The impact of welfare reform tracking study: sweep four report

CHANGES IN THE PARTICIPANTS' SITUATIONS SINCE THE PREVIOUS SWEEP AND THE IMPACT OF THESE CHANGES

• Chapter 3 presents the changes in participants' situations since the previous sweep, and the impact of these, as well as expectations about future changes.
• There were few changes to benefits, or other income sources, since the previous sweep.
• Four participants had been assessed for PIP since the previous sweep; of these, one decision was pending, one had been awarded it, but at a lower rate than DLA, and the other two had been turned down due to a failure to provide enough supporting evidence (both were in the process of appealing). Another participant had undergone an appeal against a previously rejected PIP application, which had also been unsuccessful. Participants' views of these experiences are discussed below.
• There were few changes in employment status since the previous sweep. One participant had moved into work, one had received a promotion, one had been made permanent, and one had received a small pay rise. However, in two of these cases, the increase in income was offset by a loss of benefit entitlements that meant the net income effect was negative.
• The postponement of ESA reassessments, and of the rolling out of PIP to existing DLA claimants, meant that many participants had not had any changes to their benefits, although these were now imminent. Few felt confident that this process would run smoothly.
• Those affected by PIP reform questioned the need to assess those with unambiguous limitations, and to reassess those with permanent conditions. Listening to disabled people and involving them in the design process was considered key to implementing a system that met their needs.
• Some participants faced the prospect of changes to tax credits or the move to UC, although they were not clear how this would affect their individual situations.

This chapter presents the changes in participants' situations and experiences since the previous sweep, and the impact of these changes, as well as expectations about future changes.

Income changes and managing financially

Changes to benefits

Just under half of the sample had experienced a change to the benefits they received that had affected their income since their previous interview for the study, approximately a year before (Table 3.1). Thirteen participants had seen no change. Some of these had expected to have been reassessed for ESA in the period between the sweep 3 and 4 interviews, but these had not occurred because reassessments had been suspended during this time. One participant had experienced a change in the benefits they received due to temporarily moving into work between the interviews, but was receiving the same benefits at sweep 4 as they had at Sweep 3.

Table 3.1: Changes to benefits in the sweep 4 sample in the last year

Type of change	N
No change	13
Interim change	1
Change - receive more	2
Change - receive less	6
Change - unclear income effect	2

Two participants reported receiving slightly more; one now qualified for a Winter Fuel Payment due to their age, and the other had moved from the ESA WRAG to the Support Group.

Two participants reported relatively recent transitions, of which they were not yet sure of the impact, although neither expected that they would be worse off in the longer term. One had moved from JSA to UC, and the other had moved from out of work to in-work benefits. In both cases, the non-financial impact of this change was considered to be positive. The move to in-work benefits was precipitated by the participant's partner moving into work, which they considered a positive transition. The participant moving onto UC was the first in this study sample to do so, and they reported that so far they had found the benefit somewhat more flexible and user friendly.

"It actually encourages intermittent earnings, whereas [with JSA] there's a cap… In terms of in-house, the coaches are actually focusing on the job side of things. They don't have disability advisors any more… but if you do have an illness or something, the coaches are all trained to deal with that, and they have someone to go to for training or advice. And so far they've been really, really helpful with me, and they've spent a lot of time explaining things… I've seen a side to the Jobcentre I've never seen, a helpful side, because previously they were busy chasing money and dealing with that side of things."

Six participants experienced some loss of benefits. In two cases, an increase in income from employment had resulted in a loss of entitlement to the Warm Home Discount, and to free school meals and the school uniform grant. These losses were not offset by the additional income, and the net impact was a financial loss, despite receiving a higher income from employment.

One participant had lost entitlement to the childcare element of the Working Tax Credit ( WTC), because their partner, although still in work, was no longer working at least 16 hours per week. Childcare was still required on the days that they both worked, but they were no longer receiving any help with this.

Losses had also been incurred in the transition from DLA to PIP. One participant had moved from DLA to PIP but was now receiving less money because they had gone from the middle rate of DLA to the lower rate of PIP. They were currently in the process of appealing this decision, on the basis that their Mandatory Reconsideration had taken place without reference to the medical evidence they had provided. They felt that the scale of the loss was on a par with proposed cuts to tax credits for low income families, but that it was not viewed as sympathetically.

"I'm in the process of trying to appeal… I'm sitting at 11 points and you need 12 points for the higher level [of Daily Living], and at the moment they're saying I'm not entitled to any Mobility component… It's frustrating because everyone's up in arms at the moment because tax credits are changing and they're going to lose £1,000 a year, and all the disabled people who have lost at least £1,000 a year moving to PIP, we've just to accept that because we're 'scroungers', or that's how we're perceived."

