The Secret Cuts: Part Two, The Independent Living Fund

The Independent Living Fund is vital to anyone who has a severe impairment and still hopes to live their life. Alan White and Kate Belgrave explore the decision to close it and devolve its work to cashstrapped councils.

Next week, the Independent Living Fund (ILF) is 25 years old – or it would be, if Esther McVey hadn't decided to close it. The idea that people with severe disabilities can live as independent adults, go to work or university and even leave the house when they feel like it has been hit by this closure.

The ILF is a standalone fund that pays for extra carer help for people with severe disabilities: always-present, round-the-clock carers (called personal assistants) in the cases of recipients Penny Pepper and Sophie Partridge who appear in the videos that accompany this article. Neither Penny nor Sophie can transfer unaided and both hire PAs to provide the physical help they need to live their busy daily lives. In the video below, writer and performer Sophie explains exactly how they help her. 

Sophie's local council, Islington, funds half of her care costs and the ILF pays for the other half. Without the fund, she faces the prospect of being stuck alone in her flat, unable to move or clean herself, or even to leave if there's ever a fire or an emergency. She worries in particular that she'll be left alone at night, because “councils are reluctant to fund people's night-time care packages” and that people are being told that they should use incontinence pads at night, even if they're not incontinent. That's the best-case scenario. The worst-case scenario is that she will be packed off to an under-funded, under-resourced care home where she'll go nowhere and do nothing except “sit around all day waiting to go to the loo and all the rest of it.”

“The direct fear we have is that they will impose going in an institution on us – which [could also mean] imposing moving out of the borough,” says Islington writer and journalist Penny Pepper, who also says she will take Islington council to court - “no question” - if the council tries to force her into a care home.

That's why the ILF is so vital. It's vital to anyone who has a severe impairment and still hopes to live their life. Through illness or injury, that could be any of us at any time. The Independent Living Fund and the ethos behind it matter to us all except the Government, it seems. At the end of last year, the DWP made the decision to close the fund and devolve it to cashstrapped councils – councils that can't meet demands for care services as it is, let alone pay for people with complex needs like Sophie and Penny.

The DWP has absolutely insisted that this isn't a cut. Earlier this year, one press officer insisted (at such length and with such intensity that Kate had to move her over-heating mobile away from her ear) – that “the ILF will be incorporated into local social care arrangements... to ensure fair, targeted support.”

But as Kate wrote earlier this year: “Anyone who says councils will be able to finance these complex care packages in this appalling funding environment, with these monumental care funding gaps,  is either dreaming, or lying.” It seems safe to assume this government is lying and that people will die because of it. Provision is already at tremendously low levels – as anyone who read our story last week on Barnet council's disastrous attempts to outsource and profit from care for people with learning difficulties will know (watch how the board of the private company in charge of care there walked out of a meeting with concerned parents. Board members said they didn't have to hear parents out as the company was a private one).

In her video, Sophie talks about campaigners' recent lost court battle to fight the closure of the ILF. It's not hard to see why they took this action. Councils are tightening care eligibility criteria so that they only fund people whose have “substantial” or “critical” needs.  False Economy FOI numbers last year showed that more than 7,000 disabled and elderly people had lost some or all of their state-funded support after councils changed eligibility rules.

Being placed in the “substantial” or “critical” bands does not guarantee that needs will be met, either: this Lancashire woman, who has cerebral palsy and is in the “substantial” needs band, has to stay in bed on weekend, because her care hours don't stretch to weekends.  

Councils have been taken to court for trying to restrict care, or for increasing charges. John Pring's excellent Disability News Service reported recently that Worcestershire county council faces a judicial review for capping care costs in a scheme where some service users “whose care costs exceed a certain limit will be told to either meet the shortfall themselves, find a cheaper means of support – perhaps by using direct payments – or 'receive their care in a residential or nursing home'”.  The We Are Spartacus campaign wrote a thorough report on the Worcestershire cap last year. 

So you can see why ILF recipients wanted to challenge the "consultation" exercise that led to the closure decision – and to keep alive the idea that independent living support should be available to anyone who needs it. Bafflingly, they lost their case  - as this statement says, “the court found that the consultation process concerning the closure was lawful and that the DWP had met the public sector equality duty when deciding to go ahead.”

