Listen to the Conservatives promise the electorate £12bn of social security cuts and you have an insight into the thinking that has plagued the last five years. Cameron and Iain Duncan Smith have ended this parliament as they began: demonising disabled people and the chronically ill as expensive drains on the rest of society.
The coalition’s cuts have fallen 18 times harder on severely disabled people in poverty than on the average citizen. Disabled people are losing £28bn of support – with individuals hit by up to six different cuts.
It says something about the scale of this that what you’re about to read does not cover every measure this government has taken against disabled people – there are simply too many to list. Think disappearing respite care for families with severely disabled children, the failing Work Programme, or proposed student allowance cuts that stop young disabled adults being able to go to university.
From the “fit to work” tests to the onslaught of benefit sanctions, the last five years has witnessed the dismantling of disability care, work, and housing support.
Here are eight coalition policies that have hit disabled people:
1. Employment and Support Allowance (ESA)
Ask a member of the public if they are aware of any of this government’s disability policies and it’s likely one name will come up: Atos. By the time last March the private firm had quit its £500m contract administrating the coalition’s now infamous “fit to work” test – the assessment used to determine if a disabled or chronically ill person is eligible for the unemployment benefit, Employment and Support Allowance – it had become the recipient of unprecedented protests by disability campaigners and an avalanche of slating media headlines: from assessors asking an amputee if his arm would grow back to judging people “fit to work” only for them to die a few weeks later.
But it would be to miss the core of the past five years to think Atos – rather than the government itself – created this crisis. Atos – and its replacement, Maximus – are the private sector monkey to the Department for Work and Pension’s (DWP) organ grinder. It was the DWP that designed the Work Capability Assessment and it’s the DWP who – despite a committee of MPs calling the test not fit for purpose – have continued to defend it.
Last year, it emerged that people with degenerative conditions – conditions that, by definition, are only going to get worse – were being judged by the WCA as likely to “recover” enough to look for work. A third of people with disabilities such as Parkinson’s and multiple sclerosis are being denied the full version of ESA and pushed into “work-related activity” – the group expected to be well enough to work, that gets less money, and is routinely sanctioned.
This is an assessment that is now quantitatively proven to inflict damage to disabled people’s bodies and minds. Over 60 per cent of disabled people going through the work capability assessment report being in pain afterwards. Others say their condition was made worse or their recovery delayed. One claimant surveyed by Leonard Cheshire Disability, who has progressive rheumatoid arthritis, said she left her appointment “feeling absolutely awful and suffered a lot of pain in the following days”. She went on to have a stroke a few weeks later.
Keep this in mind when noting that the change the government decided to make to ESA was to reduce the support many going through the process could receive. By mid-way through the coalition’s time in government, the DWP had added “time limits” to how long some chronically ill or disabled claimants could claim benefits. This was part of a wider attempt to enact conditionality to the benefit system (see number eight). As I reported in 2013, 700,000 people with long-term sickness or disability had their ESA taken as a result. The means test brought in was only £7,500 for this change, leaving someone earning barely eight grand a year having to support themselves and their ill partner.
Asked on the election trail where the Conservatives would get their £12bn “welfare savings” from, David Cameron has pointed to “getting people off” ESA. “Part of this is continuing with a programme that we’ve had…,” he told the BBC. “We’re going to continue with that, successfully reducing welfare…” Pain, scandal, and poverty is apparently “success”.
2. Personal Independence Payments (PIP)
At the same time as the crisis with ESA, the government decided to scrap a second key disability benefit: Disability Living Allowance (DLA), replacing it with the “tougher” Personal Independence Payments (PIP).
As of 2012, 3.2 million disabled people were receiving DLA to help pay for their additional care or mobility needs. It does not take a genius to predict that re-testing millions of disabled people is an enormous undertaking – and one that, by nature of being a benefit that people use to feed themselves or leave the house, would need to be done carefully and competently.
A year into the reform, parliament’s public spending watchdog was calling the government’s handling of PIP “nothing short of a fiasco” – with widespread delays and reports of claimants being hospitalised due to the stress of the process.
The DWP have been forced to delay the national rollout (many areas of the country are still on DLA), as well increase predictions for how long people would have to wait for support or even to get an assessment. Currently, almost 200,000 disabled and chronically ill people in “reform areas” are stuck in a backlog waiting to be assessed. Guess who the government outsourced the job to for £400m? Atos (and second private firm, Capita).
