“I lay awake at night and go through all the things I pay for and how much I have left and come to the same conclusion every time,” Vicky Evans* tells me. “I just cry about it.”
The 49-year-old is one of 660,000 social housing tenants due to have their housing benefit cut when the so-called "bedroom tax" comes into effect in April, and who are currently living with the fear of what this will mean for them. Under the changes, working-age people in social housing who are deemed to be "under-occupying" their home will have to move to a smaller property or see their housing benefit reduced; a 14 per cent cut for people seen to have one spare room and 25 per cent for those with two or more. It’s a policy that is in effect targeting some of the most vulnerable members of society and will make life harder for people already struggling to get by.
According to the Government’s own impact assessment, almost two-thirds of the tenants affected will be from households that contain someone who has a disability . Already living on low incomes and seeing cuts to other benefits, they now face losing an average of £14 a week , and up to £80 a month.
Money is tight for Vicky. She’s had severe anxiety. Both of her parents and brother died by the time she was in her twenties. She has arthritis and sleep apnoea, leaving her unable to work. It means she has to live on £101 a week; a combination of income support and the low rate of Disability Living Allowance. With two spare bedrooms, she is set lose a quarter of her housing benefit.
“I’m worried sick about this bedroom tax,” Vicky tells me. “When the tax comes in, for me it’s going to be a choice between that and my gas and electric.”
She says she tried to tell the council she wouldn’t pay the tax. “They said as soon as I’m £50 in arrears then they will take me to court and [that] will lead to eviction.”
By the logic of this policy, Vicky should simply move to a one-bedroom property. However, she has looked on the housing list and there are no one-bedroom houses or flats within ten miles. This is a familiar story for people waiting for the bedroom tax to hit: tenants being told they are "under-occupying" their home but having nowhere to go. One-bedroom properties are rare in social housing and it’s estimated almost 95,000 people in England could be forced into arrears  from April, unable to cope with the benefit cuts but with no smaller home available for them to move to.
Vicky has lived on the same street for 27 years and in her current home for five of them. “I feel happy, safe and comfortable where I live,” she says.
When we talk she always refers to her house as “home”, because, she explains, “that’s what it is to me.” She knows everyone near her and everyone knows her, she tells me. The familiarity helps her anxiety and she’s clearly frightened at the thought of having to leave the area.
“If I have to leave my home and be put away from the places and people I know then I don't know how I'll cope,” she says.
Fred Williams understands what it is to be reliant on your home. He has cerebral palsy and his two-bedroom council house in south London has been heavily adapted to meet his needs. Williams, 59, had shared the house with his wife and step-children since 1991 but after the break-up of his marriage, now lives alone. Under the housing benefit changes, he will be classified as "under-occupying" what was his family home and is now being told to look for somewhere smaller to live.
“We’re talking about disabled people who can't just be picked up and dumped anywhere,” he tells me.
His house has over twenty years’ worth of adaptations to it. There’s an existing stairlift and the council added ramps to the front and back doors. It also now has an extended kitchen and an accessible shower.
Any property he moved to would have to be similarly adapted, he stresses. It’s an example of the cold economic thinking behind the bedroom tax: moving people from adapted homes, on the justification of savings for the public purse, only to have to pay for identical changes to whatever property they move to.
Like Vicky Evans, Williams has found the added problem that there simply aren’t the one-bedroom properties available to meet the demand. “In London Borough of Greenwich, I’m told to date there are 15 vacant one-bedroom flats,” he says. “There are over 800 on the waiting list for them.”
He is in the trap the bedroom tax is making nationwide: told to downsize or lose benefits, he will lose benefits because he cannot downsize. Finding ways to make up the short fall is difficult for anyone on a low income but, as Williams knows, poverty is compounded by being disabled.
His disability has meant he’s been unable to work since 2006 and is reliant on Employment Support Allowance (ESA) for his income. The Government has made no exemption from the bedroom tax for people on ESA, even those placed in the "support group" like Williams – those who have been classified as too sick or disabled to have the possibility of being employed. This is not only a tax on the poorest but people who have been classified by the Government itself as being without the physical or mental ability to financially support themselves.
It’s a fact that is going ignored, even in the letters currently being sent to people’s homes advising them they “need to start planning how [they] will make up that extra amount” they will lose in April. Fred Williams shows me the letter he received last month from his local housing association. Despite the fact that he is on ESA, the letter advises him to get help finding a job or suggests he could “try to increase [his] working hours.”
It’s hard to see the letter as anything other than a reflection of a system that is both incompetently and inhumanely ignoring people’s needs.
The letter begins by referring to a conversation between Williams and his housing association that he tells me never happened. He has a speech impediment and when we speak, we do so via email. “So how did they talk to me?” he says. “I had no conversation with anyone from Greenwich housing department.”
Williams tells me he watches Iain Duncan Smith on television promising protection for the disabled, but can't see it happening. “The whole issue surrounding the Bedroom Tax is a con,” he says. “[This] Government…are hell bent on making disabled people's lives hell.”
This is a familiar feeling for Jayson Lowery and his wife Charlotte. Charlotte, 40, has a severe spinal condition and is partially confined to her bed. Her husband is her full-time carer and they have to get by on Jayson’s carer’s allowance. Things are difficult generally for them right now.
