by Frances Ryan
While care hours are cut, other council services are simultaneously pulled away. Take Meals on Wheels – an idea first born more than seventy years ago to counter wartime malnutrition and provide safety checks for isolated members of the community. In 2014, two-thirds of councils were offering a daily hot meal to help support disabled people and older residents in their own homes, according to the Association for Public Service Excellence.12 Two years later, after half a decade of funding cuts, fewer than half of councils were still providing a Meals on Wheels service.13
Meanwhile, it’s becoming increasingly common for the ‘lifeline’ service – an alarm that allows disabled and older people to call for help in an emergency – to come with a charge. Before the cuts, Rachel used to wear a chord around her wrist – a safety net connecting her to her care company and ambulance service. But in 2016, her council told her she’d have to start paying £100 a month for the privilege. ‘They suddenly took it away,’ she explains. When Rachel’s heart isn’t getting enough oxygen, she faints. Without her lifeline, nowadays, she’ll wake up to find herself on the floor with no way to call for help. Instead, she has to slide herself across the floor and find a blanket to cover herself in. ‘Then I reach my mobile to call a neighbour,’ she says. When we speak again, a charity is helping Rachel train an assistance dog to act as her new alarm – philanthropy and a pet filling in the gaps where the state once was.
This shift to charity to plug the gaps of social care cuts is not an accident; it has been actively encouraged in recent years. In 2018, the government launched a new ‘big society’ – style strategy encouraging the public sector and charities to play ‘a bigger role in the provision of public services’, including social care.14 Reminiscent of David Cameron’s failed Big Society initiative launched in 2010 as cuts to public services began to bite, ministers pitched it not as a sign of government failure, but as a compliment to the British plucky spirit. In the words of the civil society strategy launch paper, ‘All this is happening because of the resourcefulness of the British people.’15
Similar normalization of volunteerism is now commonplace. As the potential loss of EU migrants from Brexit began to hit, ministers warned in 2018 that women (notably, not men) might have to ‘give up their jobs’ to look after their ageing parents and disabled loved ones in the case of care worker shortages.16 At the same time, a number of squeezed local councils admitted that if central government didn’t step in with a long-term funding solution, they might not even be able to meet their legal duties, such as social care provision. East Sussex County Council, for example, stated that even services for ‘vulnerable adults’ could be ‘unaffordable’ by 2021, explaining that ‘families and neighbourhood voluntary groups would have to take increasing responsibility’ for supporting those people who would no longer qualify for social care.17 It marks a blatant and unprecedented roll-back of the state.
The cultural image of a disabled person is traditionally helpless: at best a Tiny Tim–type brave figure, at worst a weak and passive individual, in need of being looked after by the non-disabled. It was a fitting rejoinder then that, just as with cuts to the ‘welfare’ budget, it has been disabled people at the forefront of the fight against social care reductions.
Take the Independent Living Fund (ILF) – a standalone fund issued by central government. This fund was the standard method over almost thirty years to help 18,000 of the most severely disabled people in the country to live in their own homes, work and be a part of the community by hiring personal assistants for their own care package. But in 2014, as a wave of austerity measures hit, the government announced it would be closing the £320 million fund and transferring all ILF’s users to local authority social care provision. Unlike the ILF, the money would not be ring-fenced so there was no obligation for cash-strapped local councils to spend it on former ILF recipients rather than any other council duty – say, rubbish collections or potholes.
The politicians so keen to axe the fund were fully aware of the consequences of their actions: half the local authorities that responded to the government’s own ILF consultation said the move to local councils would result either in ‘significantly reduced’ care packages that would affect disabled people’s ability to enjoy ‘any quality of life’, or in their being removed from their homes and put into residential care.18 I reported on a protest outside the Department for Work and Pensions (DWP) headquarters in 2014 as angered ILF recipients lobbied with placards and chants. Scrawled on a makeshift cardboard prison cell wrapped around a protester’s wheelchair, read the words: ‘Without support, we become prisoners in our own homes.’
With protests came legal proceedings that went all the way to the High Court, as disabled campaigners fought through the courts for two years to save the ILF – and with it the principle that, even in tough economic times, disabled people in Britain have the right to independence. The court of appeal even quashed the government’s first attempt to close the fund – finding that the DWP had given such little consideration to disabled people’s right to equality and ‘ability to take part in public life’ that it actually breached the Equality Act.19
In the end, however, despite legal and direct action, the ILF was axed in 2015;20 within months, its former users across the country – now solely reliant on their local councils – began to have their care packages cut.21 Two years later, in the summer of 2017, disabled activists used their wheelchairs to block the MPs’ entrance to the House of Commons, demanding the restoration of the Independent Living Fund.22 The chant went out: ‘This is a message to Theresa May – while we have no justice, you will have no peace.’