This decision, which will be challenged, seemed extraordinary, especially when you know that councils didn't know how much money they'll get to cover this new group of service users, or how long they'll receive that money, if they receive any at all. Islington council, which part-funds care for Sophie Partridge and Penny Pepper, told Kate earlier this year that it did not know how much devolved funding it would receive.

The DWP has been extremely unclear about the way the devolution of funds will work, or for how long. At the recent court case, lawyers for ILF recipients discovered that there was no clarity on plans to continue devolution of the fund after 2015.

Louise Whitfield from Deighton Pierce Glynn tells us that the concern is that after 2015, there will be no extra funding at council level for people who are ILF recipients and who have high-level needs. Care for those people would be funded out of councils' general adult social care budgets – budgets which, as we've discussed, are already fatally strained. She says: “In a submission to a minister, the DWP’s position was stated as: 'There are presentational risks for DWP to a delayed transfer. The transfer of funding outside of the overall social care settlement would be more transparent and may lead this department open to criticism that we have not transferred enough to meet user needs if we are unable to secure the full amount administered by the ILF at the point of closure.' So not only does no-one know how much money will be devolved, the DWP didn’t want it to be transparent in case they didn’t give local authorities enough, because then they might get criticised.”

The DWP sent us an odd statement in which it seemed to suggest that the idea was to lobby spending reviews for ILF funding after 2015: “The distribution of ILF funding for 2016/17 and future years will be agreed at the subsequent spending reviews.” The DWP also said that it was "not possible at this time to determine precisely what sums will be devolved to each Local Authority or Devolved Administration from April 2015." 

No wonder people are worried. Why would anyone have confidence that any funding will be made available at all? “This is about reform,” the department said and continues to say. “There is no intention to remove funding for the ILF from the social care system.” Our two cents – if you believe that, you'll believe anything. If we've seen nothing else in the past few years, we've seen monumental cuts to social care. Look at this recent list of cuts that councils are making to adult social care. By the time the ILF is “devolved” to councils, the DWP will be perfectly placed to say that any shortfall in care is the responsibility/fault of local authorities.

And that has people frightened – for themselves and for the rest of us. This is an interview with Penny Pepper:

Kate has been speaking to Penny for much of this year, but this is the first time she's made this sort of statement: “I'm actually working on a piece about Godwin's Law, because I think this is quite scary. I really do. It does have parallels. Like the Colin Brewer [issue] – unbelievable.”  It's one of the reasons that Penny speaks fervently against assisted suicide (she writes in more detail about this below). “I'm not against suicide – I think that suicide is everyone's right. I'm completely against any change to allow doctors to assist with suicide. It it's too dangerous and that is what the doctors in you saw in Nazi Germany did.”

Sophie Partridge has been wondering out loud on these issues as well. She didn't several months ago, as you can see here, when she said “you don't really want to go there” - but things have changed in that time. “You've had the [Cornish councillor] making his comments about disabled children costing too much and equating us with two-headed sheep and how we should just be knocked on the head.”

Disabled People Against Cuts (DPAC) plans to hold a 25th birthday party for the ILF next week. It will be a celebration of independent living, but also a lament, if you will – for the fund and for the idea that we've abandoned the idea that anyone who is born with or acquires a disability should be supplied with the carers and the equipment they need to live, just like everyone else.

In response to our report, a DPAC spokesperson said: "This Government said they would support those disabled people most in need: they have proved time and time again that they will not. The ILF issue is one of the most serious breaches of the UNCRPD to date. It is fundamentally wrong".  Tracey Lazard, CEO of Inclusion London said, “The closure of the Independent Living Fund effectively represents the end of disabled people’s right to independent living, something disabled people fought hard for many years to win. We are seeing the consequences of the closure to new applicants in 2010 with disabled people trapped in their own home, lacking any kind of quality of life and too frightened to complain in case they lose the very little support they get now.

Sophie Partridge and the London Paralympians will be performing at the Greenwich and Dockland International Festival. The Avaaz petition to save the Independent Living Fund is accessible here.


Penny Pepper on assisted suicide

People might say that I see an unsavoury connection between the closure of the Independent Living Fund and the overwhelming support for assisted suicide.

