Written evidence from Merton Centre for Independent Living (PEA0335)

Summary

Background

Merton CIL are a user-led Disabled people’s organisation run by Disabled people, for Disabled people. We deliver a range of services to Disabled people in London Borough of Merton, including advice and advocacy services. Through our case work with local Disabled people, we have gathered evidence of significant issues facing Disabled people who apply for benefits, and this briefing focuses on Personal Independence Payment (PIP) issues. This is in addition to the fact that Disabled people are facing disadvantage across key areas of their lives[1], and are experiencing health inequalities as a consequence[2].

This is an updated paper following on from work we first carried out in October 2016. In that time, we have seen an increasing number of people struggling with the PIP process.

It is not our intention to try to address or highlight all the issues with PIP which exist and which have been well-documented elsewhere[3],[4], including in Parliament during an Adjournment debate with MP Siobhain McDonagh[5]. Our intention is to focus on specific local challenges and, where appropriate, show these within a national context.

What are some general issues with Personal Independence Payments (PIP)?

PIP is a benefit that helps with some of the extra costs caused by long term ill-health or disability. It is a replacement for Disability Living Allowance (DLA) and has different eligibility criteria, ie it is the benefit which has changed, and not people’s impairments.

At Merton CIL we have supported numerous people through the PIP benefits process. Based on our direct experience supporting local Disabled People, we gathered evidence and raised concerns about problems with the process in October 2016. This was picked up by MP for Mitcham and Morden, Siobhain McDonagh, and raised in Parliament. We also covered the issue in our Spring 2017 newsletter, which includes personal testimonies from some of our readers.

Following the release of new DWP statistics, we have been able to identify that over half of Disabled People in Merton who previously received DLA, are having their benefit reduced or losing it completely in the changeover to PIP. The impact on people having their PIP cut is huge, and could amount to several thousand pounds over a year, because people also lose their entitlement to other support like Blue Badge, or Carers Allowance for the person caring for them.  

Our casework evidence has found that the process of assessing Disabled People for PIP is unfair. We have found that assessment centres are inaccessible; this includes centres which are physically inaccessible, have no disabled parking, or are as far away as Barking. We found that assessment centres are being deliberately overbooked, so Disabled People face long waits and last minute cancellations. One assessor told us she had 20 assessments on her list, but she could only do 6 in the time available. Finally, we found that there was a worryingly high number of inaccurate assessments where people were being awarded zero points at assessment, but then awarded 30 points if they appealed and went to tribunal. In fact, following a Freedom of Information request, Merton CIL has discovered that 77% of PIP appeals are overturned by Sutton Tribunal, which is significantly higher than the national average (65%). This means that although the DWP claimed people weren’t eligible for PIP, the Tribunal awarded the benefit saying that the person had been entitled all along. This means that assessors are getting it wrong in over two thirds of cases.

Earlier this month, Merton CIL were given the opportunity to formally present our concerns to the Merton Healthier Communities and Older People Overview and Scrutiny Panel, and we supported one of our service users to speak up about their experience too. Councillors were shocked by the report and experiences, making comments such as “we should challenge this”; “there is a harmful impact”; “its completely unacceptable”; “its wrong”. Representatives from DWP had decided not to attend the meeting, and also declined to attend a follow up meeting.

Specific Issues with Personal Independence Payment (PIP) Benefits Assessments in Merton

Our work with local Disabled people has identified three key issues with assessments for PIP:

1. Inaccessible assessment centres. This includes centres which are physically inaccessible, or those located far away from the person’s home
2. Overbooking of assessment centres. This leads to last minute cancellations or excessively long waits at assessment centres
3. Inaccurate Assessments. Many Disabled people are wrongly being found ineligible for PIP at assessment stage, and are being forced to go to tribunal

The scale of the issue

There are 2,638 working age people currently claiming DLA in Merton.[6] All of these people will be told to reapply for PIP if they want to keep receiving a benefit, even people who previously received lifetime DLA awards.

Of the 1,352 people who were previously on DLA and have attempted to transfer to PIP since its introduction, 28% (394 people) have been denied the benefit completely[7]. This is significantly higher than the UK average of 25%[8]

A further 311 people are estimated to have seen their benefit decreased in the changeover from DLA to PIP[9].

In addition to the 705 people who have lost their benefit or seen it reduced already, it is expected that at least a further 1,345 Disabled people in Merton are going to lose out in the transfer from DLA to PIP over the next few months. This is in addition to new claimants deemed ineligible, of whom there have already been 1,815 people (54% of new applicants).

