Written evidence from Rosa Morris (HAB0105)

 

TI am a Welfare Rights Advisor for Islington Mind where we support service users with disability related benefits. I have also had long term personal experience as a claimant for Incapacity Benefit and Employment and Support Allowance, and completed a PhD which looked at the history of out of work related disability benefits and the development of the Work Capability Assessment, as well as people’s experiences of the WCA.

Suitability of assessments

  1. How could DWP improve the quality of assessments for health-related benefits?

Believe claimants’ own accounts of their bodies and lives.

Simply applying regulations properly would make an immediate improvement. In particular, it is concerning is how badly the DWP and assessors seem to apply Regulations 4; regarding someone needing to do an activity safely, to an acceptable standard, repeatedly, and within a reasonable time period and regulation 7; regarding someone needing to meet the descriptor more than 50% of the time to be eligible.

From reading many decision letters, assessment reports, appeal submissions from the DWP, and then attending tribunals, it would appear that the reason there is such a high appeal success rate is because the tribunal apply these regulations properly and also that they place more weight on the testimony of the claimant.

A good example of this not being applied is assessors repeatedly say that in a report that a claimant “didn’t sound anxious”, or it’s determined that they can engage with others because they had a good rapport” with the assessor. This is not only a poor understanding of anxiety but also fails to apply the regulations. The way someone is for a 1-2 hour assessment should not be used to say how someone is for the majority of the time. Many other examples are repeatedly used which go against the actual legislation and are one of the reasons for such high success rates at appeal.

A major improvement to the ESA assessments would be to introduce these same regulations, as currently there is only case law which is less clear and straightforward.

  1. Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?

Prior to 2018 I had experience of firstly being a long term claimant of Incapacity Benefit and then Employment and Support Allowance, and also was in the process of finishing a PhD which looked at the history and development of out of work disability benefits and the Work Capability Assessment in particular. In mid 2018 I started to work as a volunteer at a local Mind’s Welfare Benefits Clinic and since early 2019 have been the paid Team Leader of the clinic. This has meant I have experience of supporting people with ESA and PIP claims who experience mental distress. I don’t think there has been any real improvement unfortunately. Since 2016 and re-issued guidance to ESA assessors about Regulation 35 it has clearly been harder for people claiming due to mental ill health to get a Support Group outcome. It is also incredibly concerning that data for Universal Credit WCA’s is not detailed or made available by the DWP.

One improvement with PIP has been that since the change to Activity 9 (engaging with other people face to face) about the definition of social support, we have noticed an increase in people getting points for this. However, the lower points prompting descriptor is still far too often given to our service users who have extreme social anxiety and who struggle to engage with others even with social support.

It is also very concerning how difficult it has been for people experiencing mental distress with completing journeys to get the points related to needing to be accompanied. The DWP’s definition of ‘overwhelming psychological distress’ is unclear, but we have had many service users who cannot undertake unfamiliar journeys without being accompanied, due to the severity of their mental distress, being given no points for this. All these cases have then been successful at appeal.

There was an improvement at the start of the pandemic where people were given 3 months to complete forms and ESA reviews seemed to be put on hold. There was also an increase in paper based assessment decisions, which lessoned the distress of claimants. Unfortunately, all of these improvements were short lived.

3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?

The descriptors for PIP are far better than the descriptors for ESA/the WCA, but they are still inadequate, particularly when it comes to mental distress.

The activities themselves fail to capture many of the daily tasks people have difficulty, need support with, or use aids for. For example, none of them are related to activities required within a household like keeping a home clean, doing laundry, tidying etc. This is a particular issue for those claiming for mental health reasons and hoarders specifically.

The way the reading and communication descriptors are awarded is also a big concern. They do not appear to consider the impact of mental illness on these activities and even those with a diagnosed cognitive impairment struggle to be awarded any points, despite needing significant support to read, understand, or explain themselves verbally.

There’s also a specific problem with descriptor for the PIP activity Planning and Following a Journey. The DWP are now meant to consider whether someone needs accompanying on familiar or unfamiliar journeys due to overwhelming psychological distress. However, the wording of these descriptors does not make it clear that these apply to mental distress. They state that someone “cannot follow the route of a [familiar/unfamiliar] journey without another person, an assistance dog or an orientation aid”. This is in contrast to two of the other descriptors which explicitly mention overwhelming psychological distress.

