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for PIP between April 2013 and the end of July this year,  just over 206,000 have been cleared (awarded, declined or withdrawn).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72 per cent of reassessment cases to people previously in receipt of Disability Living Allowance (the benefit that has been replaced by PIP for all new claimants).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.’

 

Gina is chased for a £732 working tax credit ‘debt’: ‘It’s another form of sanction’

Gina is chased for a £732 working tax credit  ‘debt’: ‘It’s another form of sanction’

Gina Lomax says it is "immoral" that she has been told to pay back £732 in working tax credit.
Gina Loxam says it is “immoral” that she has been told to pay back £732 in working tax credit.
When is a debt not a debt? When it’s £732 that the government says is now owed by Gina Loxam in Working Tax Credit (WTC).

Gina, a single woman of 58 from the north-west of England, had been on WTC – a means tested payment for those in low-paid work – including self-employed people. It’s paid by HM Revenue and Customs (HMRC). Unfortunately Gina, who lost her beloved pet shop business in the recession, became very ill with depression. Following an assessment by ATOS, she was placed on employment and support allowance (ESA) in the work-related activity group. Because she was receiving WTC, this amount was deducted from her ESA to ensure she only got £100 per week.

She did her WTC return only to discover she was no longer entitled to it after 28 weeks off sick. She has now been told that she owes HMRC £732. ESA will not back date their reduced underpayments to cover this, saying she should have informed WTC directly when she went onto ESA. Gina says of this demand from the HMRC: “I was in no fit state to even feed myself let alone notify loads of different departments of my current status. I am now left with a debt of £732 for money I never received off the ESA. This is morally wrong and theft. Apparently this is happening to a lot of people on WTC who went onto ESA. Why are these departments not liaising and ensuring the claimants are aware of the rules? This is another way of sanctioning the vunerable.”

Gina wants the ESA to backdate her full benefit to the date the WTC ceased so that she can pay the WTC back from the reimbursed ESA underpayments. She adds: “I also want to raise awareness of how immoral this whole situation is. I am not asking for anything I was not entitled too. If I have to pay this back, it means I would have been only receiving £47 for three months instead of £100. It boils down to theft of benefits.”

She says of people who are ill and in her situation: “It’s ridiculous to have a debt you don’t really owe because you were underpaid ESA. How many people have been affected by this? It’s another form of sanction. I have worked all my life and to be in this position is abhorrent. I’ve written a letter to the HMRC telling them I can’t pay.”

Gina wrote to her local MP, Conservative David Morris, for help. He replied: “There is no scope for discretion within the law relating to Social Security, and that is something which we must all accept as fact, regardless of whether or not we agree with it. It has long been intrinsic within Social Security Legislation that the onus of responsibility to provide accurate information, details and documentation both at the outset of a claim, and at all stages thereafter, rests with the claimant. This would include therefore, reporting change of circumstances. The regulations say that it is your duty to report any change in your circumstances which you might be reasonably expected to know could affect your right to, the amount of, or the payment of, your benefits.
This is Regulation 32(1A) and (1B) of the Social Security (Claims and Payments) Regulations 1987. It is not the responsibility of any individual or Government Department to notify someone either that they are eligible to claim a particular benefit, or to take action on an assumption of a change of circumstances. If you fail to disclose a material fact which affects your entitlement, (whether unintentional or otherwise) then an overpayment will be deemed to have occurred. Such overpayments are then generally recoverable.”

She wrote back to Mr Morris telling him that she did not receive an overpayment. “The Government can’t have it both ways. I was underpaid my ESA. If I had been getting the full benefit for WTC and ESA I would have been overpaid. But this is not an overpayment as I did not get my full ESA entitlement! I don’t even want the money paid back to me but to go direct to HMRC clearing my ‘debt’. An inter department transfer.”. She continued: “The whole situation is theft and a sanction. I am sure you would not be happy if you were expected to lose seven weeks of your salary due to an honest mistake.”

Gina wants to know how many people have been affected by this issue. She added: “It’s just immoral. It’s a secret sanction. They’re not telling people what they need to do, yet they are very quick to penalize people for not doing it. I was bouncing back (from depression), but I’m not now. I’m worrying about money I’ve lost that I should have had. I’m not going to pay this. I refuse.”

She points out that when she applied for ESA she had to note on the claim form which benefits she was claiming and that she listed WTC. “So they would have had that information, they knew I was on it. Why wasn’t that automatically flagged on the system once I’d been on ESA for more than 28 weeks? The DWP should automatically send out a letter after 28 weeks to those on WTC informing them that they are now going to get full ESA and they will either inform WTC or you have to. Simple.”

Thanks to Gina for flagging up this issue. Please get in touch if you have had similar problems with WTC and ESA.

Inequality, one London church and the impact of universal credit

kings church exterior
In case you’ve forgotten, London is one of the wealthiest cities on earth, the capital of one of the world’s richest countries. Only a few weeks ago Prime Minister David Cameron told us: “We are a wealthy country.” Let’s take a walk down one street in south-east London, call into a church, and see how effectively all this wealth is trickling down.