Similarly, another participant had lost money through moving from the higher rate of both DLA components to the standard rate of both PIP components. They had narrowly missed out on being awarded the enhanced rate for Daily Living, and felt that the result of the assessment did not reflect the discussion that had taken place during it. They were left wondering whether they should have said more or gone into greater detail. The assessment process also occurred while the participant was waiting for a tribunal to appeal an ESA overpayment - a situation that has been ongoing for some time - and having both to deal with at once was creating a great deal of stress, to the extent that they felt their mental health was being affected.

"[The PIP assessor] didn't come across as trying to catch me out, you usually get the feeling they're trying to do that, she seemed nice and she seemed to get it, and when I was talking she was nodding and smiling. So maybe I didn't say enough… So pretty much feeling it from all angles, with ESA as well, quite a lot of uncertainty at the moment. I'm trying not to let it affect me too much but it's difficult… It's not so much [the income aspect], well it is that obviously, but… it's having things hanging over me. I can deal with a decision; I just want to know… The waiting around bit makes me think about it too much, and I feel a change in my mood."

Another participant who had been on DLA had failed to be awarded PIP altogether. This participant was one of three in the sample who had applied unsuccessfully for PIP. In their case, and in the case of one other participant, the problem had been a lack of medical evidence, and both were currently appealing the decision. The other participant had already had their appeal, which had been unsuccessful, and the process of applying and appealing had taken a considerable toll on their mental health.

"It was a horrible process, it actually in terms of my progress it pushed me back, and I spent a lot of towards the end of last year really struggling with depression and anxiety, because of a lot of the things this process has brought up… Being made to relive [traumatic events] is horrific… It's a horrible, horrible assessment… It's harrowing."

Changes in employment status and income

There was little change in employment status, or income from employment, in the sample (Table 3.2). Fifteen participants were out of work, and had been continuously so since their last interview. None of these participants were actively seeking work, although they varied in the extent to which they expected to return to work at some point in the future, with some hoping that this would happen, and others not expecting to ever work in the future.

One participant, who was receiving ESA, had started working three hours per week, which was considered permitted work for the purposes of their benefit entitlement. They had found that this was consuming most of their energy, and had had to cut back on other voluntary work and their distance learning course as a result. However, they felt positive about the transition:

"I really enjoy it. It's not really that different from some of the volunteer stuff I've done in the past, but it's really nice having that paid element, in terms of feeling a bit more valued, feeling like I've got a job."

Table 3.2: Employment transitions since previous interview

Status	N
Continuously employed between sweeps	6
JSA to employment	1
ESA with permitted employment	1
Interim employment	2
Out of work at both time points	15

Six participants had been in employment at the previous sweep, and had been continuously employed since then. Of these, one had received a promotion, one had been made permanent, and one had received a small pay rise.

One participant had been on JSA at sweep 3, but had moved into work by sweep 4. Although they felt that this had been the right decision overall, there were a number of downsides; they did not feel any better off financially, and had much less time to spend with their children. They questioned whether it had been worth it, as their quality of life had deteriorated. Although they hoped to progress in their job, they expected any salary increase to be offset by reductions in their tax credits, and did not expect to ever be in a position where they were not struggling financially to some extent.

"You start examining the quality of your own life, and is it worth it? ... I find myself struggling, and I shouldn't be struggling… I don't think I'll ever get out of the rut that I'm in [because any extra money will be subtracted from benefits], so I'm always going to be in this rut, I'm never going to have the money to take the children away on holiday or anything like that."

The majority of the sample had seen no change in how they were managing financially; 14 said there was no change. Six said they felt better off, although none felt substantially better off; they reported small changes that had made a slight difference to their household budget, such as paying off a debt. One person said they felt worse off, and two were in the midst of a transition and found it difficult to say.

Expected changes

Most participants expected some change to their benefits in the next year (Table 3.3). Only two said they did not expect any change, although both still held a general perception that benefits are always likely to change. Four participants were expecting some changes to their benefits, but due to likely changes in their circumstances rather than changes to the benefits themselves. Two were expecting a change, pending an appeal against a change that had reduced the amount they received.

Table 3.3: Expectation of changes to benefits in the next year

Expectation	N
No specific change	2
Expecting change due to circumstances	4
Pending appeals	2
Transition to PIP	13
Changes to tax credits	3

Three participants expected that their tax credits would be reduced, either due to proposed cuts to tax credits, or as a result of the move to UC. This was a source of concern, although there was considerable uncertainty about exactly how it would affect them:

"I know there's an ongoing issue with the tax credits. I should be fine in the meantime, but that will be a factor whenever they do decide they're going to reduce that, that's a big worrying factor. If that does come into force I will struggle."