Historically, disabled people in Britain were deprived of the right to live independently. Throughout the last century, we were routinely housed in out-of-town institutions, from schools for Deaf and blind people, and lifelong care facilities, to mental asylums. The term sometimes used to describe this – ‘warehousing’ – creates an image of the dehumanization at work here: disabled people stored under one roof as a way to reduce the costs of their care. This was often said to be for ‘their own good’ and for the good of the rest of the public, with disabled citizens segregated from a non-disabled society that saw them as freaks, burdens or shameful secrets to hide away. Though this was often a private arrangement within a family, it was approved by the heart of the British establishment; for example, in 1913 the Mental Incapacity Act passed, seeing 40,000 men and women locked away on grounds of their being ‘feeble-minded’ or ‘morally defective’.23
In her 2010 New Statesman essay ‘When the disabled were segregated’, journalist Victoria Brignell describes vividly what life was like in these institutions.24 She recounts how, at one facility in the 1950s, patients with mental health problems could only have one bath a week and toilets only had half-doors so people’s feet and heads were visible. At another, patients were not allowed out and could not have visitors. If they wet themselves, they were punished. Staff would physically assault patients in the toilets at night. Others recounted being banned from wearing their own clothes and instead having to help themselves from one large cupboard on the ward.
This sort of dehumanizing practice towards disabled residents was standard, with some institutions adopting humiliating practices as part of their admissions process. Brignell recounts how one care home for people with learning disabilities used to forcibly cut young women’s hair when they arrived. If residents put up resistance, they were tied to a chair while the cutting took place and then locked in a dark room for up to half an hour before being injected with drugs.
As I grew up as a disabled teenager planning a life of university, a career and my own home, such horror stories appeared relics of the distant past, a world away from the disability equality I was repeatedly told now existed in my country. But there was not as much space between us as I had hoped. The institutionalization of disabled people was common in Britain as recently as the 1970s and continued until the early 1980s, barely a couple of years before I was
born. Those who escaped this fate were often still not afforded the chance to live independently, but were instead largely left to languish at home into adulthood with their families, seeing out the decades in their childhood bedrooms.
Over the next forty years, disabled campaigners fought for the basic right to independent living. Against a culture that largely viewed disabled people as children to be cared for, or dehumanized as objects to be put away, the independent-living movement in Britain fought for disabled people to be treated as ordinary adults, with the same rights to freedom, dignity and choice as anyone else. It was throughout the 1970s that this battle really took hold. While legislation such as the Chronically Sick and Disabled Persons Act 1970 – dubbed ‘a Magna Carta for the disabled’25 – for the first time required local authorities to provide disabled people with support in their own homes, and equipment, it was pressure from RADAR (the Royal Association for Disability Rights), a leading disability organization formed in the 1970s to remove the barriers facing disabled people, that further fought for these rights to be implemented. They set up advocacy support in the 1980s to help disabled people get the care they were entitled to.
The UK’s first Centre for Independent Living was opened in 1984 and over the subsequent decades, scores of such organizations were born, each run by disabled people, employing disabled people, and providing the practical and campaigning support to enable thousands to live independently, as well as tackle other basic needs such as housing, access, employment and education. By the mid-1990s, the Community Care (Direct Payments) Act had launched the first use of direct payments – the groundbreaking scheme that enables disabled people to organize their own social care rather than the local council – while the introduction of the Care Act in England in 2015 placed local authorities under the powerful obligation of providing a care package that ‘promotes’ an individual’s well-being.
That this battle had its origins as recently as forty years ago simultaneously shows both how fragile Britain’s disabled people’s gains are and creates the illusion that we’re currently experiencing a heyday for disability equality. In reality, we are witnessing a piecemeal dismantling of disabled people’s right to independence, in which our freedom is sold to the highest bidder. Passing the Care Act at the same time as launching unprecedented cuts to social care meant that the promise to ‘promote’ disabled people’s ‘well-being’ resulted in the opposite.
A third of disabled people say the level of choice and control they enjoyed over their support has actually ‘reduced or reduced significantly’ since the Care Act came in, according to research by charity In Control.26 Well over half (58 per cent) say their quality of life has ‘reduced or reduced significantly’ in the past year, with many describing how the hours of work or volunteering that they used to be able to do had been shrunk and others reporting that their support was now restricted to personal care;27 that’s a life steered around toilet visits but no help to see a friend in the pub. Linda Burnip, co-founder of the campaign group Disabled People against Cuts, puts it frankly to me: ‘These cuts are rolling the right to independent living back decades.’
‘Independent living’ is in many ways a political euphemism for control – the right for disabled people to have the same choices over our own life as anyone else. Yet as budgets were cut to the bone, I began to hear from more and more disabled people who were being forced into rigid care packages by their councils or local healthcare provider, the clinical commissioning group (CCG). They told me of horrific results: such as a group of young men with cerebral palsy in supported housing who reported being made to ‘share care’ – literally, share care hours and assistants between them – because they live under one roof. Brothers with a muscle-wasting disease described to me how they were unable to go to university because they were given one care package between them; due to the fact their shared personal assistants can only be in one place at a time, if one brother went to lectures, the other would have to as well.