It should be noted that people who are turned down for the benefit can appeal, and many of these people are being wrongly turned down for the benefit and awarded it on appeal. Our own data shows that of the people who appeal this decision and reach the first “Mandatory Reconsideration” stage, nearly 9 in 10 will still be refused the benefit. This is in line with the national average and DWP targets for refusal at Mandatory Reconsideration stage.[10] However, once people reach the Tribunal stage, 86% of our services users and 77% of Sutton tribunal cases will be awarded the benefit, and were therefore entitled to it all along (this is ahead of the national average of 64%[11]).

It was highlighted at the Sutton Tribunal User Group by Tribunal Judge Jeremy Bennett that the percentage rate of DWP decisions being overturned at tribunal suggested something was clearly not right with the assessment and decision making process.“The Tribunal is overturning 60% of all appeals.  This appears to be wrong.  DWP should be making a greater effort to get the decision right first time.  However DWP often quote that only 3 to 4% of their overall caseload is overturned at appeal.  That is the wrong way to look at the issue.  3 to 4% is still upwards of 100‚000 Appellants even when we were at the lowest number of appeals.”[12]

The impact of losing PIP

Individuals in receipt of DLA/PIP are exempt from a number of other welfare changes: the single room rate change, the overall benefit cap and in some boroughs, council tax support. If entitlement to DLA/PIP is lost, not only will individuals lose their DLA/PIP income, but they could also lose income from other benefits.[13] This includes some Housing Benefit, some disability premiums on types of Income Support, Job Seekers Allowance, Employment Support Allowance and Working Tax Credits. Somebody caring for the individual can lose their Carers Allowance, and the individual will also often lose ‘passported’ benefits such as blue badge and concessionary travel.[14] Overall, loss of PIP can also entail the loss of thousands per year in associated benefits, depending on the person’s circumstances. Even though a high proportion of people who go to appeal are successful in getting the benefit back, this is a lengthy process and in many cases a lot of damage has already been done, such as the loss of a Motability car which someone might have used to get to work, or possession proceedings started and they risk losing their home. 

These losses will have a knock-on effect on eg people's housing, livelihoods and incomes and impact people’s health and wellbeing. There is a growing body of evidence that assessments themselves are having a negative impact on people's mental health[15]. 

In addition to the stress and anxiety caused to the individual from having to go to all the way to Tribunal for something they are entitled to, there is a cost to the state, such as Tribunal costs, increased healthcare costs, cost of possession proceedings, etc. There is an impact on organisations supporting the individual too. For example, Council staff from Social Services may end up attending Tribunals with some Disabled people, and for Merton CIL, there is an organisational impact as every appeal takes on average an additional 20+ hours work, which is time taken away from other people who also need support.

In Detail

1. Inaccessible Assessment Centres

At Merton CIL we regularly get calls from Merton residents who are being asked to attend assessment centres which are difficult for them to get to. This includes being told to travel to Deptford, East London or Vauxhall, all of which require independent travel skills, and the ability to make lengthy journeys with multiple changes. Even closer assessment centres can be difficult to get to, with typical centres being located in Wandsworth and Croydon, neither very easy to get to for Merton residents.

PIP assessment centres appear to have been set up with little consideration for the access needs of the people visiting them. For example, in a Wandsworth[16] centre, there is no parking. The nearest disabled parking spaces are over 200 meters away, and the nearest general car park requires you to walk through a shopping centre before reaching the assessment centre (see pictures 1 and 2). We have had to resort to asking people to get dropped off outside the centre, even though this requires them to drive into a private road and wait on yellow lines and is in direct conflict with the information provided by the centre which tells people not to do this. In addition, this particular centre is very poorly marked and signposted and almost impossible to find unless you have been before. Another example is when assessment centres have wheelchair inaccessible buildings, as described in our case study below.

Inaccessible centres are also those which fail to take into account the communication, health or support needs of people attending the centres. For example, one particular centre[17] has very poor support for people waiting for appointments and we have frequently witnessed people crying in the waiting room, which is distressing for everyone else too, and on occasion distressed individuals displaying aggressive or challenging behavior. In one case we witnessed an individual repeatedly banging their head against the wall, which was ignored by staff at the centre. Our advocate was with someone with support needs, otherwise we would have intervened.

Case Study 1 – An Inaccessible Centre

A woman with severe learning difficulties had been invited to an assessment for PIP in Croydon[18]. Before her involvement with Merton CIL she had to rearrange her appointment twice[19] due to 1. As she was unable to get support to go to this appointment. 2. For a hospital appointment.

When she came to Merton CIL to prepare for her assessment her assigned worker noticed that the centre she had been asked to go to was one that Merton CIL knows not to be accessible. Since her assigned worker is a wheelchair user they rang the provider to request that the appointment be moved.

The worker explained that the lady could not attend alone as she is unable to communicate without prompting. She cannot remember the names of her conditions. She is fearful of new places. The worker explained that a wheelchair user would therefore be attending the appointment with her.

