It’s just gone 5am and Ray* is awake again. He emails me to tell me, on a laptop he’s been loaned by his local HIV charity. He’s been getting up in the night a lot over the past few weeks, thinking about money and feeling a thump in his head. His benefits, one after one, are disappearing and no one is listening.
“This past few weeks, months has made so feel so ill,” Ray writes. “The feelings in my head and body from not knowing how the hell I’m going to pay the bills or if I’m going to lose my home, the little home I love and feel safe in… Yet feeling like scum in the way this Government has and is treating me.”
Ray has mental health problems and, in addition to having HIV, is diabetic and insulin dependent. He’s unable to work and, at 47, pieces together a small income from disability benefits and help with his rent and council tax.
As the Government’s shrinking of the welfare budget kicks in this month, he’s watching as each part of that help is being withdrawn.
“I feel as I am being hit from all sides,” Ray says when we speak again. “Yet [there’s] nothing I can do.”
He is one of thousands of people with disabilities or long term sickness who, from this month, are being affected by multiple, simultaneous cuts. Disabled people often rely on a variety of different benefits and services and, as the welfare state undergoes its fundamental change, are as such being hit again and again and again.
The "bedroom tax" means Ray has now lost 14 per cent of his housing benefit for living in his two bed house. At the same time, cuts in support for council tax mean that poverty no longer exempts him from having to pay. He’s already lost nearly £50 per month.
“That’s one hell of a percentage out of my meagre monthly income,” he tells me. “I don’t know how I’m going to manage it.”
Ray is already in debt after his Incapacity Benefit, the outgoing benefit for people who cannot work due to a health condition or disability, was stopped last September and he was rejected for its replacement (Employment and Support Allowance). He tells me a social worker spent twenty minutes on his application for the new benefit and after being assessed by Atos, he was found fit for work. His benefits were suspended entirely for six weeks and it’s against this back-drop of debt and worry that the other cuts hit.
Ray’s depression is worsening. His vacuum cleaner found itself smashed in anger and a blood vessel in his eye has burst; diagnosed by his diabetic nurse as being due to the stress.
It doesn’t seem surprising. Push an already vulnerable person and effect would be expected. The Government, either ignorant or unfeeling, is choosing to ignore it.
”Subjecting individuals to frequent reassessments and the financial hardship experienced as a result of losing benefits will cause the mental and physical health of many people to deteriorate,” Mind, the leading mental health charity, stresses to me.
Ray tells me that right now he feels as if he’s at his “wits end”.
As the bedroom tax and council tax charges begin, he’s going through the process of appealing his ESA rejection. He’s been told that, due to the backlog in cases, it will take up to a year to get a tribunal date. In the meantime, he must live on the appeal rate of ESA – 30 per cent less than he would otherwise receive.
“I’ve had to use my credit card, overdraft…” he says. “[I] even had to ask dad for help as I was unable to afford to feed myself properly.”
He’s currently trying to get by on his Disability Living Allowance (DLA) but, as its replacement, Personal Independence Payments (PIP), begins to be rolled out, does so with the awareness that this will be the next benefit at risk.
“I’ve had enough of it all,” he says. “It’s as if I keep being kicked in the gutter.”
Despite the Government failing to assess the cumulative impact of the changes, the cuts aren’t coming in isolation, after all. Nor are they coming for comfortable people in secure conditions; those who won’t miss a tenner a week or have the bodies and minds that mean, if needed, they can do a few more hours at work. By the nature of need, the people relying on disability, unemployment, or rent support are the people who were already struggling before each string of their safety net was pulled away.
People like Alex Baker who, due to his chronic neurological condition, can’t cook for himself. His £20 a week DLA isn’t enough to purchase care so he lives on pre-cooked meals that don’t need heating up. It means he buys multiple lots of pasta salad and a takeaway for heat a couple of times a week.
“This is a miserable way to live at any time,” he says. “But in winter not having a hot meal means that you’re cold all the time.”
He tells me, like Ray, he’s sure that even this money will soon go. The Government’s own figures predict the change to PIP will see at least 500,000 lose their support. Alex speaks as if he’s already planning for it.
