards - and school records in the case of a man called Jon – are often ignored. As a result, there is no continuity and no fairness in the way they are assessed.
4 The quality of assessors needs to be improved. The garbled language produced in some of their reports is one issue - for example, the following sentence in Ben’s PIP decision letter, ‘You were able to hear the assessor’s questions at a conversational tone …’ A similar problem, one of many, was picked out in the tribunal submission of a woman called Denise. The Consultation Report Form on her ability to make ‘budgeting decisions’ included the following ‘sentence’: ‘Has her own bank account and struggles to understand and this gets her stressed, and has debits, and is trying to pay these of (sic), have an arrangement with the council to pack off backdated monies.’
We explained that we would have answered the point made in ‘ … have an arrangement with the council to pack off backdated monies’ – but we could not understand it. Fortunately, the tribunal appeal panel recognised the point we were making. Otherwise, we would have remained in a Kafkaesque world where - because the ‘evidence’ supporting the DWP decision was incomprehensible – we were unable to challenge the decision itself.
As well as producing such incomprehensible justifications of their decisions, in one other key respect they can fall a long way short of the standard described in government information[3]: ‘Health Professionals conducting the assessments are experts in disability analysis, focusing on the effects of health conditions and disability on the individual’s daily life’. One question from the ‘Health Professional’ at the assessment of Thomas, a man with Down’s syndrome, is enough to demolish that ‘expert’ status. His parents were asked of his condition: ‘When did he catch it?’ The crassness of the question would be laughable if it were not so serious.
7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?
I have given above under question 1 my analysis of what needs to change in the DWP process. Obviously, I will not repeat the points but the two tables below illustrate the scale of the difference between DWP decisions and those at the tribunal stage[4] in cases brought by people with a learning disability.
The figure in your question of ‘up to 76% of tribunals’ finding ‘in favour of the claimant’ is, of course, for appeals in general. The data for people with a learning disability appealing against a PIP decision show an even higher success rate.
Table 1: Success Rate of Appeals against PIP Decisions[5] for People with a Learning Disability[6]
Year of Initial Decision[7] | PIP Initial Decisions | Initial Disallowance Decision Overturned at Appeal | Initial Disallowance Decision Upheld at Appeal | % of PIP Initial Decisions Overturned at Appeal |
2014 | 5,560[8] | 50 | 20 | 71.43 |
2015 | 13,360 | 180 | 60 | 75.00 |
2016 | 38,520 | 590 | 120 | 83.10 |
2017 | 42,730 | 730 | 120 | 85.88 |
2018 | 33,560 | 510 | 60 | 89.47 |
2019 | 31,640 | 300 | 30 | 90.91 |
2020[9] | 14,670 | 80 | 10 | 88.89 |
All of these bare statistics for Great Britain, however, can be fleshed out by data on the cases I have helped with.
Table 2: Points Awarded at Each Stage of the PIP Application Process
Date of Decision at Tribunal Stage | Name | Points Awarded after Assessment | Points Awarded after Mandatory Reconsideration | Points Awarded at the Tribunal Stage |
4.19 | Tony | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 24 Mobility: 11 Outcome: Daily Living - enhanced; Mobility – standard.[10] |
9.19 | Danny | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 6 Mobility: 0 Outcome: no award. | Daily Living: 15 Mobility: 10 Outcome: Daily Living - enhanced; Mobility – standard. |
6.20 | Denise | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 11 Mobility: 10 Outcome: Daily Living - standard; Mobility – standard. |
6.20 | Jon | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 14 Mobility: 10 Outcome: Daily Living - enhanced; Mobility – standard |
12.19 | Jenny | Daily Living: 0 Mobility: 0 Outcome: no award.
| Daily Living: 0 Mobility: 0 Outcome: no award.
| Daily Living: 12 Mobility: 0 Outcome: Daily Living - enhanced. |
2.20 | Martin | Daily Living: 0 Mobility: 0 Outcome: no award.
| Daily Living: 0 Mobility: 0 Outcome: no award.
| Daily Living: 10 Mobility: 10 Outcome: Daily Living - standard; Mobility – standard. |
8.20 | Colin | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 0 Mobility: 0 Outcome: no award. | Daily Living: 4 Mobility: 10 Outcome: Mobility – standard |
The picture that emerges from the table is strikingly consistent. In each case, no points whatsoever were awarded for either Daily Living or Mobility after the initial assessment. At the Mandatory Reconsideration stage - with the exception of Danny whose 6 points for Daily Living were insufficient for an award - the points remained the same.
At the tribunal stage, however, there was a marked change. Not only were the decisions reversed but the scale of the reversal was huge. With 35 points awarded, Tony’s case stands out, particularly when one element of the background is considered: for him – like Danny – broadly similar supporting information was submitted at both the Mandatory Reconsideration and tribunal stages and yet vastly different decisions were reached.
I therefore believe the detail in Table 2 shows that the current assessment processes of the DWP are not fit for purpose.
8 Is there a case for combining the assessment processes for different benefits? If not, how else could the Department streamline the application processes for people claiming more than one benefit (e.g.PIP and ESA)?
