The wait for disability benefit and the impact of being declined: Tales from the London foodbank and beyond

The existence of  a massive  waiting list for decisions on Personal Independence Payments (PIP) and accounts of long waits faced by individuals is becoming better known. The Department for Work and Pensions (DWP) says this social security payment is designed to ‘help with some of the extra costs caused by long-term ill-health or a disability’ for those aged between 16 and 64. According to DWP figures, of the 529,400 cases registered for PIP between April 2013 and the end of July this year,  just over 206,000 have been cleared (awarded, declined or withdrawn).

Yesterday in the House of Commons Mark Harper the current Minster of State for Disabled People said that by the end of the year no-one would be waiting for longer than 16 weeks for a PIP decision.

How deliverable is this, given the scale of the fiasco?

Statistics capture one aspect of  the saga, of course. But they do not show how long people are waiting within this 16 month period. Mark Harper has said: ‘The delays faced by some people are unacceptable and we are committed to putting that right’. According to an article in the Guardian here, the figures show that 51 per cent of new claimants had been awarded PIP, and it had been granted in 72 per cent of reassessment cases to people previously in receipt of Disability Living Allowance (the benefit that has been replaced by PIP for all new claimants).

But what about the day-to-day lives and feelings of the people caught up in this catastrophe, many of whom have been waiting eight months and longer for that life-changing letter to drop through the post? Also, what happens when that long-awaited decision turns out to be a ‘no’?

One of the worst cases – reported on the Same Difference blog and elsewhere –  involved Lyn Ward, who applied for PIP after she was diagnosed with breast cancer. In March this year she was still waiting for help  – 11 months after applying for this help and having undergone an operation to remove the tumour, her lymph nodes, a mastectomy, chemotherapy and radiotherapy. While PIP itself is not a means-tested benefit, finances were so tight that the delay forced Lyn to go back to work just days after completing her radiotherapy.

It’s worth stating the unavoidably obvious fact that people who apply for PIP are some of the poorest people in society – those with long-term ill-health and disabilities that more often than not impact on their ability to work. The ill-health can be physical, mental or a combination of both. Richard Hawkes, the chief executive of disability charity Scope, is quoted in the Guardian article saying that ‘Scope’s helpline has been inundated with disabled people phoning for advice on their PIP claim, and many are facing extreme delays of well over six months’.

Recently at this London food bank, I spoke to Theresa (not her real name),  who has recently been diagnosed with borderline personality disorder (BPD), which can make people at risk of self harm and suicidal behaviour. Theresa, a single person,  told me that her experiences while on Workfare – working for no pay while in receipt of jobseeker’s allowance (JSA) – had driven her to take an overdose. Now on the waiting list for specialist counselling, she has just filled in the forms to apply for PIP. But she has no idea at this stage how long it will be before she hears if her application has been successful. Even if it is successful she has no idea how much she’s likely to receive. Applicants could get between £21.55 and £138.05 a week, depending on how their health needs have been assessed – ie how many points they accrue. If she’s turned down for the payment she faces the decision of whether to go down the route of a mandatory reconsideration and if that’s not successful then an appeal to an independent panel. This would  – and again it merits hammering home  –  be particularly stressful in her circumstances.

I’ll be keeping in touch with Theresa to find the outcome of the decision and to keep track of how long it takes to come through. In the meantime, she is trying to survive and pay all bills including rent on her employment and support allowance (ESA) payment of £140.80 a fortnight – a challenge that has driven her to ask for support from the food bank.

Amy (not her real name) is 29 and lives in Sheffield. She’s had an extended wait for a decision on a PIP application. Her circumstances are slightly different to Theresa’s – but she like Theresa is struggling daily with the impact of  serious mental health issues. She lives with her 35-year-old partner in a rented flat, and her mental health issues include, but are not limited to, anxiety, agoraphobia and hearing voices. She has previously had to spend time in hospital. Amy’s partner had been a full-time student, but ended up working during the day and staying up all night to finish his dissertation. Her partner currently earns £16,000 a  year, and they both depend on his income. He is hoping that his contract-based job is extended from this December. Their rent of £440 a month is paid to a private landlord. She says their situation, though hard, would be worse if they lived somewhere like London where private rents are much higher. The couple, who have no children, receive no benefits. I’ve suggested she and her partner immediately get some advice on whether he can apply for Working Tax Credit – worth up to £1,940 a year –  based on the level of  his income. A useful benefits calculator is here.

She applied for PIP in March, and she was helped to do this by her mental health home treatment team, whom she says give her good support. She also has a social worker. She supplied medical evidence, including a report from her psychiatrist. There was an eight month wait, then the decision came two weeks ago – her application was turned down. Her mental health team had thought that she might only get the lowest rate of just over £20 a week – but even that lowest level of PIP would have covered her food bill of £15 to £20  for the week. Amy eats a vegan diet and is skilled at making a little bit of food go a long way. Her partner has a lot of food allergies, so she uses a lot of tinned vegetables and cooks from fresh when she feels able enough to do that. They couldn’t afford ready meals, even if he was able to eat them.

