Crippled

by Frances Ryan

  The danger is that, as cuts to services deepen in the coming years, the care burden shifted onto children is only going to further increase, while the normalization of it will mean it trundles on with little pressure for change. Local authority leaders warned the children’s commissioner survey in 2016 that cuts to council funding meant resources were increasingly focused on children at risk of neglect or abuse – effectively meaning that support for other children, including young carers, would be severely limited.58 Two years later, when a near bankrupt Somerset County Council launched proposals to try and stay afloat, it announced a £240,000 cut in help for young carers. It was only after local outrage that officials said the move would be ‘deferred and reviewed’.59

  Like many child carers, as things stand, it’s a charity rather than the state that gives Georgia a break. Action for Children organizes days out for Georgia and her fellow young carers – theatre, trampolining and adventure play – as well as coming into her school for one-on-one counselling. It’s a chance for her to have a confidential ‘moan about me’, Sarah smiles. The only problem is, she says, there are too many children who need help. ‘There’s so many [other child carers at the school], sometimes Georgia doesn’t get to see the counsellor.’

  CHAPTER 6

  Children

  Two years after David Cameron brought in the first wave of cuts, the Daily Mirror ran a front page featuring a picture of a child weeping from hunger to illustrate its story on food banks in Britain.1 It quickly gained attention, becoming one of the most infamous media stories of the austerity age. This was partly down to controversy (it turned out it was in fact a picture of a child taken in San Francisco in 2009)2 but also to how it unflinchingly depicted the harm that austerity policies were causing. Cuts that had previously widely been dressed up as cold economic prudence or a fair way of treating costly benefit scroungers were now human suffering brought to the breakfast table.

  To put it another way, even the large swathes of the public who were content to support, say, benefit sanctions for the so-called feckless unemployed would likely pause at harming a child. In a climate that increasingly ranked our fellow citizens as undeserving, children were the definition of innocents – the last group in society many of us would choose to see go hungry. Sick and disabled children, by extension, in theory should garner this impulse even more. A society that professed to, at a minimum, always protect ‘the most vulnerable’ would surely not pull back support for disabled infants.

  In fact, between 2012 and 2017 Britain’s child safety net was repeatedly cut, from freezing child benefit to introducing the ‘two-child-limit’ child tax credits. To get a picture of how much progress this rolled back, the Resolution Foundation think tank calculates that by April 2019, for a second child, the benefit freeze introduced by George Osborne meant child benefit was worth less than when it was first fully introduced in 1979.3

  Worse still, it was children with disabilities and chronic and life-limiting illnesses who took the brunt of such cuts, from the transition to Universal Credit to the loss of council tax allowance targeting parents of disabled children. The roll-out of Universal Credit alone will see a £175 million cut to child disability payments, with thousands of families with disabled children set to lose £1,750 a year under the new system.4 The reality of such measures is ministers taking income from families who were already some of the poorest in the country. Any parent knows how expensive it is to have a child but this rockets if they have a disability. It is calculated to cost £215,553 to raise a disabled child to adulthood – 43 per cent more than for families with non-disabled children.5 Parents are forced to find money for everything from wheelchairs to hoists, while often balancing their caring responsibilities around reduced hours (and pay) at work. A third of disabled children in 2018 subsequently live below the breadline – that’s 400,000 kids – according to the Joseph Rowntree Foundation.6

  Look behind the statistics and these are disabled children whose families are often barely able to afford food. Research by the charity Contact in 2018 into the costs of childhood disability found that 80 per cent of families had ‘gone without’ in the previous year.7 This included children wearing scruffy clothes because their parents cannot replace them or missing out on hospital appointments because they could not afford the transport to get there. A quarter had skipped meals. A fifth had gone without heating. Four in ten had even gone without birthday or Christmas presents.8

  Rather than social security being the safety net to catch them, the austerity age saw the so-called bloated ‘welfare’ bill begin to actively push these families further into hardship. Over a third of parents with disabled children surveyed by Contact in 2018 said that changes to benefits in the past two years had left their family worse off, with the large majority saying this was damaging their mental health and personal relationships. ‘Benefits should be there to help people, not make us feel like scroungers and thieves. We are missing quality time with our terminally ill child all because of money,’ said one parent. ‘I am extremely worried about how me and my children will survive in this current environment. I feel that we have been sacrificed and scapegoated to pay for the financial crash,’ said another. ‘There is no one to fight on our behalf. The future is hopeless.’9

  It’s not hard to understand this fear. By 2021, the Equality and Human Rights Commission estimate an extra 1.5 million children will have been pushed into poverty as a consequence of the government’s austerity programme, with disabled children among the worst-affected.10 While the wealthy and healthy are largely cushioned, low-income families coping with disability are lined up for the biggest hit: households that include a disabled child are set to lose an average of £3,300 a year by 2021 once tax and benefit changes have been cumulated.11

  Go to your local town centre and austerity is made visible. In the years after the recession, the exodus of the high street was a familiar sight; hollowed-out retail premises left vacant or replaced with pound shops and charity stores. A mile down from my house still sits a large pub last occupied almost a decade ago; windows boarded up and the golden title above its entrance now missing alternate letters. But if you want to really understand how austerity has gutted our communities look no further than the pulverization of services for children and young people.

