by Frances Ryan
As councils are cut to the bone, housing shortages are inextricably linked to the social care crisis. In short, poor housing only increases the need for carer workers. Like many disabled people stuck in inaccessible housing, Robert is also living with a shrunken social care package. Despite his medical team explaining he needs 24/7 support, social care cuts mean Robert is left alone for large parts of the day; the equivalent of over four days a week. Without his wheelchair in the flat, he’s unable to move, and with no personal assistant, he can’t reach a drink or even change his incontinence pads. ‘I sit in the same position or I fall on the floor in my own mess,’ he says.
Being left to live like this for years has not only taken its toll on Robert’s mental health, it is also helping to destroy his body. In 2017 he was turned down for an NHS rehabilitation programme on the grounds of his housing situation. The programme might have helped him keep some movement in his torso but he was told that while he lives in his current flat – and his body is taking the strain of being dragged around – his living conditions would undo any progress he made. A year later, his health had deteriorated to such a degree that he had almost fully lost his voice due to paralysis. In our last conversations, we had to communicate by email. Having to be physically dragged downstairs has caused irreparable damage to Robert’s health. He writes, ‘My medical team are now currently looking at a double below-the-knee amputation.’
Millions of Britons are in insecure, poor-quality homes against a cocktail of fading social housing, lack of affordable new builds and high private rents. A 2018 report from the Resolution Foundation predicted that one in three millennials will never own their own home; half will be renting in their forties, with a third even likely to be doing so as they claim their pensions.17 While intergenerational inequality is a defining feature of the modern era, the push to private renting that’s characterized housing in recent years goes far beyond the young: a record 1.13 million people aged fifty and over were renting from private landlords in 2018, compared with 651,000 a decade earlier.18 In a land of shrinking social housing stock and rocketing house prices, the private landlord is increasingly king. In 2018, research by the Housing & Finance Institute showed that 6 million more people are living in short-term rented housing than fifteen years ago as a result of the explosion in private renting, with fewer and fewer Britons owning their own homes or living in social housing.19
Such a reliance on the private sector is a worry – many families struggle to afford rising rents yet lack the rights that come with homeownership – but it’s a state of affairs that’s particularly damaging to disabled people. The vast majority of private rented contracts are assured shorthold tenancies and, as it stands, any landlord can evict a tenant with just two months’ notice after a fixed-term period under a Section 21 agreement without providing any reason at all. That’s grim for anybody, but if you’re a disabled person on a low wage or benefits, having to find the money to move, to pay fees and for a deposit can be impossible. As a result, disabled tenants risk homelessness if they can’t find new suitable accommodation.
Many private landlords outright refuse to take tenants if they pay their rent with social security; a form of discrimination that’s akin to putting a ‘No Disabled, No Poor’ sign in the window. People who receive disability benefits are three times more likely to need a housing benefit top-up. Research by Shelter and the National Housing Federation (NHF) in 2018 found that discrimination by letting agents against housing benefit tenants is rife, with disabled people and women the most affected.20 This discrimination is only increasing. In 2017, the National Landlords Association (NLA) found that only 18–20 per cent of private landlords accepted tenants who pay their rent with the housing benefit, local housing allowance (LHA), down from 46 per cent in 2010–11, while it’s feared that this will only worsen further with the roll-out of Universal Credit by 2023 as landlords become wary of the huge rise in non-payment of rent in areas where UC was first introduced.21
Meanwhile, a private rental property is often the least accessible option. Housing built for private rent is generally at a lower accessibility standard than other properties, while even gaining information on whether a property is suitable for someone’s disability is a struggle. Estate agents, for example, do not typically provide information about the accessibility of private lets (or houses for sale). In addition, with no little irony, many estate agents’ premises, small and up a few steps, are inaccessible themselves to disabled people who can’t even physically get into the place.
To make matters worse, private sector landlords are notoriously reluctant to permit even small-scale adaptations to make a home more accessible. As one young renter who needed grab rails fitted into his bathroom told me, ‘My landlord won’t even let us put picture frames up.’
This is far from a niche problem. As well as the flood of young disabled renters wanting to move out of their family homes, research by the National Housing Federation in 2018 into the ‘baby boomers’ housing crisis’ found that nearly three-quarters of older renters have a disability or chronic illness. Many were subsequently struggling with insecure contracts and unsuitable homes. Of people who need vital changes to be made to their homes, such as adding handrails, ramps or wider doorways for their wheelchair, around one in six reported not being able to wash themselves independently as a result of not being allowed adaptations, while two-fifths have had a fall.22
Social housing, in principle, should be a solution to this. Disabled people are more likely to live in social housing, as it’s more affordable, it tends to provide more security of tenure, and landlords are more willing to install adaptations and provide support, if required. But diminishing housing stock following the right-to-buy policy of the 1980s and a failure by successive governments to invest in new builds means that a chronic shortage is shutting off this option. The number of new, government-funded social homes has fallen by ninety-seven per year since 2010, with just 1,102 new homes completed in 2017.23
Need outstrips supply by staggering proportions in many boroughs around the country. A major cross-party commission into social housing in 2019 concluded that more than 3 million new social homes would be needed by 2040 to cope with demand – equating to the biggest social house building drive in England’s history, including the two decades after the end of the Second World War.24 As things stand, research by housing charity Shelter in 2018 found that over a million people across the country are waiting years for a home. Almost two-thirds are on lists for more than twelve months. Meanwhile more than a quarter can wait for more than five years.25 Some, particularly the poorest, are left waiting their entire adult lives. The BBC documentary No Place to Call Home in 2016 found that the deprived London council Barking and Dagenham had fifty times more people on the housing waiting list than properties available.26 The waiting time for a home was up to fifty years.
