You might not think of Jane* as the sort of person who would be taking on the Government. She has two boys, and the youngest, Thomas, is autistic. She’s not able to work because she's busy caring for him, and she tells me she often thinks about being “normal” like her friends. Her husband has serious health problems and the daily focus is on getting by.
Things can change, though. Something can happen that pushes families like hers, who are “getting by”, over the edge. For Jane, it was two things: receiving a letter informing her that the family’s housing benefit would be cut unless Thomas shared a bedroom with his brother; and health professionals telling her that, because of the distress that sharing a room would cause Thomas, he would go into residential care.
This month, Jane has taken the government to court. She is one of several people who have started legal action against Work and Pensions Secretary Iain Duncan Smith and the impending “bedroom tax" (or, as David Cameron would have it, the end of the "spare room subsidy"), due to come into force next month. The plaintiffs' legal teams say what the bedroom tax critics have said from the beginning: the policy disproportionately affects disabled and vulnerable people, discriminating against them for being both more likely to need an extra room and less likely to be able to pay for it.
Many of the people taking part in the legal challenge are parents of severely disabled children, like Jane. Some are adults with disabilities; one is being penalised for not being able to sleep in the same bed as her husband; another has anxiety and persecutory delusions, aggravated by stress, but is expected to move or take in a lodger. Others are victims of domestic violence, with children who have been abused. All of them have been expertly assessed as requiring their own bedrooms but have been told they must now give up a room they need, or lose money they don’t have. They’re a handful of families, in many ways, that represent hundreds of thousands of others around the country.
“I’d like the people responsible for this policy to come and see how we live,” Jane tells me.
Her son Thomas often has screaming episodes or is aggressive. Something as common as a washing machine or the noise of a hairdryer can distress him. He is strong and frequently attacks his brother, Lucas, and rips his clothes apart. Despite this, the family have been told that in two weeks they will have their benefit cut unless the boys share a room.
Doctors, including Thomas’s psychiatrist, say that sharing would likely lead to a surge in violent behaviour and that, due to the risk of this situation, it would not be possible for Thomas to continue living with his family. The only realistic option would be residential care in a specialist placement.
“I can’t believe that that might have to happen,” Jane says. “I’m determined to keep my son at home and to do that he needs his own room.”
She tells me her and her husband have been “desperately trying” to think what they can cut down on to compensate for the reduction in their housing benefit, but they have no luxuries to cut. The only thing they can think of is Thomas’s “travel training”, she says, in which they take Thomas repeatedly to the same places “so he can learn not to be scared”.
Amid increasing pressure from critics, it was hoped that Iain Duncan Smith was ready to make concessions for children like Thomas. Yesterday, DWP officials stated that they had issued guidance to Local Authorities that families with a severely disabled child can be exempt from losing part of their housing benefit.
The claim received less media attention than the wider concessions to foster carers and members of the armed forces (pdf) and failed to offer much explanation of what it actually meant. The initial wording suggested it was at best a concession for children with “certain disabilities” and that the need for a bedroom will be assessed on a case-by-case basis. It’s thought that when a claimant says that their children are unable to share a bedroom, it will be for LAs to satisfy themselves that this is the case.
Rebekah Carrier, the solicitor acting for the claimant children and their parents, tells me she’s currently reviewing the details of the new guidance - but she remains concerned the government hasn’t amended the regulations. “The guidance is very unsatisfactory, as it’s unclear,” she says. “I’m delighted if the litigation and press coverage have resulted in positive changes . . . but the government haven’t yet set out their position to us and indeed haven’t written to me at all about any changes.”
Adults with disabilities, such as Charlotte Lowery-Carmichael, another person taking legal action, are waiting for any acknowledgement of their situation. Charlotte has spina bifida and sleeps in a specialist bed in order to ease her bed sores (among other reasons), while her husband Jayson has a single bed in their box room. Charlotte would be exempt from the penalty if her carer was a live-in assistant - but because he is her husband, she is not.
