John Kelly performing in Graeae’s production of Reasons To Be Cheerful. (Photo: Alison Baskerville)
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Back to basics: the government’s grim decision to kill off the Independent Living Fund for disabled people

Two years ago John Kelly, an artist and long-term wheelchair user, was singing at the Paralympics Opening Ceremony. Without the ILF this would never have been possible.

“My feelings are all over the place. Worry at not knowing what I’m likely to lose, not knowing or being able to try out what might go in its place to see if it works… not being involved in change that is about how I live my life. I worry about others, my loved ones, friends hoping I can maintain relationships and not have to rely more on them for help.”

It’s been a week since John Kelly heard that the government is going ahead with its closure of the Independent Living Fund – the standalone fund that helps him and 18,000 other people with severe disabilities to live in their own homes.

The Court of Appeal had quashed the government’s first attempt to do so, when five ILF users secured a widely celebrated victory in November. But despite the court ruling that the DWP had breached the Equality Act’s public-sector equality duty – finding that briefings given to the then disability minister Esther McVey by officials didn’t adequately make clear “the potentially very grave impact” the closure of the ILF could have on those using it – in fact, the judgment only meant the government had to reconsider its decision (this time paying “proper attention” to its legal obligations). Mike Penning, the current minister for disabled people, announced last week that this has now been done – and has simply moved the closure date for ILF back by three months to allow for time lost following the Court of Appeal judgment.

John, 44, has been relying on the support of ILF for over 20 years. He has a long-term joint impairment that means he uses a wheelchair. Like other ILF users, John needs help with aspects of day-to-day living: getting out of bed in the morning, going to the bathroom, getting something to eat.’

John Kelly performing at the Liberty Festival, Queen Elizabeth Olympic Park, 2013. (Photo: Sarah Murrison)

Before ILF, John tells me he relied on his mum for care and when she became ill with cancer, a care agency.

“It was very basic and a bit impersonal, run by the clock fitting all my needs into an hour here, an hour there,” he says. “The workers were lovely but often I wouldn’t know who was coming in [to my home] and obviously they didn't know much about me, where things were in my house, or how I did things.”

John describes ILF as “completing changing” his life. On top of the basic care costs his local council provides, ILF gives him 65 hours a week: allowing him to hire three to four personal assistants.

“I have choice and control over the basic but fundamental things”, he says. “I no longer have to fit my life into boxes and hourly care slots, I don’t have to worry as much about how long it takes me to shower or get dressed or go to the toilet.”

ILF means the basics of health and dignity: getting to the bathroom when you need it, having a hot meal, and living as an adult in your own home. It also means having the parts of life that can actually be defined as living: nipping to the shops, seeing friends, going to work.

John is an artist and has built a successful career working as a facilitator and musician. To the applause of David Cameron, two years ago he was singing Ian Dury’s 1981 song “Spasticus Austisticus” at the Paralympic Opening Ceremony as fellow performers waved placards for “Equality” and “Rights”. 

“I don't know what the future holds,” John tells me. “Not in the insecurities we all share, but… the basics. How many hours support I’ll have, will I have to decide between a shower and a meal because the care clock is ticking once again?”

“All because someone who doesn’t even know me has decided they know a better way for me to live independently,” he adds. “They consulted but the problem is they haven’t listened.”

 

John Kelly and the Graeae Theatre Company perform at Ronnie Scott's in London, 2011. (Photo: David Sinclair)

As John Pring noted on Disability News Service, when the Government consulted ILF users on its original decision to close the fund, the responses painted a chilling picture. “ILF allows me to do, as closely as possible, what normal human beings do. I do not do ‘activities’ or ‘access the community’ – I go out for a drive, for a picnic, to visit people, the kind of things ‘real’ people do,” described one respondent. “Before I was introduced to the ILF I was looked after by the local authority. I had no life at all, just a horrible existence. I didn’t get out of bed for months at a time. I was not encouraged to take part in life with the children. My care was extremely basic – to be kept clean, fed and medicated,” said another.

The closure of ILF means that people currently supported by it will, from 2015, be transferred to this local authority care provision. The money, crucially, won’t be ring-fenced – meaning local councils will have no obligation to spend it on current recipients. 

These are the same local councils that just last week have been found to be enduring such deep cuts that the UK is breaching the European charter of local self-government. Local authorities do “not have adequate financial resources” and this is likely to “get worse in years to come”, the Council of Europe said

“Local authority support for social care’s in crisis and things are going to get worse as central funding for local authorities is slashed,” Ellen Clifford, from Disabled People Against Cuts, the campaign who supported the legal challenge against ILF’s closure, tells me. “Social-care packages are ever diminishing, and increasingly stretched local authorities can’t fulfil the same outcomes as the ILF… We’ve seen [this already] with the impact on disabled people who missed out on ILF support following its closure to new applicants in December 2010.”

“Just today I attended a case conference with a disabled woman who has serious physical and mental health impairments and due to the fact that her needs are not being met [by her local authority] her children are being put on the ‘at risk’ register… Still with no forthcoming appropriate increase in support,” she says. “Disabled people's fundamental human rights are being infringed left right and centre by the increasing failings in local authority support.”

It was a year ago that Alan White and Kate Belgrave reported for the New Statesman that local authorities were already tightening care eligibility criteria so that they only fund people who have “substantial” or “critical” needs. The council facing a judicial review for capping care costs in a scheme where some disabled people were being told to find cheaper means of support such as receiving “their care in a residential or nursing home”. The woman who has cerebral palsy and is in the “substantial” needs band and has to stay in bed at the weekend, because her care hours don’t stretch to weekends. Research by the Financial Times this month declared there’s now a £20bn black hole in the public finances  – suggesting that even greater cuts will have to be made to social security and cash-strapped local government because other key areas of spending (such as the NHS and schools) are protected. Things are getting worse, not better.