What is particularly troubling with PIP is that – due to the flaws in the assessment itself – these backlogs are essentially a long wait to nowhere. Unlike DLA, Personal Independence Payment is a points-based assessment, awarded on “descriptors” on a range of activities (such as washing and bathing, or communicating verbally) and only has two rates (DLA had three). Campaigners warned from the offset that, just like with ESA and the Work Capability Assessment, this would mean a crude, inaccurate assessment. Disabled people are now finding themselves waiting a year for help, only to be told they are not eligible for the new benefit, despite having severe – and blindingly obvious – needs.
Paula Ranking*, 61, from Runcorn, Cheshire, applied for PIP back in October 2013. She has fibromyalgia and depression, leaving her with chronic fatigue, poor memory, and severe muscle pain. It took her until June 2014 to be given an assessment and two months later, she was told she had been rejected for the benefit entirely.
After requesting a copy of her assessment report four times in order to appeal the decision, she tells me she saw it was “full of lies and omissions”.
“I couldn’t believe what I was reading… The assessor made out I was fit and athletic,” Paula says. “She said she watched me walk 60 meters to the office with no problem but I was in absolute agony. It was early morning and my painkillers hadn’t kicked in.”
“She pointed out in her report that I crossed my leg at one point. I did because my calf muscle felt like it was having a knife twisted in it. I let out a yelp when I grabbed my leg but she didn’t mention that. I could go on and on.”
Rather than being a necessary reform, the scrapping of DLA – and introduction of PIP – was brought in on the (false) premise that vast numbers of disabled people were making unnecessary and “fraudulent claims”. Before anyone had actually been assessed, Iain Duncan Smith was announcing an estimated half a million people would lose their entitlement under PIP – making a “saving” of around 20 per cent, or £2bn, of the current scheme. Instead of an anomaly or a horrible accident, there is a lurking feeling that benefit rejections like Paula’s are exactly what was intended.
I think of this as Paula tells me she is “terrified” that she has no one to go with her to her appeal – and again, a few weeks later, when she emails me, upset to say she arrived at her appeal only to be told it was the day before. Due to the memory loss and fatigue that are symptoms of her illness, she had got the dates mixed up. There was no support in place to her help, despite the fact her illness leaves her cognitively unable to deal with the process and physically needing up to eighteen hours sleep a day.
A month later, Paula emails to tell me she’s finally been awarded the benefit – at the standard rate.
“I missed out on the rest due to the poor help I received filling the form in,” she tells me. “The judge did say he had gone on my doctor’s reports and disregarded the Atos report.”
It’s hard to imagine this is much of a reprieve. Paula’s been £190 short on her mortgage each month for the last year.
“Don’t believe all you hear about everything getting paid for on benefits,” she says. “I could lose my home.”
3. Bedroom tax
Even in the anti-benefits climate that has developed, the image of a disabled person being evicted does not sit well with the public. The bedroom tax – which cut the housing benefit of social tenants deemed to be “under-occupying” their home – saw what was a flagship coalition policy of “fairness” and “cost-cutting” turn into arguably the most unpopular measure of the parliament.
Almost two thirds of the tenants hit by the policy are from households that contain someone who has a disability – that’s over 400,000. It didn’t take much to realize that a policy penalising people for needing extra space would end up hurting the disabled and chronically ill. The government’s own impact assessment told them.
Back at the start of 2013, before the policy came into force, I reported the reality of cutting benefits for having a so-called “spare room”: parents of grown disabled children losing money for storing oxygen cylinders and adult sized nappies, to wheelchair users told to leave a home with twenty years’ worth of adaptations.
What has followed in the two years since has been a lesson in how not to conduct social security. Only 6 per cent of people affected by the bedroom tax have “downsized”, largely down to the fact there was never enough smaller properties for them to move to. Local authority Discretionary Housing Payments – held up as the safety net to protect disabled tenants – have actually ended up more likely to be given to non-disabled tenants. Savings have been nominal – and have only come off the back of pushing some of the most disadvantaged people in society into debt, rent arrears, and worsening health.
The bedroom tax has produced a sense of “hopelessness verging on desperation”, research in the Journal of Public Health found last month – that sort of widespread, every day pain that has the deepest effect.