I would be against combining the assessment processes for different benefits for two reasons.
1 Such a change would be putting all an applicant’s eggs in one basket. Incorrect decisions are too frequent in the DWP system and if assessment processes were combined, one wrong decision could wipe out everything someone has to live on.
I have helped with several cases where an applicant has had a benefit (PIP or ESA) taken away and the remaining benefit that he or she is left with has been a partial lifeline. Combining assessment processes would mean there is no such lifeline.
2 Combining a benefit like PIP which is not means tested with other benefits which are means tested would have only one financial outcome for claimants under the current government: a reduction in the amount they receive as all benefits become means tested.
9. What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?
a. (For people claiming) Would you like to be able to manage your benefit claim online?
b. What would be the benefits and drawbacks of DWP bringing assessments “in house”, rather than contracting them to external organisations (Capita, Atos and Maximus)? In particular, would this help to increase trust in the process?
9b Bringing assessments ‘in house’ would be a positive step. The current outsourcing of assessment to companies like Atos results in buck-passing which makes life more difficult for a claimant. In one case, our request for Mandatory Reconsideration challenged two inaccuracies in the assessment record. This point was answered by the DWP in their Mandatory Reconsideration Notice as follows: ‘If you are unhappy with how the assessment was conducted, or with information in the report, any concerns you may have must be raised with the Health Professional directly’. For someone who is already experiencing stress because he or she is challenging the DWP, to be asked to battle on an additional front is creating a challenge which many will not take up.
10. What lessons should the Department learn from the way that it handled claims for health-related benefit claims during the pandemic: for example, relying to a greater extent on paper-based assessments, or using remote/telephone assessments?
a. Is there a case for making some of the changes permanent?
I have only experienced one telephone assessment but on that limited evidence I would be against making greater use of such assessments.
In the case in question, it was more difficult than it would have been in a face-to-face assessment for the assessor to build a rapport with and accurately assess the claimant. In answer to questions, he repeatedly said, ‘I don’t know’ or ‘I really can’t say’ which may well have sounded evasive on the phone; if the assessment had been face-to-face, his failure to understand what he was being asked would have been abundantly clear.
It was also more difficult for me, as an advocate, to contribute: sitting in the same room during a face-to-face assessment makes it relatively easy to catch the assessor’s eye; listening as a third party to a telephone conversation makes an attempted contribution more likely to appear as an interruption.
The impact of assessment/application on claimants
13. DWP recently published research on the impact of applying for PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?
The mental health of several of the people I have worked with on their PIP and ESA applications has suffered as a result of the process they have been put through. The changes I have suggested in my answer to Question 1 would reduce the impact of that process on their mental and physical health.
I would, however, make an additional point. When the DWP has turned down the benefit applications of the people I have worked with and left them in relative poverty, not once have they followed up the impact of their decisions. One particularly acute example of that impact was a man who went 7 months without any money at all. For that period, he ate neither breakfast nor lunch and only survived because of a friend who cooked one meal a day for him.
This failure to show a duty of care – this lack of humanity - was justified by Therese Coffey, Secretary of State for Work and Pensions, on 30 September 2020 to the Work and Pensions Committee when she asserted that her department has no such duty to benefit claimants. Instead, she said that duty should be left to ‘the local councils, the social services, the doctors and other people’. Such a casual approach to governmental responsibility, typified by the nebulous and throwaway term ‘other people’, has to change.
October 2021
[1] https://www.gov.uk/government/publications/reasonable-adjustments-a-legal-duty/reasonable-adjustments-a-legal-duty
[2] For people like Tony, names have been changed in these answers to protect their identities.
[3] The quotation is taken from the government’s response, emailed on 9 March 2021, to a petition entitled ‘Review the Personal Independence Payment (PIP) application process.’
[4] The words ‘tribunal stage’ have been used deliberately because not all of their cases – for example, those of Danny and Jon – reach a tribunal itself but are settled out of court.
[5] The data in the table are reproduced from information supplied by the DWP in a response dated 23 September 2021 to a Freedom of Information Request. The only information added is the final column in which I have calculated the percentage success rate in overturning PIP decisions at appeal.
[6] In their response, the DWP defined ‘learning disability’ in the following way: ‘The table below provides information on initial decisions and appeals following a Personal Independence Payment assessment for claimants whose primary condition is listed in the learning disability subgroup (Down’s syndrome, Fragile X syndrome, and learning disability – other).
‘Data is based on primary disabling condition as recorded on the PIP computer system at assessment. Claimants may often have multiple disabling conditions upon which the decision is based but only the primary condition is shown in these statistics.’
[7] Figures for 2013 and 2021 have not been included because, in the DWP’s words, there were ‘less than 5 results in this category’.
[8] Figures have been rounded to the nearest 10 by the DWP.
[9] The drop in numbers for 2020 is presumably a result of the Covid-19 pandemic.
[10] An applicant will need between 8 and 11 points for the weekly standard rate and 12 points or more for the weekly enhanced rate.