I first spoke to the couple in January when they had just been told their second bedroom was being classified as “spare” and they would lose £12 a week of their housing benefit because of it. With the help of disability campaign group We Are Spartacus, they’ve since gained legal representation.
“We’re proud to be part of this,” Jayson says. “It might get us some justice.”
He tells me going to court feels like the only option they have. "We feel that the legal course of action is the only way that the government will make any amendments to the legislation."
No wonder many feel that, until this point, the Government haven’t been listening. Funds called "Discretionary Housing Payments" are being increasingly held up as the solution to the bedroom tax's disproportionate hit on disabled people, despite the fact that many are not eligible - and there not being enough money to go around those who are. Meanwhile, David Cameron is publicly stating (in last week’s Prime Minister’s Questions) that “people with severely disabled children are exempt and people who need round-the-clock care are exempt”. This is at best inaccurate, and at worse, a lie.
As Anne McMurdie, a solicitor representing the legal teams involved, said to me: “The Prime Minister’s understanding of the policy is not accurate and doesn’t reflect what his colleague [Iain Duncan Smith] . . . is arguing in court proceedings.”
The High Court has given the Work and Pensions Secretary until 18 March to show why there should not be a judicial review of the entire “bedroom tax” policy. It will come two days after 24 hours of action against the legislation, with more than 50 protests planned around the country. The clock is ticking until the policy starts to hit and the dissent is getting louder.
For Holly, another member of the legal challenge group, public attention is not something she wants. Her ex-partner (known as “M” in the case) was violent and, after leaving him two years ago, she lives with her two young children, Isaac and Joy, in an area he doesn’t know. “M” was arrested after physically assaulting her soon Isaac when he was six years old. Holly is conscious of protecting their identity and when we speak we do so via her solicitor. It says something about the level of desperation many are feeling that, despite these concerns, Holly is taking part in legal proceedings.
She feels the court action is the only option left to her. Those escaping domestic violence have no protection from the bedroom tax, nor do children recovering from abuse.
Holly’s children still struggle with the violence they witnessed, but are making some progress now they have a stable home. Isaac finds things particularly difficult though and shows what’s been diagnosed as traumatised behaviour. He’s violent and unpredictable and often needs time alone to cope with his feelings. It was for this reason that the council allocated the family a three-bedroom flat in 2011, enabling the children to have a room each. From 1 April, they will lose just over £15 a week because of it.
“We don’t have any spare money at all,” Holly says. “We don’t have family or friends who can support us and we don’t have any savings.”
Isaac has previously attacked his sister, cutting her hair. It’s clearly frightening for Holly to consider them sleeping in the same room but to stop this from happening, she’ll have to lose money she relies on. “I’m worried we won’t be able to manage at all if our housing benefit is reduced,” she says.
Holly is aware that if Isaac was a couple of years older, the family would not be going through this (under the regulations, children of different genders over ten do not have to share a room). In a couple of years, the family will be re-eligible for a three-bedroom flat. Housing shortages mean it’s uncertain whether one will be available then, and even if it is, another move will result in the children going through more disturbances in order to get back what they have now.
That absurd situation seems reflective of the lack of sense or consideration running through these changes. Disabled adults are being charged for a room they sleep in, while parents of abused children are being advised to invite a stranger into their home to lodge there as a means to get by.
As Rebekah Carrier , the solicitor acting for the claimant children and their parents, says: “A year ago the Children’s Commissioner warned the government that these changes would have a disproportionate and devastating impact on families with disabled children and those fleeing domestic violence. The appalling situation my clients now find themselves in was entirely predictable and avoidable.”
Holly hasn’t told the children what’s happening yet. She knows the emotional impact it would cause and says she doesn’t want to upset them.
Joy is scared of Isaac and they both just need stability. “I don’t know what to do,” Holly adds.
* some names have been changed.