If the policy’s architects needed something more graphic, they could perhaps look to the case in the Liverpool Echo this week: a 32 year old who had all his toes amputated after being forced to spend last winter sleeping in a tent. Mitchell Keenan, from Skelmersdale, in West Lancashire, was evicted from his four-bed house because the bedroom tax meant his family could no longer pay the rent. He was diagnosed with frostbite six weeks ago when his family noticed his toes had turned black. His 62-year-old father, Keith, also evicted, has malnourishment, scabies and dementia.
4. Council tax
The bedroom tax may have grabbed the headlines but it came at the same time as another, equally appalling hit on the ability of the so-called “vulnerable” to pay the rent. From April 2013, the government slashed funding for council tax benefit by £500m, leaving cash-strapped local authorities to decide how the remainder should be distributed. The result? 2.3m families previously exempt now have to pay at least a portion of their council tax – that’s the poorest, the disabled, and carers.
Almost 300,000 of these people have also been affected by the bedroom tax. That’s the added kick of the coalition’s cuts: they have been arranged in a way that means disabled people have lost multiple strands of support at once.
The consequences of a policy decision like cutting council tax support are devastating and they are fast. Council tax is one of the few debts that carry a threat of prison. Miss a payment and the arrears mount quickly. Before you know it, a court summons has arrived at your home and there is talk of eviction and re-possession.
Susan Smith, 50, has council tax arrears of over £1,300. She’s lived in her flat in London for fourteen years and tells me she had never had to pay council tax before the cuts to support came in last year. Susan is an example of the sort of person the state used to protect: she has mental health problems – what she describes to me as “chronic mental and emotional fatigue” – severe enough to result in repeated hospitalisation. She was already struggling to keep a roof over her head before the month dubbed “Black April” kicked in, with rent arrears of almost £5,000 and an ongoing eviction threat. The council tax changes have piled on more debt and more psychological pressure.
“I know at times like this I’m vulnerable to episodes,” she tells me. “[I’ve been] detached, incapable of going to the shop, and neglected eating properly for days, feeling the need to stay in bed and rest my brain.”
Her council, Haringey, employed an “enforcement agency” to “remove and sell off” her goods unless she pays them £10 a week from her Disability Living Allowance – the benefit awarded to help her with the additional needs that come with her illness.
“I’ve experienced relapses through [the] stress and anxiety [of it], where I’ve not been able to function properly,” she tells me. “[So I haven’t been able to] respond effectively to threatening letters and gather the information they require.”
Despite Susan agreeing to pay them £40 of her disability benefit a month, the council is continuing to threaten her with legal action. Susan shows me the letter she received on Monday – asking her with almost quaint politeness to “please pay £115.58 within seven days” or “legal action will be taken after a further seven days for the full amount of £1,150.38.”
It is unclear where someone dealing with mental illness with set, low income is expected to get over a thousand pounds from in less than two weeks.
5. Independent Living Fund (ILF)
Crucially, the coalition’s cuts have been a two-tier threat to disabled people keeping their home: not only through the ability to pay the rent but to live independently at all.
For its users, the Independent Living Fund (ILF) – the standalone fund that helps 18,000 of some of the most severely disabled people to live in their own homes – is the difference between living independently as an adult or a toss up between clock-timed care slots and going into residential care.
The government’s much-fought decision to, from June 2015, close the ILF has come to symbolise perhaps the most devastating message of austerity: disabled people’s dignity is now too costly.
Helen Johnson, 43, has cerebral palsy – meaning she uses a wheelchair and has minimal movement – and has used ILF since she was 18. Talking from her bungalow just outside Doncaster, she tells me that, added to her own financial contributions, the ILF has allowed her to stay in the home she grew up in. Three rotating personal assistants help her with basic care needs: going to the toilet when she wants, washing, and putting medicated cream on her fragile skin. But, like every ILF user I’ve spoken to, what’s striking is how the fund also means Helen’s been able to have what most of us would say constitutes living rather than existing: to study, work part-time when her health allowed, enjoy music festivals and go to comedy shows with friends.
Listen to a politician talk about the decision to close the ILF and they will tell you that any disabled person currently being supported by the fund will simply be transferred to local authority care provision. What they don’t tend to say is that the money won’t be ring-fenced, meaning local councils – already shredding social care (see number six) – will have no obligation to spend it on current recipients.
