Show Hide image 7 April 2015 What has happened to the disabled people affected by the Coalition’s welfare reforms? Frances Ryan revisits previous interviewees to find out how they are coping with the bedroom tax and the changes to benefits like the Disability Living Allowance. By Frances Ryan Follow @@drfrancesryan Sitting in their two-bed flat in Southport, Merseyside, a wheelchair cramped up next to a hospital-type bed, Jayson and Charlotte Carmichael have found themselves unlikely figures of the coalition government. I first spoke to the couple back in February 2013, two months before the bedroom tax – which saw working age social tenants have their housing benefit cut for “under-occupying” their home – would come into force nationwide. The Carmichaels are in many ways reflective of why the policy went on to become the most controversial social security cut of the past five years. Charlotte, 42, has a severe spinal condition and is partially confined to a specialist bed. Sharing an ordinary bed with her husband, Jayson, would cause damage to her permanent pressure sores and their flat, partly adapted for Charlotte’s needs, is too small to put both beds in one room. Despite the fact that Charlotte sleeps there every night, due to her carer also being her live-in partner, from April 2013, the couple began losing £12 a week for having a “spare” room. Since then, the Carmichaels have been challenging the bedroom tax on two fronts: taking their own case to a local tribunal in a bid to be judged exempt from the policy and going to the Supreme Court, as part of a group case of five families, to overturn the legislation itself. It has been two years of court dates, battles, and exhaustion. “I have been depressed and sometimes thought enough is enough, we can’t go on anymore. Then we have a small success and I pull myself around and say ‘we have to go on to help others in the same boat, other disabled people’,” Jayson, 52, tells me when we speak again. “I try and use adrenaline to keep going.” The “small successes” Jayson describes have allowed the couple to so far keep paying the rent. In April 2013, they successfully applied for Discretionary Housing Payments (DHP), the emergency short-term fund designed to assist some disabled people affected by the policy, and by April 2014 – one year on – were deemed fully exempt from the bedroom tax at their local tribunal. But the success proved short-lived. Three months later, the Department for Work and Pensions (DWP) had applied to overturn their win. “We were over the moon and then when the judge said the DWP had decided to challenge it…we just felt deflated. I didn’t know what to do,” Jayson says. “They won’t let it rest.” “If the DWP overturn the tribunal ruling, we might be liable for the two year backdated bill,” Jayson adds. “It could be £1, 500.” This sort of looming threat marks the uncertainty the couple have had to live with over the past two years. Charlotte tells me she thinks about what will happen to her if they’re forced to move to a one-bed flat. “I’m frightened one day I won’t be able to stay in my home simply through not being able to afford to pay the bedroom tax,” she says. “I’m frightened I’ll be forced to go into a nursing home.” “Charlotte’s been hit so hard,” Jayson adds, “Much worse with being disabled. Worse than me.” With the DWP challenging their exemption from the policy, they are pinning their hopes on a Supreme Court win. It will be a long wait. Jayson emails a week later to tell me they have been given their court date: “March NEXT YEAR,” he writes. “The silver lining on the late date I suppose is that we can hold the next government – if there is a different one – to its promises if they’re a more left wing one,” Jayson adds. “We’re happy to have weathered the fight this long… Two years.” *** The long fight is familiar to Pamela and Jim Hardy*. Pamela, 43, has Multiple Sclerosis and is full-time carer to her husband, who has both mental and physical health problems, as well as their ten-year-old daughter, Katie. I first spoke to the family back at the start of last year when – with arrears of £400 – they had watched themselves become a stat in the mounting bedroom tax headlines: the one in seven families affected by the policy being handed an eviction notice. In their struggle to keep their home, Pamela and Jim Hardy exemplified the complex – often senseless – elements disabled social housing tenants hit by the bedroom tax have had to maneuver: a flawed central government decision to bring in the policy and a local council and/or housing association refusing to offer support. Settled within their three-bed house, the family had been put in the property seven years ago by their housing association as a “medical move”. Despite this and the fact that both Pamela and Jim’s doctors report