  Think of public spaces used by anyone from toddlers to teenagers and, odds are, it’s been decimated by cuts. Hundreds of playgrounds have closed across England in recent years;12 as an alternative, some councils have begun to issue a charge to play.13 Youth centres across the country are disappearing as local authorities move to shred youth budgets by as much as 90 per cent.14 A minimum of a thousand children’s Sure Start centres – the cornerstone of the past Labour governments’ social mobility drives – have closed their doors.15 Swathes of libraries have followed suit – staffed by volunteers the odd day a week or morphed into centralized ‘hubs’ miles from neighbourhoods. Even parks – their budgets falling on average by 40 per cent since 201016 – are increasingly shut off from families as cash-strapped councils pull back maintenance or are forced to sell off green spaces entirely.

  Few kids, though, have been hit harder than those with disabilities. While the number of disabled children in the country is increasing – standing at 33 per cent more than a decade ago17 – fewer than ever receive support from the state. Research by the Disabled Children’s Partnership, a coalition of sixty charities and organizations, in 2018 found a £1.5 billion funding gap for services needed by disabled children, resulting in tens of thousands missing out on help that might enable them to ‘eat, talk, leave the house, have fun and attend school’.18 Only a few months later, more than 120 national organizations, including children’s charities, disability groups and teaching unions, joined forces to warn the government that services for children and young people were ‘at breaking point’, including healthcare, social services and education for disabled children.19

  As if it was not enough that disabled kids were seeing the
ir benefits shrink, deep cuts to local authorities were removing anything from health provision and social care to respite centres.

  Satnam has put on two stone from stress since her daughter, Gurpreet, had her respite removed. Fifteen-year-old Gurpreet has a rare chromosome disorder resulting in learning and multiple physical disabilities: among them, five different heart conditions, chronic renal failure, double incontinence, partial blindness and hearing loss. She’s been a patient at Great Ormond Street Hospital since she was born and has had seventeen surgeries over her young life, from open-heart surgery to spinal fusion. ‘With all this going on, Gurpreet is the happiest, cheekiest girl you could meet,’ Satnam, forty, says from her small town in Hertfordshire.

  Satnam’s husband was recently jailed for abusing her and it is just her at home to care for Gurpreet and her two other young children. It is a 24/7 job: feeding her daughter through a tube, changing her, giving her medications. On top of it all, the house is not accessible for Gurpreet’s wheelchair so the living room acts as her makeshift bedroom: a special orthopaedic bed, surrounded by syringes, special feed bottles and changing equipment.

  For fourteen years, the local respite centre, Nascot Lawn, has been, in Satnam’s words, ‘quite simply my family’s lifeline’. Somewhere reliable with medical supervision that meant Satnam could take a break while knowing her daughter was happy and safe. While childcare and nurseries can be impossible for a child with disabilities, respite centres – filled with trained staff and a host of medical equipment – are often the only place a parent like Satnam can rely on. Every month, Gurpreet had four overnight stays at Nascot; a chance for Satnam to take her other two children to the seaside, to attend Gurdwara prayers to give her ‘strength’, or, as she puts it, ‘to recharge and feel fresh and able to carry on caring’. A couple of months before I first speak to Satnam, Gurpreet has had complex surgery on both her feet – leaving her in double plaster from her toes to her knees that’s only just come off. The time in the respite centre was Satnam’s only break. ‘I feel like for a few hours a weight is off my shoulders. I’m not constantly thinking ahead, feeds, bath, medicines,’ she says. ‘It kept me sane.’

  But in the summer of 2017, the local clinical commissioning group told Satnam and the other parents that because of budget cuts they had to pull Nascot Lawn’s annual £600,000 funding. Soon enough, Gurpreet’s respite was cut down to only two nights across four months. In July 2018, it was stopped entirely.

  For Satnam, the end of respite care ‘felt like a dream I had woken up from’. It immediately impacted every aspect of her and her family’s life. ‘Having no proper scheduled, reliable, competent respite is like being on a merry-go-round continuously without stopping,’ she says. Her parents do their best to help but both are in their late sixties and she is now constantly tired and emotionally strained. ‘It really feels like my daily routines are never-ending. I can’t plan anything. Caring non-stop is taking every ounce of strength I have.’

  The centre’s closure means Satnam has lost not only her only break but also the safety net for emergencies. When Satnam needed urgent surgery in 2015, it was Nascot Lawn that made it possible; they took Gurpreet in for four nights and then extra weekends to allow her mum to recover. ‘Nascot was my back-up always,’ Satnam tells me. ‘Now we have nothing.’