"I'm unsure how this Universal Credit is going to work, or if I'm going to be affected by it. I don't really understand it if I'm honest. So I'll just wait. I've not heard anything as yet, but I don't think as a single parent in my circumstances, from what I've heard, I don't think it's going to change dramatically for me. I'm hoping not! I mean if I receive less I will be absolutely snookered."

Fourteen participants were receiving DLA and expecting to be assessed for PIP. Of these, one was expecting to lose their entitlement, three were relatively confident that they would continue to receive at least as much as they did at present, and the remainder were unsure or not confident.

The participant who expected a loss felt that they would no longer qualify under the more stringent criteria for PIP. None were certain that they would be successful, but those who said they were quite confident all felt that they had quite a good understanding of how the criteria applied to them specifically, and believed that they met the criteria in a fairly unambiguous way, and could provide the relevant evidence for this.

Those who were less confident, but still hopeful, were relatively sure they would meet the criteria, but because they knew of others who had lost their entitlement, and due to distrust of the system generally, this meant their confidence was low:

"I think that I'm a fair candidate, or I should be a fair candidate for getting PIP, but the fact that blind people have lost their contribution, and people with [the same condition as me] as well, I'm just going to be like the rest of the people that get reviewed, and we know it's not equitably assessed, so I can't say at this point in time what the outcome will be."

"Having seen some of my friends, who are wheelchair bound and need help to get up in the morning, get their benefits stopped completely, I see them taking one look at me and the fact I can dress myself and actually walk, although not a great distance, I'd need an arm to go any distance, I can see them taking mine away instantly, I can, honestly."

Concerns centred around two main issues. The first was the assessment questions, which were perceived not to capture the full extent of the way that conditions can impact day to day life. Many of those with an illness or disability felt that their condition fluctuated a great deal and that it was difficult to say whether they could do something or not, as their abilities varied day to day. This was true both of those with mental health issues and those with physical conditions.

"I think it'll be quite hard. I think the points system they use… doesn't take a holistic view of people's needs or the expenses they have in their life due to their disability… It's hard to say [what my outcome will be]; it depends who you get to see. Also my situation, my condition changes a lot."

"To be honest I think they should just abandon these assessments completely and go on what the doctors say, regardless of seeing a person and asking them if they can pick something up off the floor or something stupid like that."

"I don't think they're looking at individual cases, I think it's all a tick box exercise, and they have so many quotas they need to fit into, that I don't think they really look at it on a case by case basis."

The other issue was a perception of inconsistency between assessors and decision makers, and the suspicion that many of these were under pressure to reject claimants. Perhaps unsurprisingly, given that a stated aim of PIP was to reduce the total caseload, participants perceived that the aim of the reassessment was ultimately to reject as many claimants as possible.

"The form is to strip you from your benefits, that's it."

"I'm a little bit sceptical nowadays, the decision makers may have some political pressure on them to cut costs, and that's their priority rather than making the right decision for the right reasons… In my own experience in the past the person was given the benefit of the doubt."

"I'm quite convinced that they will discover that my eyesight is 2020 and I can run and walk and charge about without the assistance of a guide dog or a cane."

"I think they'll try everything to get me off it."

Those with additional income sources, such as a pension, or income from work or a partner who worked, were less concerned about the potential loss of their present DLA income, although none felt they would cope with the loss without problems.

PIP in Scotland

Those currently receiving DLA were asked about their thoughts on how the system might best operate after it has been devolved to the Scottish Parliament as part of the Scotland Bill 2015-2016.

The first issue raised was where the starting point should be. Rather than design something from scratch, most were fairly satisfied with DLA and felt that this was a reasonable point of departure; however, it was also seen as an opportunity to reform it for the better, without taking the same route as PIP. Some felt that changes to DLA were necessary in order to reduce fraud and make sure it was helping those who needed it:

"I think DLA is a reasonable assessment as far as myself goes. But I do know obviously some people have taken advantage of the system and beaten the system, and these people shouldn't be on DLA. So for every instance it's not necessarily appropriate."

"There were a lot of repetitive questions that were there to try and catch you out or ask things in other ways, which to an extent I can understand because they don't want people claiming it fraudulently. We don't want people, oh I've got a sore back, you know what I mean, because there was abuse in the past, and we have to make sure that doesn't happen again. But we're not wanting people who are in genuine need of it being automatically turned down."

"I think the need for a closer eye on long term conditions was fair, but to go about it the way they did [with the new assessment process] just exacerbated things and made people's health even worse… I think DLA needed tweaking, it didn't need a whole new system. It was sold as something it wasn't, and I don't think it was necessary."