I would argue it is much more than this because the ILF exits to support ‘severely’ disabled people to live in the community independently and it is ‘severely’ disabled people who find themselves living in a culture which has a view that vague, non-specific notions of ‘suffering’ and high levels of impairment are best resolved by suicide, with a glib assumption that this is wholly compassionate and ethically just.

For all that we have Dignity in Dying,  we have the lesser known Not Dead Yet, with many lead members, such as ‘severely suffering’ individuals - Independent member in the Lords, Dame Jane Campbell, and my friend, conceptual artistKatherine Araniello.

It’s a messy business. I don’t personally know any disabled person who is against suicide per se. It’s more about the very slippery slope of giving doctors the means to help us off our mortal coil. I have been on that slope, and I have been afraid.

I would suggest that the closure of the Independent Living Fund, set against the increasing publicity around assisted suicide law, makes this a matter of economic cleansing: we are slowly coaxed to believe we are too expensive to keep alive and it’s kinder if we are convinced to die.

But, in terms of the ILF and assisted suicide, you won’t catch me going gently into the final goodnight – or into a care institution.

Photograph: Getty Images
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John McDonnell interview: "We’re going to destroy Osborne’s credibility"

The shadow chancellor on the Spending Review, Jeremy Corbyn's leadership and why trade unions will have to break the law. 

When I interviewed John McDonnell in March, before the general election, he predicted that Labour would be the largest party and confessed to a “sneaking feeling that we could win a small majority – because I think the Tory vote is really soft”. As the long-standing chair of the Socialist Campaign Group, McDonnell anticipated leading the resistance inside Labour to any spending cuts made by Ed Miliband. Eight months later, he is indeed campaigning against austerity – but as shadow chancellor against a Conservative majority government.

I meet McDonnell in his new Westminster office in Norman Shaw South, a short walk down the corridor from that of his close friend and greatest ally, Jeremy Corbyn. The day before George Osborne delivers his Spending Review and Autumn Statement, his desk is cluttered with economic papers in preparation for his response.

“The message we’re trying to get across is that this concept of the Tories’ having a ‘long-term economic plan’ is an absolute myth and they’re in chaos, really in chaos on many fronts,” he tells me. McDonnell points to the revolt against cuts to tax credits and policing, and the social care crisis, as evidence that Osborne’s programme is unravelling. On health, he says: “He’s trying to dig out money as best as he can for the NHS, he’s announced the frontloading of some of it, but that simply covers the deficits that there are. Behind that, he’s looking for £22bn of savings, so this winter the NHS is going to be in crisis again.”

Asked what Labour’s equivalent is to the Tories’ undeniably effective “long-term economic plan” message, he said: “I don’t think we’re going to get into one-liners in that way. We’ll be more sophisticated in the way that we communicate. We’re going to have an intelligent and a mature economic debate. If I hear again that they’re going to ‘fix the roof while the sun shines’ I will throw up. It’s nauseating, isn’t it? It reduces debate, intellectual debate, economic debate, to the lowest level of a slogan. That’s why we’re in the mess we are.”

Having abandoned his original support for the Chancellor’s fiscal charter, which mandated a budget surplus by 2020, McDonnell makes an unashamed case for borrowing to invest. “The biggest failure of the last five years under Osborne is the failure to invest,” he says. “Borrowing at the moment is at its cheapest level, but in addition to that I’m not even sure we’ll need to borrow great amounts, because we can get more efficient spending in terms of government spending. If we can address the tax cuts that have gone ahead, particularly around corporation tax, that will give us the resources to actually start paying again in terms of investment.”

He promises a “line-by-line budget review” when I ask whether there are any areas in which he believes spending should be reduced. “My background is hard-nosed bureaucrat . . . we’ll be looking at where we can shift expenditure into more productive areas.”

From 1982 until 1985, John McDonnell, who is 64, was chair of finance at the Greater London Council under Ken Livingstone. After vowing to defy the Thatcher government’s rate-capping policy he was sacked by Livingstone, who accused him of manipulating figures for political purposes. “We’re going to look like the biggest fucking liars since Goebbels,” the future mayor of London told him. McDonnell, who later described Livingstone’s account as “complete fiction”, has since resolved his differences with the man now co-chairing Labour’s defence review.