As Kate put it: “Anyone who says councils will be able to finance these complex care packages [of ILF users] in this appalling funding environment, with these monumental care funding gaps, is either dreaming, or lying.”

Perhaps the worst thing is that this isn’t news to the Government. It knows exactly what closing the ILF will mean for the people relying on it. Just last week, its own analysis admitted that 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”. [My italics] This could mean “the loss of a carer or personal assistant”, it adds.

I speak to John from the road, travelling from his flat in South London to the first date of his tour. He’s performing in The Threepenny Opera this month; enabled, as always, by the system of support he has built with ILF over years. “Imagine a world where evil goes unpunished and lowly souls remain on the poverty line,” the promotional blurb of the show reads. John suggests it seems fitting for the times we’re in.

“I’m worried about losing what I’ve worked so hard to achieve in order to manage my own life,” he tells me. “I’m fearful of enforced, rushed, ill-considered changes for political point scoring, fearful of the experiments with my life…”

“I’m angry [too],” he says. “We shouldn’t have to be fighting for such basic things in 2014, in the UK, in a civilised, democratic, ‘world leading’ country…. [But I will do. I’ll] fight for the same choice and control to be able to participate, contribute and live a full meaningful life.” 

John Kelly performing. (Photo: Patrick Baldwin)

The fight continues,” Ellen says. “We’re seeing… how local authority support is failing to meet the needs and rights of disabled people under the UN Convention on the Rights of Persons with Disabilities. The strength and resolve of grassroots disabled people got us this far and we’re not giving up now. This has never just been about protecting support for existing ILF recipients, however important that certainly is, but it’s also about the fundamental right to independent living for all disabled people.”

“I’m not fighting for more or extra, just for the same,” John tells me. “The only time usually a government or society takes these kinds of freedoms away are when we’ve broken the law and go to prison,” he adds. “And it isn’t me that’s robbed the bank.” 

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.

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Labour's unstoppable force meets its immovable object

Team Corbyn are confident. But so are their opponents.

If you come at the king, you best not miss. And boy, have they come at him: over 40 resignations from the opposition frontbench and a motion of no confidence in Jeremy Corbyn’s leadership that both loyalists and rebels expect to pass easily.

What happens next? The ruling executive of Momentum, the organising force behind Jeremy Corbyn’s supporters in the party grassroots, met Corbyn in his office late last night. It would be overstating it to say that the mood was jubilant but Corbyn and his allies are confident of victory in the struggle for supremacy. “Game on,” texted one senior figure. “He won’t stand down,” another told me, “He feels he owes it to the membership to let them decide.”

Within Team Corbyn, they remain convinced that the shadow cabinet “are going to war without an army”, in the words of one insider. Others are already looking forward to the policy conference of Labour and Britain’s largest trade union, Unite, where there is a chance the union may adopt a policy of supporting mandatory reselection of Labour MPs.

Are they right? Having called and spoken to party members, it is certainly clear that Corbyn’s standing among the membership is not quite as high as it once was.

But members are unclear what they want next – several mentioned Keir Starmer, although my instinct that is largely because, as one member conceded, he is still very much a “blank slate” on which the hopes of the party’s electorate can be projected. What most want is someone who would retain much of the politics but with greater competence – the Vice News documentary seems to have done more damage than the referendum on the whole – and without the thirty years in politics for the right-wing press to pick over. The difficulty is that it is hard to see a politician in the parliamentary Labour party answering to that description or even close to it. While for the rebels, finding a winner is no longer the priority, surviving a snap election in October is, loyalists in the PLP and the grassroots are either unconvinced that the result will be heavy defeat, or unconvinced that any of the replacements would do better.

The difficulty for Corbyn’s critics is, rather like Labour under Ed Miliband, although they might be the repository for people’s irritation and uncertainty, there are few making a positive choice to vote for any of the available candidates. My instinct is, if Corbyn is on the ballot, the polls might show a tighter picture, he might have a tougher time on the campaign trail that he did last time, and he might have a closer fight as far as constituency nominations were concerned, but he would ultimately win, and win easily.

That’s before you get into Momentum’s ability to expand the electorate further.  Although appearing at last night’s rally was criticised by some journalists and cost Corbyn’s team at least one frontbencher, who, while keen to avoid prolonging the fighting, didn’t want to endorse the attacks on his colleagues in the parliamentary party, ultimately the petitions in support of Corbyn and the impromptu rally have given them more data to go out and recruit people to vote in the next leadership election, more than making up for any loss of support within the party-as-it-is.

But – and it’s a big “but” – I’m not convinced that Corbyn will make it to the ballot.

The party’s legal advice, from the party’s lawyers, GRM Law, is that Corbyn will have to secure 50 nominations to make the ballot, just as any challenger will. My feeling, with MPs of all parties convinced that there will be an election in October as soon as the new Conservative leader is in place, is that pressure from activists to nominate Corbyn will be less fruitful than it was in 2015. (That said, Labour MPs are skittish.) 

The Labour leadership themselves have obtained legal advice showing the reverse from Doughty Chambers. But whichever way the NEC rules, neither side will be able to take it to the courts. Most legal professionals estimate that Labour, like a trade union or a private members’ club, is exempt. “You accept the rules of the club when you join the club,” and that’s the end of it. My impression is that the judiciary would be reluctant to get involved.

The difficulty with predicting what happens next is it brings two of Labour’s iron laws into direct conflict: Labour never gets rid of its leader, and Tom Watson always wins. And I don’t think anyone is sure which of those laws is going to end up broken.

Stephen Bush is special correspondent at the New Statesman. He usually writes about politics.