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for PIP between April 2013 and the end of July this year,  just over 206,000 have been cleared (awarded, declined or withdrawn).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72 per cent of reassessment cases to people previously in receipt of Disability Living Allowance (the benefit that has been replaced by PIP for all new claimants).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

 

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.

 

 

 

Bone marrow transplant patient could lose her Motability car under DWP rules

“Lesley” is petrified. She needs a bone marrow transplant at the end of this month. Trying to deal with Myelodysplasia – a serious blood disorder that causes a drop in the number of healthy blood cells – is tough enough already, and she is very anxious about the transplant. But now she’s worried she’ll lose her Motability vehicle at the very time she needs it most. The decision by the Department for Work and Pensions (DWP) to stop paying the mobility component of the Disability Living Allowance (DLA) or Personal Independence Payment (PIP) to the Motability Scheme when people end up in hospital for more than 28 days has added an extra level of concern.

The 47-year-old divorcee depends on the leased car for her 40-mile round trip to the NHS centre of excellence where she’s being treated. She expects to be in hospital for four to six weeks post-transplant. She has also been told by the hospital that she could be in again after that frequently as an inpatient and will have three visits a week as an outpatient. She’s advised that using public transport poses an infection risk post-transplant. She is unable to rely on family and friends who are at work for lifts, and can’t afford taxis.

The DWP tells people in receipt of DLA to let them know when they first go into hospital, and to tell them once they are discharged. They are then told to supply details of any subsequent inpatient stays. But “Lesley” says this just “adds to the stress when I just want to move on with my life – they are just putting obstacles in my way”.

She says Motability has been sympathetic to her circumstances and has said she can keep the car for a couple of months if DWP payments to Motability on her behalf are cancelled. But with the prospect of being in and out of hospital on the horizon for some time, she’s concerned that a possible pattern of stop-start payments may not be triggered quickly enough to ensure that the car is available when she desperately needs it. She believes that those with the most serious illnesses who have to spend longer in hospital risk losing out most under this change, which began in April 2013. “If I wasn’t very ill I would continue to get it (the mobility component), but because I am very ill, I don’t get it. In all the literature I am advised to not use public transport due to infection risk. How then would I get to hospital?”

Following the transplant her immune system is going to be “wiped out completely”. “If I travel (on public transport) with someone with a cold and I catch it, that would be extremely bad news – really dangerous. Getting public transport could effectively kill me yet I may be left with no choice. I have had to think long and hard about this transplant. All my family and friends work and I’m single, so cannot rely on others. It’s scaring me as it’s a dangerous procedure anyway and then I could catch a cold virus or infection from someone and die because I don’t have my own clean safe transport. The decision to change the rules in 2013 was a ludicrous one. Also I wasn’t warned about it when I started the car scheme. Suspending and reinstating the mobility component must cost a fortune in administration.”

There are two organisations which work closely together to deliver the Motability Scheme. They are Motability, a registered charity, responsible for oversight and Scheme policy, and Motability Operations Ltd, a not-for-profit private company that operates the Scheme under contract to Motability. A spokesman for Motability said in a statement: “To lease a car, scooter or powered wheelchair through the Motability Scheme, an individual must be in receipt of the Higher Rate Mobility Component of the DLA, or the Enhanced Rate of the Mobility Component of PIP. Motability has no role in determining who should receive disability benefits – that is solely the responsibility of the Department for Work and Pensions (DWP). In general, the DWP do not make payments of DLA care and mobility components after a disabled person has been in hospital for 28 days or more (84 days for children under 16). Payments resume once the disabled person comes out of hospital. From April 2013 onwards, the DWP has started to treat all hospital inpatients in the same way, whether they have a Motability vehicle or not. This means that if a customer spends more than 28 days in hospital, the DWP will stop paying the mobility component of the DLA/PIP to the Motability Scheme.”

The statement adds: “As soon as customers are admitted to hospital, they should notify the DWP of their change in circumstance. For hospital stays of more than 28 days, they or somebody acting on their behalf should contact Motability’s Customer Services Team on 0300 456 4566 to discuss their individual circumstances. Depending on the expected length of their hospital stay and, of course, their own preferences, we will discuss appropriate arrangements with them. Since this change was made by the DWP in April 2013, we have been contacted by a number of customers in this situation and have been able to leave cars with them in the expectation that they will come out of hospital and have their allowance reinstated by the DWP within a reasonable period.”

The DWP was approached for information about the cost of administering the change and the savings made since the change was implemented. It was asked how many disabled people had been affected after stays in hospital and if any cost/benefit analysis had been undertaken prior to the change. It was also asked if any challenges or complaints had been received, and whether there was a legislative basis for the change. No reply has been received to date.

Motability’s flexible and understanding approach to individuals affected by this change is admirable – but what happens if the person is unfortunate enough to need a series of extended hospital stays and the DWP isn’t paying for the car? The uncertainty involved isn’t making “Lesley’s” life any less stressful. Also, for how long will Motability continue take the financial hit as it strives to do the right thing?