It gives some insight into what is to come for Helen that she tells me that, before the decision to close the ILF was announced, she asked her local authority to “top up” her care hours (her elderly mum helps her with her nighttime care) – and was told to go back to apply to the ILF as the process “would be easier and a lot less complicated”.
Perhaps the darkest part is that none of this could be called news to the government. The DWP’s own research says it’s “almost certain that closure of the ILF will mean that the majority of users will face changes to the way their support is delivered, including the real possibility of a reduction to the funding they currently receive”. This could mean “the loss of a carer or personal assistant”.
According to a series of freedom of information requests by Disabled People Against Cuts, over half the local authorities that responded to the government’s ILF consultation said the move would either result in significantly reduced care packages that would affect people’s ability to enjoy any quality of life, or in more admissions to residential care homes.
It might be worth taking a moment to imagine the reality of that.
Helen is a “group 1 ILF recipient” which means, as an original user of the fund, she has never had any involvement with social services before. She tells me that her local authority – nor anyone else – even contacted her when they started talking about closing the ILF and that communication throughout has “so far been non existent.”
“I contacted social services myself in early January, because they hadn’t been in touch,” she says. “A social worker visited me but admitted that although they knew changes would happen, she did a basic assessment but then said she was due to go on a training course as the paper work was due to change… I’ve not heard anything else as yet.”
The feeling of a lack of control over her own life is evident.
“I do feel very ignored and totally in the dark regarding the future,” she adds.
6. Social care
It may give a hint to the government’s approach to protecting disabled citizens that the ministers pointing to social care as the solution to ILF closure are the same ones who have cut the system to the bone.
Social care has had over £3.5bn taken from its funding by the coalition over the past four years, according to Adass, directors of adult social services. The result has been councils forced to reduce the number of disabled people dubbed as eligible for it – essentially abandoning adults with severe disabilities to live without even basic help. It has made few headlines but two out of five disabled people in this country are now unable to eat, wash, dress or get out of the house due to underfunded services in their area.
Kenneth Fletcher, 23, has cerebral palsy and is partially sighted. In 2011, he moved out of his family home and into a shared bungalow with three other disabled people and what was said to be 24-hour on-site support. At the age of 19, what he says he was looking forward to are the basics of independence any of us want as we form a life: socialising with friends, maybe going on holiday with his new housemates. He says that after a few weeks in his new home, he realized “something didn’t feel right”.
“Everyone was in bed by 8.30pm. Why would you go to bed so early every night?” Kenneth explains. “It turned out my new housemates had no choice – they were being ‘put’ to bed early, even if they didn’t want to go.”
Kenneth says he remembers coming home to find one of his housemates, who he describes as a girl who uses a wheelchair, sitting at the kitchen table with nothing to do.
“She’d just been left there on her own,” he says. “Another time I came home to find two of my housemates with their wheelchairs facing the wall. I don’t know how long they had been like that – hours maybe.”
Despite intervention by Kenneth’s mum and social worker, he tells me nothing changed. After a year, he was able to move into another supported-living bungalow that he describes as “not perfect” but better.
It says something about the standard of independent living for disabled adults in this country that, when discussing his expectations with disability charity Scope, Kenneth says he hopes for the ability to “choose what time to get up in the morning” and “what to have for lunch.”
Treating disabled people like cattle is the cheaper option. By the end of the decade, the Local Government Association and Adass estimate there will be a £4.3bn funding “black hole” in adult social care. Scope’s report, “The Other Care Crisis”, puts it clearly: “Austerity has pushed the system to crisis point…turning back the clock on disabled people’s independence.”
7. Access to Work
For a government obsessed with “hardworking families” and “making work pay”, changes like PIP or social care have not only been immoral but counterproductive. Cutting the support disabled people need to get dressed and leave the house tends to make it difficult for them to be able to turn up to work.
Cuts to Access to Work – the fund delivered through Jobcentre Plus that pays for practical support for disabled people at work – is the most blatant example of this. Or it would be, if the government were not trying very hard to bury them. (The Department for Work and Pensions only agreed to publish the guidance that shows who is even eligible for support after campaigners threatened legal action.) Go a bit deeper and we know that limits have been placed on the amount of help available – resulting in a “climate of suspicion” around claims, payment delays, cuts in support hours, and risk of disabled people losing their jobs.