Some suggestions for what daily activities activities an improved assessment could consider are (taken from The Commission on Social Security):

4. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?

No. They need to consider the impact of work on people and the required steps to be able to get to work. For example, question 15, Getting About, does not have a support group descriptor. If someone cannot reliably get to somewhere outside their home it is going to be very hard for them to get and sustain a job, or do any work related activity. Despite the rise in home working it is very unlikely that an interview and all work can be done from home and it is likely to be harder for someone with a history of mental illness to get such a job if it is available.

Question 16, Coping with social engagement due to cognitive impairment or mental disorder, does have a support group descriptor, but the wording for this is that “social contact is always precluded due to difficulty relating to others or significant distress experienced by the individual”. If “engagement in social contact with someone unfamiliar to the claimant is always precluded due to difficulty relating to others or significant distress experienced by the individual” then they receive 9 points, which alone is not enough to even be in the work related activity group. This makes it both incredibly hard to qualify for the support group with severe social anxiety and is not reflective of what is required if someone is to find and sustain a job or engage in work related activity. Being able to engage in social contact with unfamiliar people is a requirement to get any job and may well  be an ongoing requirement to sustain employment.

Because of how hard it is to get into the support group based on just support group descriptors there was a period where many people claiming due to mental ill health were placed in the support group via regulation 35, due to the substantial risk of harm if they were expected to work or do work related activity. It appeared that assessors were acknowledging that claimants appeared to be unable to work due to mental distress, but that none of the descriptors acknowledged this.

Following guidance from the DWP in 2015, that work coaches would be able to give appropriate work related activity, there was a significant reduction in the use of regulation 35 and more use of regulation 29. Our experience of Regulation 29 being used more than Regulation 35, on the basis that job coaches can give work related activity which is tailored to someone’s distress and level of risk, in practice usually means work coaches leaving people alone and not asking them to do anything. This is a relief for many claimants, but it means a significantly lower income than the support group and there is always this fear that they will be asked to do activities that they find too difficult to cope with and will then be sanctioned.

From my personal experience, my PhD research, and from supporting many people claiming ESA for mental health reasons, the WCA and the descriptors are a particular problem when it comes to mental ill health and do not consider the reality of trying to work with a mental illness. A way to address this would be if an assessment was truly co-produced with disabled people as it would be more likely to ensure that the questions asked are relevant to both someones impairment/health condition and how this impacts on them finding and sustaining work. In so doing it could also include what have been described as real worldtests where age, work experience and skills, as well as local labour markets are taken into consideration. This would be particularly important given the correlation between rates of claims and regional variations in labour markets. It would be important to consider not just the general availability of jobs locally but the types of jobs that are available and whether an individual had the necessary skills and experience. Arguably a better assessment and support system would not attempt to create incentivesto push people into employment but would work with them to decide what, if any, type of work may be possible without causing additional harm to their health and what support would be required to make this possible. It could involve also working with employers and perhaps having available continuing advice, support and advocacy throughout the duration someone is in employment.

5. DLA (for children under the age of 16) and Attendance Allowance usually use paper-based rather than face-to-face assessments. How well is this working?

  1. Before PIP replaced DLA for adults, DLA was also assessed using a paper-based system. What were the benefits and drawbacks of this approach?

The benefit was that people didn’t have to go through the stress of a face to face assessment. However, if an assessment took the approach of being a supportive and collaborative process it could be a very different experience. Some of the downsides of a paper based assessment is that it doesn’t capture the full picture of someone’s situation and difficulty. Individualised assessments should be based on claimants self-identified support need and testimony.

6. How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?

There are definitely problems at the moment where some medical evidence from clinicians are ignored in favour of what an assessor reports during an assessment - despite this just being a snapshot of someone’s life and a medical professional involved in someone treatment being more likely to know more about the impact of their condition. However, whilst it would always be good to reduce the need for claimants to go through an assessment, there is a problem where people do not have access to such a clinician. This can be  a particular problem for those with mental illness and is already frequently used as evidence that their mental illness is not having a significant impact on their daily life. The reality is it is very hard to get mental health treatment from clinicians and our experiences of service users with long term mental illness is that often it is particularly hard to have this over a long period of time. Many people with mental health conditions also find it very hard to request or sustain any treatment that is available.

7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?