their individual conditions mean they need to sleep in separate bedrooms, because they’re married – just as the Carmichaels found – the bedroom tax means the extra room is classified as “spare”. At less than 50 foot square, it is barely a box room, and legal advisers say it’s illegal to call it a bedroom. Medical test units sit squashed against the bed and a small cupboard is full of boxes of stored medication and controlled drugs that need to be kept locked away. With ten-year-old Katie in the house, there’s nowhere else to safely store it all. The family had applied for a discretionary housing payment to help cover the rent but, after one short-term approval, the council repeatedly turned them down. “They said we should work, get a lodger, or look for a smaller house,” Jim, 50, tells me when we speak again in the New Year. It’s this sort of dire understanding of disability that saw their council also repeatedly count both Jim and Pamela’s Disability Living Allowance (DLA) as “income” when assessing the family’s need for a DHP. This contravenes the principle behind DLA: that it is there to meet the additional costs of disability a person may have in terms of care and mobility and as such, by nature, cannot be viewed as “spare money”. Disabled people struggling to pay the rent while needing money for anything from specialist transport to care assistants end up being seen by local councils as comfortable tenants with spare cash. Just last week, a disabled couple successfully challenged their council for using this DLA calculation. In what was said to be a landmark High Court judgment, it was ruled that Sandwell Borough Council's decision to count the disability benefit as income when assessing applications from people affected by the bedroom tax for a DHP was unlawful and amounted to a breach of the Equality Act 2010. This ruling may be the first step in tackling what has emerged over the past two years as yet another perverse aspect of the bedroom tax: that disabled people – repeatedly pointed to by the coalition as the intended recipients for DHPs – have actually ended up less likely to receive help than non-disabled tenants. It’s resulted in a two-tier bedroom tax on disability. Already penalised for needing an extra room, they are then penalised for receiving disability benefits. It was similar senseless action that, at the same time, saw Pamela and Jim issued with a court date for May 2014 – despite receiving no warning an eviction notice was coming (something their legal advisor says breeched the pre-action for eviction of tenants by social housing providers) and their third DHP application still being processed. Jim tells me that it was only through turning to legal representation that their eviction was eventually stayed. “Today we luckily still have our home,” he says. “It was disgraceful how they failed to communicate fairly.” They’ve since made a formal complaint to their housing association. “They tried to close it twice,” Jim says. “They just didn’t accept they had done anything wrong. Really frustrating and not right.” But avoiding eviction was little more than temporary relief for the family. The reality of shrinking social security – be it housing, unemployment, or disability care or mobility – is that keeping your ahead above water for a few weeks does nothing to stop the risk of drowning. With the bedroom tax continuing to hit each month and the DHP still being refused, Jim tells me the family resorted to using their DLA to pay the rent extra. It meant siphoning the benefit away from what it was awarded for: extra heating, washing loads, and medical supplements. “[Our disability benefit] is normally used…to make life and our conditions more easy to manage,” Jim says. “Due to the seriousness of the pain with both of our conditions, many days we’re pretty much house bound [so we use extra heating and washing]. Water bottles are a good extra source of direct pain relief… Kettles are on stand by daily. They’re often used day and night.” “Due to other personal day and evening problems regarding my condition extra washing loads take place per week,” he adds. “Our bills can be costly.” Again, with the help of a solicitor – and the threat to the council of a judicial review on the issue – in May 2014 the family was awarded a DHP for the next year, as well as a back-payment. This month, with the DHP about to run out, the family find themselves back to where they began: once again applying to the local council for help and waiting to see if they will be able to pay the rent. “It’s all starting again,” Jim says. “At present, it’s feeling a bit daunting. We’ve heard the amounts for DHPs have been reduced. It’s like a dark cloud’s looming nearby.” *** The wait is part of the battle. Jay Henderson, 50, had a stroke in 2013 and her ex-partner, Ken, became