The worker was told that the appointment could not be rearranged as it had been moved twice already. The worker said she was aware of that and the guidelines however she would like them to be clear that the inaccessibility of the property was not the fault of the claimant.  The rep said he would speak to his manager.  After a period on hold the rep can back online and explained that the building was accessible. The worker stated that both she had her colleagues had been to this building and that it was not. After the worker explained the multiple problems with the building the rep admitted her had not been there himself and was not aware of these problems. The rep at one point suggested the wheelchair user could fold up their wheelchair to access the assessment room. The worker explained that it was unacceptable to expect any wheelchair user to do this particularly without ever inquiring whether it was physical possible or safe to do so.

The worker was told that herself and the claimant would have to wait for the only accessible room in the building to become available to have the assessment. The worker suggested that this was impractical and asked why the provider could not book appointments based upon access needs. The worker explained that this was not the first time that this problem had occurred and that previously Merton CIL and their service users had had to wait hours for the accessible room to become available despite turning up at their appointment times. The worker suggested it might be more supportive for the Centre staff and claimants if the centre could ensure that access needs were accounted for before claimants turn up for their appointments. The rep said that the person should attend the centre at the time booked and wait for the accessible room to become available if she wanted to continue with the claim (see picture 3 for waiting room).

This is a clear example of centres adding needless stress to an already daunting process.

2. Overbooking of Assessment Centres

We have identified that assessment centres appear to have moved in the last 24 months to a model that we compare to budget airline bookings, ie, they are overbooking appointments in the assumption that some people will not turn up. This was confirmed by one of the assessors who told us that she had 20 assessments on her list per shift, but that she could only reasonably do 6 in the time available. This means that a number of our service users are seeing last minute cancellations by the assessment centres – sometimes while they are en route or just as they are getting ready to leave. This is clearly distressing for people who have prepared for the assessment and may already have faced a lengthy wait to get to this point. For those who do get to the assessment centre we have seen long waits at the centres causing distress and anxiety for our service users. For example, we have had people vomiting at the centre due to anxiety over the wait.

Practical issues also arise such as people unable to take their medication or having difficulty with childcare arrangements.

Case Study 2 – Long Wait results in Cancelled Assessment

A mother of a toddler had had to change her initial assessment as she had no one to go with. When she re-booked her assessment[20] she made it clear that she would only be able to attend with support as she suffers from pain, exhaustion and panic attacks.

Despite this, when she arrived for her assessment, she waited from 1.30pm until 3.55pm. Her booked appointment time was at 1.45pm. During the wait she kept asking the receptionist how long she would have to wait and kept being told she was next. She was with a friend, but struggling with exhaustion and the seating was uncomfortable. She has fibromyalgia and sores, so the long wait on uncomfortable seating caused significant pain and distress.

When she was finally called in she had almost no time left as she had to collect her child from nursery, as no one else was available to pick them up.

She was told to come back for an assessment on another day, which was eventually booked 2 months later. She felt that the wait and cancellation had caused her stress and exhaustion, she hadn't slept for days in anticipation, and she subsequently became ill too.

3. Inaccurate Assessments

PIP works on a points system[21] and at Merton CIL we are witnessing a growing number of assessments where people are being assessed as having zero or very few points at assessment, which is later overturned in tribunal. In a number of cases, people felt their assessment reports were so far removed from their situation and what had been discussed at the assessment itself, that they thought their details had been mixed up with someone else. Assessments for people with mental health needs or for people with fluctuating conditions seem particularly poorly done. Our observations about inaccurate assessments is backed up by the NAO report which highlights that only 13% of PIP and ESA assessment reports reached the necessary standard. [22]

Despite these known issues, in some cases our advocates have been stopped from taking notes during the assessment or stopped from asking the person clarifying questions when they feel an issue hasn’t been properly explored, in contravention of DWP guidelines[23]. In one case the Disabled person said they had felt very uncomfortable throughout the assessment and that they had been frightened of the assessor who they felt had spoken to the advocate in an aggressive manner. They person felt they had not been listened to and in fact were denied the benefit, which on appeal was overturned and they were awarded PIP. In another case, a former DLA recipient was denied PIP despite having cancer, diabetes, physical impairments and a home resuscitation kit to help manage their health. We supported the person through Tribunal and they got the enhanced rate for both components of the benefit and the Tribunal recommended the award was given for 5 years.

Case Study 3 - One point to 28 points

A local Disabled mum was referred to Merton CIL support with an upcoming appeal PIP claim. Following the initial claim and mandatory reconsideration, she had been awarded just 1 point and was told she was not eligible. This was despite the fact that she lives with bipolar disorder, depression and borderline personality disorder. Her day-to-day   challenges mean that she does not leave her home, answer her phone or read her post. She does not eat, cook, wash or change her clothing regularly due to her depression. She has to be supported to take medication and maintain her health, and she is unable to manage her         finances.