“[I’ll] live on sandwiches on the days I am well enough to make them,” he says. “Or biscuits, as I did before my DLA was awarded.”
His fear is increased by the fact that the last time he re-applied for DLA he was rejected. He lost his benefit for seven months and had to go to a tribunal, where it was re-instated. He tells me he still remembers the welfare support officer who’d been assigned to help him explaining she’d done nothing with his case for six months because “most people pull out, so we wait.”
“I received monthly letters from the Department of Work and Pensions asking if I would like to withdraw my appeal in the run up to the tribunal,” he adds.
It’s experiences like these that frame the welfare changes for many people like Alex; bureaucratic failure, disregard, and resulting months of having to skip meals. These experiences do not make a person feel they will be taken care of or that the system going through the rapid reform is one on which you can rely.
On top of the removal of DLA, Alex will have to be tested for ESA when his contributions based Incapacity Benefit is stopped. He tells me he’s awaiting the assessment with “terror” and expects the same will happen with his PIP claim and ESA migration as it did with his DLA.
“Only now I won't have any assistance because [my council] have closed their advice service and sacked their welfare rights officers,” he adds.
Alex’s council tax has now increased from £36 to £111 per year. His disability that means he can’t work isn’t going to heal itself but the bills are increasing.
He’s being handed extra charges to keep his home whilst facing losing the support that helps him leave it.
It echoes Janet Mandeville’s story; another apparently faceless sick or disabled person being hit by simultaneous cuts and another person who has reached the point where they are grateful if anyone even listens. The 50 year old has multiple health problems and tells me she’s been housebound for the past six months as she waits to be assessed for a wheelchair. All four of her benefits are being affected by the welfare cuts.
Some have already come into effect for her, and others like DLA, are waiting around the corner.
Like many on the low rate of DLA, she tells me she’s sure the changes to eligibility under PIP will see her lose her support.
Janet’s doubly incontinent and the benefit buys some health and dignity.
“I use DLA mainly on complan, a food supplement,” she says. “And extra toiletries, wash powder and electric…”
From this month she’s losing over £13 rent a week due to the bedroom tax as well as £26 a month council tax. She tells me she’s already seeing the effect and is struggling with her finances.
“[I] had to pay less than the arranged instalment of water rates and TV licence and reduce food shopping to raise the bedroom tax and council tax,” she says. “It just isn't possible to take £20 a week from someone who is only just managing in the first place…The Government is taxing us out of our homes.”
The sentiment is particularly painful for Helen Aveling. Twelve years ago the now 44 year old, who has cerebral palsy, was living in a residential home. She lived there for seventeen years before moving to Chatham, Kent to “escape residential life” and live independently.
She’s been doing that with the help of the Independent Living Fund (ILF); the benefit that assists around 19,000 people with severe disabilities to live in their own home. The Government has scrapped ILF from 2015 and devolved current user’s care to local authorities – and, even more worryingly, have not ring-fenced the money. The fund is the difference between independence and existence for Helen and the uncertainty around the changes come at the same time as she faces cuts and change elsewhere.
In addition to ILF, she also relies on Disability Living Allowance and tells me she doesn’t know what will happen to her when it’s removed.
“I’m scared witless,” she says. “I’m terrified.”
One of her biggest fears is not retaining her enhanced mobility points under PIP and her accessible car being taken away. It is impossible for her to make the repayments on her own.
Meanwhile, though she has never been charged any council tax before, she is now being told to pay £25 for the next nine months. She starts with £28.29 this month, she says. She expects to be charged bedroom tax as well.
“I have the sense that all I had hoped for when I moved out of [residential care] is being eroded, little bit by little bit,” she tells me. “I'm angry, terrified and helpless all at the same time.”
Ray tries not to be angry, he says, but that it’s difficult when you feel discriminated against and sick with worry.
“I hope all this crying, pain and fear ends damn soon because I can’t take very much more,” he adds. “I just don’t know where to turn.”
*Some names have been changed