her full time carer. The deterioration in Jay’s health was brutal. The stroke left her unable to communicate and with severely restricted movement. She now relies on Ken’s help for basic needs, be it washing or dressing, and preparing food. But it was delays in Jay’s disability benefits being awarded – both Personal Independence Payments (PIP) and Employment and Support Allowance (ESA) – that left them at their “wit’s end”. When I last spoke to Ken back in February 2014, they had been stuck in the benefit backlog for eight months. Despite the fact the assessment period of ESA should last no more than thirteen weeks, Jay had been left for seven months – having to live on the lower “assessment” rate in the meantime. With no other support coming in, the electricity bill was in arrears and the phone – a lifeline if Jay needed to go to the hospital – was due to be cut off. They were existing on charity food parcels from a local food bank. “We’re working tirelessly to try to improve Jay’s health and getting to the point when she was getting her benefits was [another] enormous struggle,” Ken, 50, says when we talk again a year later. “The struggle wasn’t only financial but also trying to get any response from the DWP and Atos. We kept getting fobbed off, even with different agencies contacting them on Jay’s behalf and us contacting the head of Atos.” “The whole process has taken its toll,” he says. Jay and Ken are one of the many victims of what has developed into a widespread crisis in the disability benefit system. It’s two years this week since PIP began its rollout to replace DLA, the outgoing benefit to cover care and mobility needs, and the process has been characterized by false rejections, backlogs, and year-long delays – with parliament's public spending watchdog dubbing the government's handling of it “nothing short of a fiasco”. Almost 200,000 disabled and chronically ill people are currently stuck in a backlog waiting to be assessed. This is before a national-roll out has even begun (the DWP have been forced to delay that, as well increase predictions for how long people would have to wait for support or even get an assessment). At the same time, ESA backlogs could take as long as 18 months to clear, according to its new private provider. Maximus, who took over the “fitness to work” contract from Atos last month, say it will have to conduct one million assessments this year – a test MPs call crude, simplistic and a “stressful and anxiety-provoking experience”. This mass “reform” of the system means, like Jay and Ken, many disabled and chronically ill people are having to simultaneously go through both benefit processes – so, with delays in both, all sources of income are taken at once. Ken tells me that despite “many phone calls and emails”, it was in contacting their local MP, Christopher Chope, in March 2014 that they finally got somewhere. Within two weeks, PIP paid out and another two weeks, ESA arrived too. “We have to thank Christopher Chope but what a shame that’s the route we had to take,” Ken says. This sort of “last ditch” effort is one I hear from many people going through the coalition’s disability “reforms”, whether it’s writing to local MPs – and hoping for a response – or attempting to gain the attention of someone higher up. Jayson Carmichael tells me a television reporter recently challenged David Cameron on his and Charlotte’s case. “He said he'd look into it and we did get a letter from him. He said that DHPs were available to vulnerable people,” Jayson says. “We know now Cameron won’t change anything.” Against a backdrop of media reports – and ministerial rhetoric – of the apparent ease of gaining disability benefits, the reality is often a long, desperate attempt for someone in authority to listen. Jay Henderson has been battling the process without being able to say more than one or two-word sentences. Her lack of movement in her right side means she’s also unable to write. Ken describes it as her knowing “what she wants to say” but struggling “to express it”. When I speak to them, it is Ken that talks – often attempting to get across what Jay wants to express. Without his help, it’s hard to imagine Jay wouldn’t still be left without state support. “The system still hasn't changed,” Ken says. “The system is seriously broken and if any company was to operate like this they would surely go out of business. No one is accountable. It's immoral.” “I feel sorry for the people still going through what we went through. The benefit system’s affecting so many vulnerable people, how can it continue? Iain Duncan Smith should be ashamed but instead tries to justify his actions.” “Is there a real answer to this problem?” he says. “Things seem to be getting worse.” *Some names have been changed Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.