The tribunal judges over-turned the original DWP decision and awarded 28 points and the enhanced rate for both daily living and mobility components of the benefit.

Case Study 4: The knock-on effect of changing from DLA to PIP

Mo got in touch for support with a benefits Health Assessment for PIP, having previously had DLA. Normally we offer people one or two sessions to prepare them for a Health Assessment so that they know what to expect, and we go along to the Health Assessment with them. When Mo got in touch with us before the assessment, we were fully booked. What we did do was explain his right to ask for an assessment closer to home – he had been told to go to Barking – and we signposted him to some guidance, which we also posted to him.

We stayed in touch with Mo and following the Health Assessment, Mo let us know that he was awarded PIP but only for the Daily Living component and not for the Mobility component. He said the assessor hadn’t given him time to explain the impact of his different impairments properly, and had prevented his friend, who went with him, from making any notes. The decision was a real cause for concern for Mo because under DLA he had been entitled to the Mobility component and had used that money to lease an adapted car under the Motability scheme. Mo’s disability had not changed, but the benefit had. Now Mo was in a situation where he was no longer entitled to lease his adapted car, and was going to be forced to return it. He used that car to get to work, and Mo wasn’t sure how he would get to work without it.

We supported Mo through the Mandatory Reconsideration process. The DWP decided to uphold their initial decision, so Mo went to appeal. This was a difficult decision for Mo because at tribunal, there is always the possibility that the whole award will be looked at again, and there is the risk that the award will be reduced or refused altogether, as well as the possibility of getting a higher award, which Mo was asking for. However, Mo felt that he had been unfairly assessed so he went ahead with the appeal. We supported Mo with a preparation session to go through what he could expect at the Tribunal, and we supported Mo to speak up at the Tribunal. The Tribunal found that Mo was eligible for the Mobility component at the standard rate. This outcome meant that Mo was not entitled to re-access the Motability scheme, but was entitled to access a range of other benefits such as Blue Badge and Freedom Pass, as well as seeing his award increase by £22 a week. Because of the long gap (about 7 months) between having his entitlement removed and it being reinstated, Mo had already had to leave the Motability scheme as there was a 7-week window in which you have to either hand back, or buy the leased car (this was extended to 26 weeks in April 2017). Following our advice around the Motability Transfer package, Mo was able to buy the car outright, rather than losing it. Now Mo is sorting out his road tax liability, which had been affected by the loss and reinstatement of his benefit.

In Conclusion – Significant Risk Factors for Disabled Merton Residents

There is a growing body of evidence indicating that the very process of forcing Disabled people to undergo an assessment is damaging to their wellbeing. Many Disabled people are not only being assessed for PIP, but also for Employment Support Allowance (ESA) and for Social Care, and in many instances being reassessed annually and, in the words of one of our service users, “being asked to prove I am needy enough all the time”. In one example, we supported a man at a PIP assessment[24] which was quite lengthy because of the range of issues being discussed. During the assessment, he needed to take numerous breaks as he felt a seizure may be coming on. At the end of the assessment it was our advocate who had to accompany him home (something we don’t typically do) as we were so worried about his health.

In several other examples, people have told us about how they feel disbelieved and how they feel they are being accused of being liars following assessments. This is backed up by recent press coverage highlighting how negative the assessment experience can be.[25],[26]

Sadly, our experience is by no means unique. Discussions at the Merton Health and Social Care Forum make it clear that other support agencies are seeing the same issues arising for the people they are supporting. This shared experience is further verified by recent national reports on PIP by Inclusion London[27] and Citizens Advice.[28]

However, while the aims of PIP, and the eligibility criteria are national issues, we can challenge problems with the local experience and implementation of PIP in order to get a better and more accurate assessment process for local Disabled people. This is important because of the negative affect the PIP assessment process is having on Disabled people financially, and in terms of their wellbeing. It is important also because of the sheer numbers involved.

Suggestions for Next Steps

1)      Establish the reasons for a significantly higher number of Merton residents being denied PIP in the changeover from DLA

2)      Establish the full financial impact of the loss of PIP/DLA

3)      Inspect Assessment Centres and insist on local and accessible assessments for local people

4)      Challenge the practice of overbooking at Assessment Centres

5)      Investigate the quality of local assessments and whether they are fit for purpose

Picture 1 – Assessment centre on unmarked entrance on private road

PIP Consultation Centre, Unit 4 & 5 Ground Floor, The Filaments, Buckhold Road, London SW18 4AT

Picture 2 – Map showing distance between centre and parking

PIP Consultation Centre, Unit 4 & 5 Ground Floor, The Filaments, Buckhold Road, London SW18 4AT

Picture 3 – Small and uncomfortable waiting room

Synergy Centre, 1D Church Road, Croydon, CR0 1SG

November 2017