But the decision to reject her application was devastating. She says that if she’d got the money – and particularly if it had been backdated – she could have used it to pay for the tiny extras for herself or someone else that might make the occasional difference between existing and living. Not that she goes out much, being agoraphobic. But the extra bit of cash might have paid for the odd trip to swim at the local leisure centre – which she used to find relaxing. It might also pay for a birthday present or a card for someone. She likes cooking and said a few extra pounds a week might also give her the chance to risk trying out one or two different things. She can’t risk experimenting when she cooks at the moment, because when you’re on the sort of budget she’s on, you can’t afford even one mistake.

Before she got ill, Amy worked as a cleaner. She had been able to put aside some savings during that time, but by the start of this year that money had run out. ‘I thought – I don’t want to be a burden. I think it precipitated me into being very unwell, which is why mental health services helped me apply for PIP. They recognised that the financial worries were making me more unwell. I think they (the DWP) do want to put people off applying by making people wait too long.’

I asked her if she’s going to request a mandatory reconsideration of the decision, which would potentially lead her to an independent panel appeal. But she says that she won’t do this. ‘Most claims go to appeal and I can’t face the stress of  it being turned down. My partner says he’d rather we scraped through than for me to get ill again. I feel the risk wouldn’t be worth it. I know that I do very badly under stress. The worry about going back to hospital outweighs any benefit that money would bring.’

She added: ‘The system can make you more unwell. What they try to save by not giving me £20 a week makes me ill and anxious. They are not saving any money overall. Social care costs more than benefits would cost.’

 

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Kestna’s #WCA and other reasons not to be cheerful

 

Kestna Marsh is disabled. He was forced to the foodbank after a tribunal upheld a  DWP decision to stop his benefit.
Kestna Marsh is disabled. He was forced to the foodbank after a tribunal upheld a DWP decision to stop his benefit.

Kestna Marsh was 62 this week. At the moment he probably feels he has little cause for celebration.

This former construction worker struggles to walk  as he has arthritis in his right knee,  left leg and left shoulder.  He can’t lift anything with his left arm. On the day he came into this London food bank with his voucher, his mobility was obviously restricted and he struggled with his walking stick  to move from room to room. Because of his mobility issues I felt hesitant about asking him to move even a few steps into a quieter room. Kestna walked that distance because he wanted to share his experience of Work Capability Assessment (WCA).

He was left without the money to buy adequate food after a tribunal hearing at the beginning of  last month (September) upheld the outcome  of his 2013 face-to-face ATOS WCA. He attended the tribunal on his own, without the support of a legal or welfare expert, and there were two people on the panel – a doctor and a solicitor.  The WCA awarded him zero points for his health issues, and Kestna immediately challenged this. But following the outcome of the appeal his employment and support allowance (ESA) claim was closed on September 13th. He thinks that as a result he ceased getting housing benefit on the same date. He now has to reapply for housing benefit. He’s been told by Jobcentre Plus to apply for Jobseeker’s Allowance (JSA), but he says he has been told by Jobcentre Plus that any claim for JSA wouldn’t be processed until October 17th.

He explains here how his health problems affect his life and how he feels about losing his tribunal appeal (apologies for the unconventional presentation of the video – camera operator in training!).

His Disability Living Allowance (DLA) of about £215 is paid monthly, but the payment in mid-September of about £50 a week has gone mainly on bills. What about food?  “I’ve been eating salad, beans, cheese and the odd sandwich here and there. I can’t do a proper food shop. If you gave me stuff to cook my gas is more or less onto nil. I haven’t got a penny to my name.”

Kestna added: “They expect me to go back to work. They’ve told me that if another illness emerges then I can apply for ESA again. Since my original assessment (in 2013) my problems have got worse. I can’t use a computer and I can’t sit too much or walk too far for too long. What sort of job do they expect me to do? I previously worked in construction and I know that for me to sit in an office would require retraining.”

The serious difficulties he faces because of his obvious ill-health and the stopping of his ESA are compounded by his council housing situation and the difficulties in building up a relationship with a GP at his new surgery who can get to know him properly.

He lives on his own, and has recently moved from one part of the Royal Borough of Greenwich  to another. He wanted to move to a ground floor flat, so he was offered one. But this new flat hasn’t been adapted to meet his mobility needs, so he is not entitled to the rent rebate that would accompany such an adaptation. He says that because the council moved him into a two bedroom flat instead of the one bedroom flat he wanted, the council has classed the flat as under-occupied. So because he’s been deemed as having an extra room, he’s having to pay an extra £12 a week towards the bedroom tax – for a flat that hasn’t even been adapted to meet his physical needs.

Kestna also says that there is apparently some discrepancy arising from his move from another flat in the borough, meaning that the council may have been paying him housing benefit for both flats. He also has council tax arrears of £112.

He left the food bank with contact details for welfare and housing rights experts.

He also left promising that he would make an appointment with his GP. “I’ve just moved into the area, so I don’t have a relationship with the GP yet. I must have had at least four or five appointments with different doctors.”