There is no starker example of this than the post-2010 drive to move disabled people back into care homes. While Britain appears to have progressed from the days of ‘warehousing’ disabled adults in institutions, a cocktail of cuts to social care and the NHS teamed with a lack of accessible housing options means that recent years have seen a number of disabled people quietly moved out of their homes and into residential care, with thousands of others threatened with a similar move.
As funding for care was hacked in 2017, a new funding cap was rolled out in at least forty-four CCGs; in essence, creating an ‘upper limit’ on the amount of money spent on care in a person’s home, even if it’s not sufficient to meet their care needs.28 Continuing healthcare can be arranged in a care home, a nursing home, a hospice or a person’s own home. But new funding caps meant that many disabled people could suddenly be prevented from living at home with their families despite being well enough to do so. By 2018, disabled people were already receiving warnings from CCGs that if they couldn’t live on the newly capped funding for their home support, they would be moved into residential care.
This is as alarming as it sounds: one day, a forty-something woman is living in her own bungalow with her husband, and the next she’s put in a care home with strangers. The EHRC warned in 2017 that this cost-cutting means that disabled people in the UK face being ‘interned’ in care homes, in what amounts to a potential breach of their human rights.29 Less than a year later, a dozen NHS organizations faced legal action over what the EHRC called ‘discriminatory’ policies around pushing disabled people into residential care.30
As local government had its budgets squeezed, disabled people who receive care funding from their local council rather than CCG began to find themselves in a similar position. It is legal for local authorities to take use of resources into account, as well as peoples’ choices and needs, meaning that when an individual’s home care gets to the same price as, or is more expensive than, a residential care home, councils are allowed to look at alternatives.
For a minority, a care home can be a suitable arrangement they have chosen, but for many others it is a nightmare, one that is born not from a free choice of what’s best for the individual but is the result of cost-cutting imposed by council officials. As one young disabled woman fighting to stay in her own home put it to me, ‘It’s terrifying. A stranger that’s never met me can make a decision about my life.’ Shipping off disabled people into care homes is the inescapable consequence of a political climate that puts a price tag on certain people’s lives and, at the same time, fans the belief that disabled people are a cost that the so-called hardworking taxpayer shouldn’t have to pay.
At only thirty, Pete was forced to move into a care home. He has cerebral palsy and scoliosis of the spine, and uses an electric wheelchair. For eight years, he lived independently with the support of personal assistants in a flat he owns in Portsmouth. The council provided him with funding for twelve hours’ support each day. ‘Slowly but surely they cut it back,’ he says. By 2016, his care package was reduced to just four visits a day. That entitled him to help with getting up, someone to make him lunch, another to make him dinner, and being helped to bed. With the new skeleton care package, he had no help to get out of the flat to see friends, while being left alone for hours at a time led to his health deteriorating.
Hernia of the oesophagus means Pete needs anti-sickness tablets before each meal – he has a tube inserted directly into the stomach because he can’t take medication by mouth. But the cuts to his care means he no longer has anyone to help him with it. ‘After each visit I was feeling sick all day when they’d gone and the only thing I could do was going to hospital because it was safe,’ he says. ‘I was frightened of choking on my own vomit.’
Living like that, Pete says, was like ‘being in limbo’: he was still in his flat but he was repeatedly going in and out of hospital because of the toll of social care cuts on his health. Pete asked the council for more care slots but he was turned down; he was
told four slots are the maximum anyone could have because of their squeezed budget. On paper, disabled people such as Pete are still being afforded the right to live in their own home, but in reality the care is cut to such a threadbare level that remaining there has become impossible.
In the end, Pete felt so unsafe in his flat without an adequate social care package that he had to take the drastic move of accepting a place at a care home. In fact, Pete was placed in a residential care home designed for the elderly. ‘I’m the only one here that’s young,’ he says. This is far from rare. A Freedom of Information request submitted by the MS Society and Care and Support Alliance (CSA) in 2017 found that 3,300 working-age disabled people in England are living in care homes for the elderly.31 The MS Society found that reasons ranged from there being no accessible housing in the community; the disabled person being unable to afford, or to access grants, to adapt their own inaccessible home; to older people’s homes being seen as the only place available in the area to adequately meet their complex health needs.
Pete has no complaints about the care home – ‘The care is exemplary,’ he says – and he’s relieved staff ‘allowed me to have Sky in my room’ to watch football. ‘I’m a massive Pompey fan,’ he says. But it’s hard not to feel anger that for years he has lived in his own home but, simply due to care cuts, he’s now had his independence taken. ‘It’s just so disappointing you can’t get this level of care in the community any more because of the government cuts,’ he says. ‘In the future I can see no disabled person living independently and us all being in care homes regardless of our age.’
With little hope of things changing, now thirty-one, Pete tells me he’s had to put his flat on the market. ‘I wish I was in my own place still but I have to look after my own health,’ he says. ‘The government may take away my flat but they’re not taking away my health and dignity.’