Bernie Vincent, who uses a wheelchair and has cognitive impairments, works as a training manager at an independent living centre. Her disability means she needs help to process and interpret information and for the last twenty years she’s relied on the Access to Work scheme to help fund a support worker. From May 2014, she had her funding cut by 60 per cent. There had been no change in her disability and she had been given no new assessment – only filling in what she describes as a review form.
“I’ve always had support from Access to Work. Without funding, [working for the past twenty years] wouldn’t have been possible,” she tells me. “Now it’s all under threat.”
The first thing Bernie heard about her funding being cut was when her office manager told her they hadn’t been paid. She tells me she then had to start “chasing things up”.
“[When I called them,] the person on the other end of the phone was robotic, as if she was reading from a script,” she says. “I couldn’t take in what I was being told. I kept asking for an explanation only to be informed that Access to Work only fund 20 per cent of support needs.”
“There I was telling this stranger I’d never spoken to before that I’d likely lose my job, that I wouldn’t be able to pay by mortgage. Nothing made a difference.”
Bernie tells me she made “numerous” phone calls, sent emails, and made an official complaint but the DWP went ahead with her funding cut. This is not surprising. The DWP has been warned by the work and pensions select committee that the process by which people could challenge decisions made about their support funding needed to be “clearer and more transparent”.
The cuts in her funding mean Bernie now has to spend two days at work without her support worker. On the days she still has support, she leaves early in order to “make best use” of the funding and ends up making up her contracted hours at home without help.
Left without her support worker, Bernie tells me she becomes “anxious”, her “mind swims with information”, and everything she does “takes longer”.
“I worry can I make my targets, how this will impact on the others in my [office] team,” she says. “If I don’t have adequate support at work, I can’t continue to do my job.”
“Society sees disabled people like me going about our lives and think we just jump out of bed, get on with our lives, perhaps in the same way as they do,” she adds. “What people don’t see is the stuff that goes on behind closed doors to make this happen…how critical it is we have the funding and services to just get on with an average day.”
8. Benefit sanctions
This myth that it is shrinking government – loss of support or added conditionality – that helps workers has propped up much of the coalition’s employment thinking. It gave birth to one of the worst developments of the past five years: the benefit sanction system.
There are no legitimate grounds to remove the money people need in order to eat, whether that person begins as the picture of health or is sitting in a wheelchair. But it gives some insight into the mentality of the system that as of last year, the number of benefit sanctions against disabled and chronically ill people had risen by 580 per cent. Like the 23-year-old pregnant woman who the recent MP-led inquiry heard was receiving employment and support allowance for mental health problems following the stillborn birth of her first baby eight months earlier. She had missed one work-focused interview because on that day she had found it too difficult to leave her flat – so they stopped her money, and left her to walk two miles to a food bank after going without a hot meal for a fortnight. Or the young man with learning difficulties who had his benefits stopped for being four minutes late for the JobCentre – despite the fact he couldn’t tell the time. He was later found sitting in his flat in the dark with no electric, gas, or food.
Listen to Esther McVey or IDS and they will tell you these cases are ‘vulnerable’ claimants who have “fallen through the cracks,” as if what has happened to these people happened by magic. It didn’t. The Coalition brought in measures to increase the amount of money they were able to take from sanctioned disabled and chronically ill people. The application for hardship payments – the emergency fund meant to, essentially, keep people alive during their sanction period – have been designed in a way that is too difficult for vulnerable people to understand. A fact that the MP’s inquiry into the sanction system said means: “the people potentially most in need of the hardship system were the least likely to be able to access it”. Cameron chose to ignore this point when Andrew Marr questioned him this month on the death of David Clapson – the diabetic who died because a sanction meant he couldn’t afford to keep his insulin in a fridge. Or that JSA claimants aren’t even allowed to use the hardship fund for 15 days after being sanctioned. It is worth noting that this group will include disabled and ill people, falsely judged as “fit to work” (see number one) and put on JSA.
This is a system that is morally rotten. Jobcentre managers routinely put pressure on staff to sanction claimants’ benefits – and even have league tables for job centres to compete against each other. Clapson is not the only one to die as a result. The DWP have been forced to admit they’ve investigated 49 deaths since 2012 “associated with a DWP activity”.
It is telling that the sanction inquiry found there is limited evidence that benefit sanctions actually help people find work. It is a message that could sum up the coalition’s entire catalogue of disability policies: pointlessly cruel.
*Some names have been changed