Our experience of tribunals is that they apply the regulations around the descriptors far more appropriately than the DWP appear to do. Far too often the snapshot picture an assessor gets is used to say that someone is fine with a number of activities, regardless of the claimant saying   that they are not for the majority of the time. Tribunal panels appear to place more weight on the testimony of the claimant, whereas the DWP and assessor reports seem to start from a point of not believing a claimant’s testimony. Tribunal panels ask more detail about how claimants manage different activities and don’t take initial answers at face value. For example, because someone can physically do something they may respond to a question about it by talking about when they do do that activity. However, that doesn’t mean that they are able to do that activity for the majority of the time and, in our experience, tribunal panels ask more questions about whether people actually do activities the majority of the time and if not why.

  1. What could DWP change earlier in the process to ensure that fewer cases go to appeal?

The DWP have previously said the high appeal success rate is due to additional evidence been given at the point of an appeal. One reason this may happen is due to the short deadlines given for both forms and Mandatory Reconsiderations, where the most important thing is to get them back in time and there is rarely enough time to collect additional evidence. Often our service users will have informed the DWP about support they get in their form and at an assessment, but this is not fully considered due to them not having any letters from services they get this support from. When you get to the appeal stage there is more time to obtain this additional evidence.

In all there are three things the DWP could do to reduce the numbers going to appeal:

-      extend the time given for forms and Mandatory Reconsiderations

-      place  more weight on the claimant’s testimony

-      appropriately apply the regulations 4 and 7 for PIP and introducing similar regulations for the WCA to make it less arbitrary

Making such changes would enable the DWP to make more correct decisions first time that did not require appealing.

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 (eg. PIP and ESA)?

The problem with combining the assessment is that they are very different benefits, assessing very different things. There is a real risk of the principle of PIP being lost if there was a combined assessment. There is a big fear that doing so would ultimately result in PIP no longer being about the additional costs disabled people face and that it would not remain a non-means tested benefit..

9. What are your views on the Department’s Health Transformation Programme”? What changes would you like to see under the programme?

  1. (For people claiming) Would you like to be able to manage your benefit claim online?

Yes, but there needs to be an easily accessible alternative for people who cannot do this

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?

To increase trust in the process there would need to be a radical transformation, starting with how the process is designed and implemented. Without this the distrust of the DWP and the decisions of assessments will continue regardless of who delivers them.

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?

  1. Is there a case for making some of the changes permanent?

It would definitely be good to keep the option of a phone assessment should someone want this. It would also be good to have more paper based assessments. The thing that made the biggest difference was when people were given 3 months to complete forms and the pause on reviews for ESA. As mentioned elsewhere, there are many reasons why longer deadlines to complete forms would reduce the distress to claimants, make it easier to access any support required to complete the form, make it easier to obtain additional evidence, and make it easier and more likely that the DWP can make the correct decision at the assessment stage and reduce the need for appeals.

12. DWP believes that applications for some benefits dropped sharply at the start of the pandemic because claimants werent able to access support (for example, from third sector organisations) to complete their applications. What are the implications of this for how the Department ensures people are able to access health-related benefits consistently?

  1. How can the Department best help the third sector to support claimants in their applications?

Allow much longer deadlines for forms to be complete. It takes us 3 one hour appointments with someone to complete a form as it is a very stressful process and people find it hard to cope with trying to do it in less time, but any an appointment longer than an hour is also very challenging for most people. As our service has very limited capacity and only runs on a Friday this means it is impossible to not need an extension for every case.  A 3 month deadline would help reduce some of the stress and allow someone more time to be able to access the support they need to complete the form. It also allows more time to collect additional evidence. The DWP have claimed the reason for the high appeal success rate is due to additional evidence being sent at the time of the appeal that they did not have when making their decision. Part of the reason for this is because people simply do not have the time or ability to collect this evidence in the 4 weeks (which is always more like 2 and a half weeks when posting  is taken into account) to complete the form. So, giving people more time to complete the form and gather evidence may also mean more decisions made right first time and less people having to go to appeal.

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?