Participants perceived a number of design pitfalls with PIP that should be avoided. It was felt that the PIP criteria were too abstract, and that it should not be simply a case of whether a person can do an activity, but in what context; under what conditions, in what environment, and in conjunction with what? One participant gave the example that a person may be able to meet the mobility criteria somewhere where there was a smooth walking surface and that was accessible (e.g. a shopping centre), but not on an uneven pavement with roads to cross. Another participant stressed the importance of a residual category, for those who do not quite fit the criteria but are demonstrably in need. There was also a widespread demand for transparency, as there was a lot of confusion about the new criteria and the implications of using aids and assistive technologies.

"I'm concerned about the mobility part, I don't know how it's working out, this twenty metres thing, if you can manage to go twenty metres in your chair, you're mobile basically. That's assuming there's pavements, no roads to negotiate. I couldn't cross the road safely by myself… And [my local] streets are absolutely terrible."

There was some debate over whether the life or indefinite awards that were available under DLA should be reinstated. Some felt that there was no point in reassessing those with permanent conditions:

"Why waste money reassessing people? I'd love to believe in miracles, but people don't regrow a lost limb, sight doesn't come back. Reassessment is there to irritate and frighten people, and it's not saving the government any money, because most serious conditions, once you've got them, you've got them."

"The whole process is so unfair, it's just continually assessing and reassessing, which is not helpful for anyone. If you know you're not going to get better, the last thing you need is soul destroying forms every two years, to continually put it all in again and remind yourself you're not going to get any better."

Others welcomed a move towards a system that does not 'abandon' people on DLA for life. However, it was suggested that perhaps revisiting claimants could be less about reassessment, and more about helping people to access the services that they need.

"I think there was an issue with Disability Living Allowance that people were getting left alone for years and years. I think there should be an element where people are at least invited into Jobcentres or something to see what their situation was or how the government could help them, not necessarily to paid work, but just to live a more inclusive life."

Some participants suggested that perhaps, in the presence of medical certification, some conditions should be considered as automatically entitling people to the benefit. Assessment efforts could then be targeted on the more ambiguous cases. There was perceived to be a lot of duplication in the process of applying for benefits. Some were not clear why they were required to fill in a form when the same information would be sought from their doctor in any case. Others noted the stress of making multiple applications for different benefits, often submitting very similar information and accompanying evidence; for example those applying for both ESA and DLA, and perhaps for social care at the same time. These issues raised the question of whether a more joined up system between health and benefits agencies might reduce stress and required workload for those claiming benefits.

"I'd have thought it would be fairer for people with quite complex disabilities that don't necessarily present as a disability you can see, I think it's more beneficial to take the information from a GP or a hospital consultant, rather than continually run them through assessment processes… A bit like they do with driving licences, where every three years if you have a medical renewal, they send you some paperwork to sign for them to look in your medical files and speak to your consultant, and then that goes back to the driving licence authority and they make decisions. Something like that, a joined up approach."

The introduction of another face-to-face assessment process with PIP was almost universally perceived as negative by participants. Few saw a benefit to insisting on a face-to-face interview in every case, especially given the difficulty of capturing the impact of a fluctuating condition during a brief meeting with a stranger. Assessments have been a source of considerable stress to many participants in recent years, and they hoped that the devolved approach could at least be a more approachable and user-friendly process. It was felt that, if there are to be face-to-face assessments, ill and disabled people should not be expected to make long journeys to attend appointments.

Many stressed the importance, in designing a suitable system of support, of listening to disabled people about how their conditions affect their daily life, and making sure the criteria reflect and are able to capture this impact. Several mentioned some form of co-production, feeling that disabled people should be involved in the design and assessment process. Indeed, listening emerged as an issue more generally, with many participants feeling that politicians do not understand their needs, and could perhaps benefit from some experience of their situation.

"They're really sticking to their guns; they're not listening to other people with conditions. I just feel it's as if they don't care, they're not bothering to look at all the recommendations that have been provided to them."

"They need to experience it; they need to do it themselves. It really annoys me; they've no concept of how hard it is."

Most participants said that taking part in this study had made them feel listened to, and appreciated the chance to share their experiences.

"The research you're doing is really valuable, because you're actually taking a pragmatic position on it and actually talking to disabled people about their experiences and what we're finding."

"It's quite good that you're actually doing something like that, because it does help when you do these research things and give it to government and say this is what is happening and this is how people are feeling about it. It is useful, and helpful."

"[Politicians] are on a different planet, they have no idea, and that's why I like what you're doing, that somebody is listening… [This research is] something that needed to be done, and hopefully people listen to what you guys put together."