  What has happened to Gurpreet in Hertfordshire is being echoed across the country, with parents fighting local respite closures from Birmingham to Winchester. Since 2011–12, more than half of local authorities have cut spending on respite services for families with disabled children.20 Take inflation into account and that shoots up to 75% of councils cutting their short-break provision in real terms.21 A report by Contact in 2018 warned of the ‘devastating impact of inadequate health and social care services’ on families, calculating that a quarter of parents of disabled children provide 100 hours of care a week to plug the gap – equivalent to three full-time jobs.22 In the coming years, the consequences could be devastating: the Disabled Children’s Partnership warned in 2018 that such severe lack of overall funding risks ‘a tsunami of admissions’ of disabled children having to go into residential care as unsupported parents cease to cope.23

  It has resulted in a nationwide struggle between disabled children and the state that is meant to protect them. Families at their wits’ end fighting for vital support from a system being starved of resources by central government. What’s more, the fight to keep local respite centres open has happened at the same time as other services for disabled children, like school transport, are also being pulled. The law states that a child with a disability that prevents them walking to their nearest suitable school should get free transport help regardless of distance (non-disabled children must live more than three miles from their school to be eligible). But as cuts deepen, charities report that families whose child is clearly eligible for school transport are being refused help by their councils, while other local authorities are assigning unsuitable and unsafe transport to disabled children.

  I spoke to a mother with a young son with physical and learning disabilities who lost his place on the school minibus with special seats, harnesses and trained guides. Instead, the council offered him a free bus pass by councils; that’s a four-year-old wheelchair user who is non-verbal, incontinent, struggles to control his body and cannot understand instructions told to use a standard bus alongside commuters and students. The council only reinstated his specialist travel after an official appeal. Another told me of her young child being forced to take an almost three-hour round journey to school after specialist transport had been cut and parents were left in ‘chaos’. The child arrived home distressed and sitting in soiled clothes.

  This is the sort of inhumane and short-sighted cost-cutting that’s come to characterize so many of the reductions to disability support. With safe transport, disabled kids can get an education while their parents can go to work and pay tax. Take the transport away, research by Contact in 2017 found, and almost half of parents, mostly mums, have had to reduce their working hours or not work at all simply because of school travel arrangements for their disabled child.24

  Parents at Nascot Lawn opposed the closure of the respite centre for over a year; sleep-deprived mums and dads lobbying local officials, protesting outside council buildings, and even launching two successful judicial reviews. Still, the funding could not be saved and, after thirty years of serving the community, the centre shut its doors in November 2018. Without Nascot Lawn, Satnam has been offered alternative arrangements at another centre across the county. But it takes Gurpreet seventy-five minutes to get there on the school bus and the support hours work out considerably fewer than what Nascot provided. Worse still, staff there are not trained to provide even basic medical procedures, such as replacing the ‘button’ of the tube Gurpreet needs for food and liquids when it pops out. Instead, whenever this happens, the new centre will have to take her to the nearest hospital.

  ‘Gurpreet has spent so much of her life in hospital that she becomes extremely worried, anxious and physically tries to gag when she goes to hospital,’ Satnam explains. ‘Because of her learning disability, it’s very difficult to explain to her what is going to happen. If they took her to hospital, she would never want to go back to respite again.’ Still, Satnam accepted the offer of a place at the new respite centre. She is terrified that if she turned down this option, she’d be left without any respite at all and would not be able to cope. When we next talk, Gurpreet has just had her first night at the new centre. ‘She cried and kept asking for me,’ Satnam says.

  This is respite care in name only; rather than being able to have a breather, every time Gurpreet goes in for respite, her mum is effectively ‘on call’ in case she needs help. Gurpreet is due more surgery in a month – this time, a complex dental procedure – and despite her relentless efforts, the stress of it all on Satnam is clear.

  Families like Satnam’s often show a superhuman sort of strength but it’s not hard to se
e that if the state cuts the support they rely on, they can become deeply vulnerable. Carers UK research in 2015 found that almost eight in ten family carers have anxiety and over half say they have depression as a result of their caring responsibilities.25 In the years after austerity deepened, it was not unusual for me to hear from desperate carers; many of them losing access to local services or benefits and struggling to stay afloat. The suicide of thirty-three-year-old mother Jane Kavanagh reported in the Daily Mirror in October 2018 was one case that gained much attention on social media at the time. Jane was sole carer to her fifteen-year-old daughter, who needed 24/7 care due to a severe degenerative condition, but had no respite breaks, no social care, not even adaptations to her inaccessible house for her daughter’s wheelchair.26 In April 2018, she dropped off her daughter and other child at her parents’. A few hours later, her neighbours found Jane’s body. As Satnam puts it to me: ‘Austerity is punishing the wrong end of society. The fall-out from breaking us will be felt in the longer term.’

  As recently as sixty years ago, educating disabled children in mainstream schools in Britain was still almost unheard of. Shipped off to so-called ‘special schools’, instead of being nurtured, their treatment was often abusive. In Pride against Prejudice, author Jenny Morris recounts the story of one disabled woman who spent her childhood living in various institutions in England in the 1940s and 1950s.27 In one place, disabled children had to go outdoors at 6 a.m. every morning and weren’t allowed to put bedclothes over themselves at night. For half the day they were not permitted to speak. When they were sick, they were expected to eat their own vomit. If staff took a dislike to a child they would hold her under the water in a bath until she started to go blue, while a group of children would be assembled to watch what was happening. On one occasion, the woman recounts, a staff member held a child under the water for so long that the child drowned.