In theory, disabled people are relatively protected from such a crisis, as some will be eligible for a higher-needs band aimed at getting them a property more quickly. In reality, many disabled people are deemed ineligible by their council for priority bidding, while the deficit in accessible properties means that there are substantially fewer properties for them to bid on. Giving a wheelchair user first dibs on a tower bloc flat with no lift is less a help and more a cruel tease.
The impact of this is that disabled people are increasingly pushed into the private rental market, and, by extension, into severe financial hardship. A report in 2018 by the charity the Nationwide Foundation found that one million ‘vulnerable people’ on low incomes, including families with a disabled member, are being driven into deeper poverty due to the acute shortage of social housing as they are forced to pay above the odds for unsuitable private rentals.27 It pointed to the changes to the benefit system – including benefit sanctions and the roll-out of universal credit – having ‘created vulnerability’, with families including a disabled person on low incomes in a significantly more precarious position in trying to avoid
mounting arrears and eviction than was the case ten years ago.
Disabled people, then, are increasingly caught in a vicious circle of housing: where the drop in affordable and social housing, mixed with a nationwide shortage of accessible properties, shuts us out of finding a suitable home. Meanwhile the rise of short-term private rental contracts, combined with growing economic pressures on both local councils and families, blocks us from adapting an inaccessible property. There is a growing by-product of this broken system: being dumped in temporary accommodation – poor-quality bed-and-breakfast accommodation, private hostels or short-stay shared houses.
Fuchsia has been living out of a budget hotel for four months. The thirty-three-year-old uses a wheelchair; a spinal injury and displaced hips mean swollen joints and spikes of pain, while fibromyalgia leads to bouts of exhausting fatigue. It was the end of 2017 when she first became homeless after her temporary flat – staying in a friend’s spare room – fell through. A more permanent home had evaded her: she couldn’t find a flat that was accessible for her wheelchair in Bournemouth, and when she did, private landlords would not rent to her because she was on benefits. Unable to stay with her friend any longer, Fuchsia slept in her car.
The strain on her body after only a few nights led her to be admitted to hospital, where an NHS homeless worker offered to take her to her local council for help. After a five-hour wait, she was told they’d found her somewhere to stay: a hotel room in Crawley, West Sussex, miles away from her primary care team and support network. Living out of a hotel is difficult for anyone, but for someone with a disability or health condition, it can be particularly gruelling. Stuck in an unfamiliar area and without a permanent address, Fuchsia couldn’t get a GP to help with her pain meds or her catheter. ‘I was so, so ill,’ she says. For two weeks, she bounced between the hospital and hotel while becoming increasingly distressed and in pain. By the end of the fortnight, Fuchsia attempted suicide. She survived, but the strain of the accommodation had taken its toll on her mentally and physically. ‘My health was rock bottom,’ she says.
More than 280,000 people were living in temporary accommodation in Britain as of 2017 – equivalent to around one in every 210 – according to figures obtained by Shelter.28 (A further 21,300 were in single homeless hostels or social services housing, while 4,500 were sleeping rough.29) Such a number is an underestimate, the charity noted, as they did not include people trapped in so-called ‘hidden homeless-ness’, who have nowhere to live but are not recorded as needing housing assistance. The National Audit Office calculates that the number of households in temporary accommodation increased by 60 per cent between 2011 and 2017.30 The dramatic rise in temporary accommodation has characterized the senselessness of the housing crisis in recent years: instead of building more homes, ministers shell out hundreds of millions31 to private landlords cramming people into short-term lets. For disabled people like Fuchsia, it’s little more than a holding pen: with no accessible properties available for them, they are bounced around B&Bs, budget chain hotels, and short-stay properties as they wait for months or even years for the council to find them a suitable home. In this climate, a Premier Inn is Britain’s new social housing.
With her health worsening, Fuchsia’s council moved her to another hotel, this time in Newhaven across the county in East Sussex. It was better-quality – her bed had a specialist mattress suitable for her disability – but at £170 a night, within a week the council had moved her again, now to a cheaper lodge in Eastbourne. As she puts it to me, ‘I went from being on an orthopaedic bed and a clean room to being in hell.’
The bed was so high that Fuchsia often could not transfer safely onto it from a chair. When she was strong enough to get onto the bed, the mattress sent her back muscles into spasms; the only way she can sleep is on top of two pillows and a quilt. The bathroom wasn’t cleaned regularly so Fuchsia kept slipping on the wet floor. The first time I speak to Fuchsia, she is in hospital after falling over in the bathroom when staff had not mopped it. ‘Everything went from beneath me … I hit the floor like a sack of potatoes,’ she explained on the phone.