It’s not dropping into the laps of the large crowd of people packed into King’s church in Catford on a Wednesday night. There’s a hundred or so sitting around tables (and on some Wednesdays there are 150 people). They’re there for companionship, support with their problems, and a free three course meal. There’s a warm, welcoming buzz, and it’s definitely not just food that’s on offer at this truly wonderful project. They get access to a wide range of help – anything from debt advice to counselling and support with mental health and addiction issues. They can also volunteer to help out with the meal. Many are here tonight preparing food, cooking, serving, clearing up and chatting to diners. People also get support with looking for paid work.

Fundamentally, it’s about providing a community for adults of all ages who feel marginalised by politicians and by society and showing them that they belong – that they are valued for who they are and not what they do or don’t earn. It offers them a firm place in the world. This project wants to empower people to have functioning lives.

The church prioritises helping rough sleepers. There were 16 of them here last week, and this winter the church has had more rough sleepers than ever before. The rough sleepers were heading to a car park in Catford that night. The upward trend in the number of rough sleepers locally reflects the national picture. An estimated 2,414 people were sleeping rough in England on any one night in 2013, an increase of 37 per cent on 2010.

The project also provides 24 (soon to go up to 31)spaces in low support housing at a reasonable rent, and draws up care plans to help individuals find work. It also helps people address health issues and supports those fighting appeals against decisions to withdraw benefits such as employment and support allowance (ESA).

Low support housing (c) King’s Church London

Marvellous work is going on here, and despite the horrendous pressures on the local Labour-led authority’s (Lewisham’s ) budgets, it is working hard to forge connections with the King’s Church project. On Thursday morning one of the project’s key co-ordinators Simon Allen was due to meet with the council to discuss the rough sleeping issue and how to get the large group of people sleeping rough in Catford off the streets.

Simon, who talked to me at length last week, couldn’t be more gentle towards, and supportive of, the people who come along here. But he’s angry about the way current Coalition polices including the reinvention of the benefits system are impacting on the least well off. Benefit stoppages are “horrendous”, he says – telling me about one man at tonight’s meal whose benefits have been completely stopped.”He’s been without benefits for about six months. These are the most vulnerable people in society and since the stoppage he has spent a month in a mental health unit and a month in prison.”

He can’t believe that people with mental health issues who are challenging decisions to withdraw ESA are being assessed by people with no knowledge of mental health. The project team helps such clients with the appeal process and wins most cases.

The project has a problem if people are dependent on the Wednesday night meal alone. “I don’t want people to be dependent. Our key philosophy is that everyone who comes here can contribute. People can come here and help out.” He recommends a book outlining his church’s approach to social action. “The book’s called Toxic Charity, and it’s an essential read. You can keep people in their poverty or you can treat them as powerful. It’s about building community, friendship, relationship and connection. It includes a sense of hope.”

Simon is “a little cautious” about the food bank model of providing help, which he sees as meeting people’s immediate needs but not able to lift them out of poverty. “It’s all very well going to a food bank and getting a parcel for a few weeks (clients are only meant to use a Trussell Trust food bank a maximum of three times), but we have some people here who have been without benefit for six months.” He believes the holistic model based around community and friendship, and the project’s “fantastic” working connections with the local authority makes it ultimately a more sustainable long-term approach.

Let’s be clear: the Trussell Trust itself says that food banks aren’t a sustainable response to food poverty. Back at the London food bank, the manager Alan reminds me that “most of the people who come to us are referred by people who should be providing mainstream help. If we start providing mainstream help it gives them no urgency to solve the problem. There’s also the issue of individual’s motivation. Where’s the motivation to drive a solution from their point of view?”

Alan also believes that something of a myth is circulating about people becoming “dependent” on food banks. “We see nine out of 10 people on three or fewer occasions.” The few he sees more than that are mostly experiencing very exceptional circumstances.

Undoubtedly, this debate about the longer-term role and strategic direction of food banks is going to intensify here in London and elsewhere as more and more people are forced to use them. A London Assembly Labour report by member Fiona Twycross quoted food bank use in London as having increased by 393 per cent in the past two years. It said that in 2011 there were 12,839 visits to food banks in London, increasing to 63,367 in the first nine months of the current financial year – including 24,500 children. The expanding chasm between rich and poor in London is starting to echo that world painted so vividly by Charles Dickens. Who would have thought it?

Simon is particularly furious about the planned move towards Universal Credit (UC), which he predicts will have a terrible impact on those with the most complex problems. UC is the new single payment for people looking for work or on a low income. It will replace housing benefit, income based jobseeker’s allowance (JSA), income related ESA, income support, child tax credits and working tax credits.

The new payment, which will be paid monthly direct to the claimant and will include support for housing costs, will be an unmitigated disaster for many, particularly those with alcohol and gambling addictions, says Simon: “Some people will be given figures such as £1,500 a month in their pockets. We’ve got one man here who is a gambler who is almost crying and saying he doesn’t want this. Why are they obsessed with paying people monthly?.”

He’s approached the DWP about this issue, and they’ve tried to reassure him by telling him about something called “jamjar accounts”, which are starting to emerge as a way of allowing people to ring-fence money to pay specific bills such as gas and electricity. “The DWP also says they will have advisers who will come out and help people. Are there really going to be hundreds of thousands of advisers giving advice to people they don’t know?”

This experienced person sees the evolving system as a disaster starting to unfold. I’ll be returning to the project over the next few weeks to find out more about the individuals involved and how their lives are being affected by the apparent dismantling of the welfare state in London.