One of the key issues, which is addressed in this research, is about the time given to complete forms. The 6 weeks suggested in the research is still not long enough in our experience. As noted in the research, it can take a while for someone to receive the form and our experience is that it can then be hard for someone to open the letter and ask for support. We are told by medical professionals that any additional evidence may take 30 working days to receive. In our experience, it take 3 one hour appointments to complete a form. This is due to the length and complexity of the form, combined with how difficult people find it to talk about the questions asked and needing time to consider what an average week etc is like. In order to reduce the stress on claimants, make it more likely that they can access support and obtain additional evidence, and reduce the number of calls to the DWP requesting extensions, reverting to the 12 week deadline used at the start of the pandemic would make a massive different. In any increase to the length of time to complete forms the DWP would need to consider how long the process takes to get an outcome and make sure to send forms enough in advance to avoid people being left without benefits awaiting an assessment. This is only an issue with PIP due to the nature of the award length. If PIP was awarded with guidance as to when it should be reviewed, but that it would not be stopped before a full review has taken place, this would resolve that and prevent a lot of distress, debt, and misery.

It is also our experience, and shown during my own research, that the lack of transparency added to the distress of claiming. Whilst the DWP’s suggestion of including the descriptors and points would be helpful for some, the wording of these descriptors are themselves often confusing. For example, the wording does not convey the issues of reliability and majority of the time, and appears to be stating whether someone can ever do something. The wording also fails to reflect that there’s a difference between being physically able to do something and not actually being able to do it due to mental ill health.

Waits for assessments

14. What could the Department to do to shorten waits for health-related benefit assessments—especially for ESA/UC?

Our experience of UC in particular is that part of the wait is actually related to people not being given a UC50 form from the job centre and instead being told to just keep giving them fit notes from their GP.

  1. How effectively does the assessment rate” for ESA cover disabled peoples’ living costs while they wait for an assessment? Is there a case for introducing an assessment rate for other health-related benefits?

The assessment rate, and the Work Related Activity/Limited Capability for Work, rate is inadequate and frequently results in disabled people having to access food banks and emergency financial support and in many cases people get into debt.

The case for an assessment rate for PIP is that additional costs are already present - which is why people claim. The issue would be if someone was found not eligible as it would not be appropriate to have to pay any money back. What may have a stronger case is some kind of payment rate for whilst someone is appealing a decision. The main need for an assessment rate is due to how long it might take for someone to go through the assessment process. This is even longer when it comes to going through, first, a Mandatory Reconsideration and then an Appeal. Although claimants get a back-payment if an Appeal is successful this is often after they have got into debt and had many months and, quite often over a year, of struggle getting to that point.

Health assessments in the devolved administrations

15. The Scottish Government intends to introduce its own assessment process for the Adult Disability Payment, which will replace PIP in Scotland from 2022. What could DWP learn from the approach of the Scottish Government?

They could learn from involving disabled claimants in the process of developing policy more substantially. I have attended a number of different types of consultation events held by the DWP and it is clear that they do not listen, learn and act on what disabled claimants tell them.

Policy development

16. How effectively does DWP work with stakeholders—including disabled people—to develop policy and monitor operational concerns about health-related benefits?

Poorly. I have attended a number of meetings with the DWP, in both an individual capacity and as a Welfare Advisor and found that both civil servants and ministers do not appear to fully understand the key concerns and issues around disability related benefits. For example a previous Minister for Disabled people claimed that the main problem was claimants not understanding the assessment process, rather than a problem with the assessment process themselves.

I have also attended events where the department, including a Minister, were meant to be engaging with disabled claimants with mental health conditions and the Minister left after making a speech about how well the DWP were supporting claimants with mental health conditions. This meant they were not present to hear  the claimants with mental health conditions share their experiences of the DWP and assessments. Understandably this made them feel like they were not being listened to and that the meeting was a waste of time and simply a way for the department to claim that they had engaged with and consulted claimants.

a. What steps could the Department take to improve its engagement with stakeholders?

The point of any engagement is to actually understand and act on concerns that are raised. Simply meeting and talking with Stakeholders is pointless without this. Perhaps, when engaging with Stakeholders the Department could do more to show that they have listened and understood by acting and addressing concerns with concrete changes.

Those responsible for developing policy would also benefit from observing the claims process, for example by sitting in on sessions where a welfare rights advisor was assisting a claimant fill out a form, although I recognise that this may be difficult to do in a way that claimants felt at ease with.

Overall, the experience of claimants needs to be embedded in the process of policy development and in its implementation. The DWP needs to give considerable thought as to how this might be done by opening up a genuine dialogue with those whose standard of living depends on the department’s policy and practice.

             

 

December 2021