Living out of a hotel means there are no kitchen facilities so Fuchsia cannot make herself a meal. Instead, she lives from a mini fridge; big enough to fit in yogurt and cheese but not much else. To have a hot meal, she has to pay for takeaway – spending ten pounds a day out of her benefits – or, if not, she eats cup-a-soups or noodles. A friend has just bought her a rice cooker ‘so at least I have one hot meal a day’, and she’s mainly living off crackers, pesto and cold Heinz soup. It’s taking its toll on her health: she’s developed malnutrition and anaemia and is visibly pale with grey circles under her eyes. Hunger is hard enough when you’re healthy, but when you’re already fatigued or weak it’s like an assault on the body. When Fuchsia’s in hospital, the nurses get her to eat two hot meals before she goes back to the hotel, she says. ‘I’ve got enough problems without not eating properly. But I’ve got no choice.’
Such conditions are reflective of a wider picture of how those on waiting lists are forced to live. Research by the Institute for Public Policy Research in 2016 found temporary accommodation in Britain to be plagued by squalid, damp and dangerous conditions, with tenants reporting kitchens infested with cockroaches, quilts soaked in blood, and no heating.32 One tenant was forced to sleep in their coat and scarf in order not to touch or ‘breathe in disease’. It’s a dark irony: the very people trying to gain stability are often put in accommodation that makes their life worse. Vulnerable people sent to homes with abusive management and tenants. Those with breathing problems expected to live in properties that have environmental health warnings. Individuals who already have weakened bodies now unable to make regular meals or wash without adequate kitchen and bathroom facilities. Or wheelchair users shoved in high-rise buildings with inadequate fire safety.
Fuchsia is not even able to use her wheelchair at her current hotel. There is no disabled parking outside, which means she can’t safely get her chair out of her car; instead, she has to park on the seafront on a thirty-mile-an-hour road (‘I tried twice to get my wheelchair out and two cars nearly hit me,’ she explains). Besides, the ramp going into the hotel is too steep for a wheelchair and there’s no automatic door; once, she tells me, she fell out of her wheelchair trying to get through the door, tipping back and hitting the floor. After that, she left her wheelchair in the car and started using her walking sticks to get inside. Unable to have the safety of using her wheelchair in the hotel, she’s now regularly having falls. ‘I’ve had to call the ambulance service four times in a month because of this,’ she says.
Even without accidents, Fuchsia is normally reliant on heavy-duty pain meds but because she’s in temporary accommodation, she has no way to access them. She’s now out of her medication but because she can’t register as a full patient at a GP surgery until she has a permanent address, no one will prescribe them to her. Instead, she’s falling back on increasingly desperate measures. She’s turning to A & E for morphine; she’ll go to the emergency ward, come back to the hotel, and then repeat. On one occasion she had to remove her own catheter at the hotel because she couldn’t get a community nurse to come and see her. Out of borough and cut off from support networks, she’s also a forty-five-minute drive from her nearest friend. There is no phone signal in the hotel, so in case of a health emergency, she has to somehow get herself outside on her crutches if she needs to contact someone, even the paramedics.
Months of living like this mean, in Fuchsia’s words, she’s ‘losing it’. ‘I have begged and begged for help,’ she says. ‘I’m struggling to continue any more. I am so, so sick.’ The council offered her a property at one point but it was so inaccessible that she couldn’t get her wheelchair in and out of it. Turning properties down always comes with danger: people who refuse to take what the council offers risk being found ‘intentionally homeless’ under homelessness legislation, meaning there is then no further legal duty for a council to help
them.
Fuchsia knows there’s an added risk for disabled people like her: if the council repeatedly offer her inaccessible housing, she could find herself kicked off the housing list entirely, simply for turning down properties she cannot physically get in. On top of this, there’s a fear that disabled people will be turned away by councils for being ‘too much trouble’. In December 2016, a piece by the campaign group Sisters Uncut for the Guardian reported that homeless people with learning difficulties, for example, are more likely to be turned away as local authorities feel they don’t have the resources to provide the appropriate care.33
Months later, Fuchsia contacted me to say she had been moved into another temporary accommodation – this time a two-bed ground-floor flat. It is a reprieve – she is out of the hotels and is no longer classed as being in emergency housing. But it is still partly inaccessible. The bathroom is so tiny she can’t fit her wheelchair near the sink, (‘You can sit on the edge of the bath and wash your face in the sink. That’s how small it is,’ she says), which means she can’t use the toilet. Instead, Fuchsia is forced to have a commode; a plastic seat and a potty for a bathroom. Because it’s temporary accommodation, she’s also not allowed to make even minor adaptations to the property: grab rails in the bathroom or an electric motor on the front door to help her get in. Outside her area, it’s still miles away from her support network. She has a roof over her head, but it’s not quite a home.
At a time of a shortage of social housing, falling homeownership and rising private rents, housing benefit – the meanstested rent support paid to around 5 million low-income tenants – is a lifeline for many. But just as families were finding it harder to keep a roof over their heads, austerity policies were introduced that withdrew the housing benefit they needed to pay the rent.