How did the tribunal decision leave him feeling? “I was really angry. I’ve never been through the food bank stuff. I always stuck to relying on my doctor. I got the certificate and sent it in on time. To find that they closed my claim without even informing me they were doing it, in my circumstances –  I feel quite disgusted really.”

Many thanks to Kestna for speaking up.

 

 

 

Life after #Atos: Good news for Deborah

Life after #Atos: Good news for Deborah
Deborah successfully challenges the decision by #Atos to deem her 'fit for work'.
Deborah successfully challenges the decision by #Atos to deem her ‘fit for work’.

What a difference a couple of days can make. Last week Deborah came into this London Trussell Trust food bank in despair . She ‘d had  a face-to-face Atos work capability assessment (WCA) back in June, and despite her multiple chronic health problems, she was awarded zero points. This meant that from July 24 this year, she lost her employment and support allowance (ESA). This single parent of 51 – with one of her four children still at school and a dependent – was forced to accept a voucher for the food bank from a social worker.

By last Friday, things had improved massively. Deborah came into the Greenwich food bank to tell us that her application for a mandatory reconsideration has been successful. Following this review of  her health issues and the original assessment, she’s now been awarded 18 points (she needed 15 to remain entitled to ESA).  Deborah believes that an intervention made by an NHS psychologist  who became aware of her difficulties has made a difference. That person  worked with her GP to supply more information about the impact of her many health difficulties on her ability to work.

This is of course a very positive development. But a key puzzle remains unanswered. How did Deborah end up with no points first time round, given the range and complexity of her health conditions? These include arthritis in the lower spine, hips, neck and knees, congenital heart problems, Irritable Bowel Syndrome and long-term depression. Deborah described being having to be helped on and off the couch at the WCA by a health service professional that she assumed was a doctor. She says she was in pain throughout the assessment. In the written assessment that person claimed Deborah had no problems getting on and off the couch and wasn’t in pain. There was also the strange matter of the coat. Deborah says her assessment referred to her being able to take her coat on and off. But she insists she was not wearing a coat that day.

Isn’t Deborah’s case an example if one more were needed of just how slapdash (at best) and unfit for purpose the WCA process has become? Yes, the original decision may have been revised. She will now get ESA again, but she is waiting to see if that will be backdated from late July. She has been placed in the Work Related Activity Group (WRAG) for 18 months from 24 July 2014. Deborah was ‘luckier’ than some – she still had some money coming in during this time – her disability living allowance (DLA). Her sister was also able to keep an eye on her for a few weeks.

But this wasn’t enough of a safety net to stop her from needing emergency food aid, with all that this involves for someone with depression and in  poor  physical health.

The new system of mandatory reconsideration before appeals introduced in October 2013 seemed to pick up the flaws in Deborah’s assessment. It may be the case that the drop by 92% in ESA appeals in April to June 2014 is mostly down to changes of decision in favour of  prospective appellants. But we don’t yet have the figures to show how many reconsiderations result in changed decisions.

People like Deborah appear to be having to wait for six to eight weeks – maybe this is ‘fast’ – do you know better? – for the outcome of mandatory reviews. If the review outcome leads to the decision being overturned,  it looks like they spend a minimum of  six to eight weeks without the benefit they depend on. If the review is unsuccessful then how long they are languishing and at what cost? We know only too well what can happen when the benefits of the chronically ill are stopped. In Deborah’s case she lost her benefit because of a failed ‘fit for work’ test. David Clapson, a former soldier, died after he lost his JSA as a result of a sanction. But the effect on people’s lives is the same – access to the means of survival is vastly reduced temporarily or completely blocked permanently. ‘Lucky’ Deborah had a social work who became involved and offered a food bank voucher. The psychologist and Deborah’s GP liaised to provide health information that appears to have made the difference. However the evidence suggests that many others are too vulnerable by this stage to fight on for their benefits or to access basic means of survival – such as a food bank voucher .

As the author of this Guardian article about David Clapson points out, ‘I’ll resist calling Clapson’s death a tragedy. Tragedy suggests a one-off incident, a rarity that couldn’t be prevented. What was done to Clapson – and it was done, not something that simply happened – is a particularly horrific example of what has, almost silently, turned into a widespread crisis. More than a million people in this country have had their benefits stopped over the past year. Sanctions against chronically ill and disabled people have risen by 580% in a year. This is a system out of control.’

Some advice on WCA assessments has been offered by readers. Welfare rights consultant Jim Strang reminds those going through the process that they can inform the assessor that they would like their assessment recorded. This should be requested in advance. He adds that anyone whose ESA is stopped can also make a fresh claim for housing benefit, based on income.

Paul Trembath says that those who go ahead with an ESA appeal following mandatory reconsideration (and the Department for Work and Pensions have had confirmation from the Tribunals Service) can ask for ESA to be paid again even if they are claiming JSA – ‘they have to ask, the DWP will not suggest’.

Many thanks to Jim and Paul for their advice – and a big thanks to Deborah for speaking out.