“We don’t know what the new council tax regime is yet,” Jayson, 50, tells me. “My carer’s allowance as well might be submerged into universal credit this year.” The bedroom tax doesn’t come in isolation but rather is a new worry to a mounting list.
In their two-bed flat in Southport, there’s a single bed in one room and a specialist NHS-type, bed in the other. Charlotte’s wheelchair sits there too, cramped in with other medical equipment. Her condition means she can’t share a normal bed with her husband and their flat, partly adapted for Charlotte’s needs, is too small to put both beds in one room. From April, the couple will lose £12 a week because of this. Despite the fact that Charlotte sleeps in it every night, due to the fact that she lives with her partner, her room will be classified as ‘spare’.
It’s harmful for Charlotte to lie on anything other than a specialist mattress and Jayson is clearly worried. “She has two permanent pressure sores which are relieved by this mattress,” he tells me. “All Charlotte’s toileting is done in the bed.”
He has looked for a one-bedroom property but there are none big enough in their housing sector to fit both beds in one room.
The Lowerys' situation is one example of an issue at the heart of the bedroom tax: what is a vital room to many people is "spare" to the government. It results in a policy that penalises people for being simultaneously poor and disabled. Someone with a disability is more likely to need extra space, and are less likely to be able to pay for it.
When we speak, Jayson has just started the application for a discretionary housing payment ; the "top up" benefit local councils can award to people struggling to pay the rent. He isn’t optimistic.
“[I] don’t know if it'll cover everything or if we have enough adaptions [to the flat] to qualify,” he says. “We’ll have to give it a go.”
The Government have made an extra £30m available to the DHP fund from 2013/14 specifically to help people living in significantly adapted accommodation who will be affected by the bedroom tax . It is being promoted as both mitigation and justification for the reforms but it’s a tiny fund that’s shared by foster parents (also not exempt from the "under-occupation" penalty) and will reach a minority of the disabled tenants affected. In reality, the only help being offered is a short-term, unreliable plaster  (pdf) to a significantly deeper wound: welfare reforms that penalise people with disabilities for having extra needs.
There are adult-sized nappies filling Linda Taylor’s box room. She is another person who has just been informed by her housing association that her family will have their benefits cut for needing a room that’s been classified as "spare".
Linda, 43, and her husband share their three-bedroom home with their severely disabled son, Adam, and are his full time carers. Adam has heart, kidney and spinal problems which leave him with no mobility. He can’t use the bathroom and is bottled fed pureed food.
As for many people with disabilities, their "spare" room is packed with the multiple pieces of equipment Adam needs each day. It’s a small space but it contains a pressure mattress for physio and play, oxygen cylinders, two specialist chairs to help him sit, and a special table with sensory toys his mum tells me Adam stands against while he’s strapped in his standing sling. Thirty four packs of twenty nappies are also there, stored to last three months.
The room is used by a carer sometimes, during the day or night. “I was told [by the Housing Association] that to be exempt the carer would have to be asleep,” Linda tells me.
“I feel so frustrated,” she says. “The only solution I can see is to go and find a job which I would be willing to do if the council is willing to provide the full care needed for my son . . . When you can only get eleven hours care a week we’ve got no chance of changing life for the better. We’re left in a no win situation.”
Jimmy Daly, 50, is finding it difficult to see how things are going to improve for him and his son. The nine-year-old has learning difficulties and spastic quadriplegia and lives between his mum’s house and his dad’s two-bedroom maisonette. When the changes come into effect, Daly will have his housing benefit cut for having a bedroom for his son that isn’t used every day.
“I’m finding it very very hard at the moment,” he tells me. “And when they take about £10 a week off me, well I don’t know…It’s wrong.”
He’s currently living on £71-a-week Job Seeker’s Allowance and his attempts to find work are leading to nothing. He cares for his son three nights a week, takes him to school and back and looks after him in the holidays.
Under the new housing benefit rules, a severely disabled child who needs a room of their own may be permitted not to share without a loss to the family’s benefit. However, this is only the case for the child’s "main residence" and won’t take into account people sharing custody . Parents like Daly are going to be penalised for doing their part in taking care of their child and, worse, for that child being disabled.
“If this goes ahead I’ll have to move into a one-bedroom flat,” he says. “How do you sleep in the same bedroom as a disabled boy?”
He has no money to make up the short fall in benefit. Due to his son’s extra needs, he is already paying more for heating, electricity, water, food, and diesel, he tells me. As another worried parent of a disabled child who got in touch said to me, no amount of extra socks helps a disabled child. These parents have no choice but to keep their homes permanently warm.
“I don’t use heating when he isn’t here,” Daly says. “I can’t afford it.”
He tells me right now all he can see for himself is giving up his car which he needs to pick up his son or becoming homeless. “If I do end up homeless I’ll no longer be able to see my son. If that happens I won’t cope with that,” he says. “I know I’ll be better off taking my own life.”
The next two months will be a wait for the bedroom tax to hit. He adds, “I hope I get a job by then.”
*Some names have been altered to protect identity