After his election as the MP for Hayes and Harlington in 1997, McDonnell achieved renown as one of New Labour’s most vociferous opponents, rebelling with a frequency rivalled only by Corbyn. His appointment as shadow chancellor was the most divisive of the Labour leader’s reshuffle. “People like Jeremy even if they don’t agree with him. People don’t like John,” one MP told me at the time. Mindful of this, McDonnell has sought to transform his image. He has apologised for his past praise of the IRA and for joking about assassinating Margaret Thatcher, rebranding himself as a “boring bank manager”. But there are moments when his more radical side surfaces.

He told me that he supports workers breaking the law if the trade union bill, which would limit the right to strike, is passed. “It’s inevitable, I think it’s inevitable. If the bill is introduced in its existing form and is used against any particular trade unionist or trade union, I think it’s inevitable that people will resist. We established our rights by campaigning against unjust laws and taking the risk if necessary. I think that’s inevitable and I’ll support them.”

“Chaos” might be how McDonnell describes Osborne’s position but the same term is now daily applied to Labour. The party is riven over air strikes in Syria and the renewal of Trident and MPs are ever more scornful of Corbyn’s leadership.

While Corbyn has so far refused to offer Labour MPs a free vote on Syria, McDonnell says that he favours one and would oppose military action. “My position on wars has always been that it’s a moral issue and therefore I veer towards free votes . . . We’re waiting for Cameron’s statement; we’ll analyse that, there’ll be a discussion in shadow cabinet and in the PLP [Parliamentary Labour Party] and then we’ll make a decision. I’m still in a situation where I’ve expressed the view that I’m opposed to the bombing campaign or engagement. I think the history of the UK involvement in the Middle East has been a disaster, to say the least . . .This isn’t like the Second World War where you have a military campaign – you defeat the enemy, you sign a peace agreement and that’s it – this is asymmetric warfare. In addition to the risks that are in the battlefield there’s a risk in every community in our land as a result of it.”

Would he want any of the 14 former shadow cabinet members who refused to serve under Corbyn to return? “All of them, we’re trying to get them all back. We’ve got Yvette [Cooper] helping us on a review we’re doing about the economy and women . . . It’s an open door policy, I’m trying to meet them all over these next few weeks.”

Livingstone, a member of Labour’s National Executive Committee, recently called for Simon Danczuk, who revealed details of a private meeting with Corbyn in the Mail on Sunday, and Frank Field, who told me that MPs should run as independents if deselected, to be disciplined. But McDonnell takes a more conciliatory line. “With Simon [Danczuk] in particular and the others, it’s just a matter of saying look at the long-term interests of the party. People don’t vote for a divided party. They’ll accept, though, that within a party you can have democratic debate. As I said time and time again, don’t mistake democracy for division. It’s the way in which you express those different views that are important. All I’m saying is let people express their views, let’s have democratic engagement but please don’t personalise this. I think there’s a reaction within the community, not just the party, against personalised politics. It’s not Jeremy’s style, he never responds in that way. It’s unfortunate but we’ll get through it. It’s just minor elements of it, that’s all.”

McDonnell disavows moves by some in Momentum, the Corbyn-aligned group, to deselect critical MPs. “What we’re not into is deselecting people, what we want to try and do is make sure that everyone’s involved in a democratic engagement process, simple as that.

“So I’ve said time and time again, this isn’t about deselection or whatever. But at the same what we’re trying to say to everybody is even if you disagree, treat each other with respect. At the height of the debates around tuition fees and the Iraq war, even though we had heated disagreements we always treated each other with mutual respect and I think we’ve got to adhere to that. Anyone who’s not doing that just lets themselves down, that’s not the culture of the Labour Party.”

In private, the 90 per cent of MPs who did not support Corbyn’s leadership bid speak often of how and when he could be removed. One point of debate is whether, under the current rules, the Labour leader would automatically make the ballot if challenged or be forced to re-seek nominations. McDonnell is emphatic that the former is the case: “Oh yeah, that’s the rule, yeah.”

McDonnell’s recent media performances have been praised by MPs, and he is spoken of by some on the left as a possible replacement if Corbyn is removed or stands down before 2020. His speech to the PLP on 23 November was described to me by one shadow minister as a “leadership bid”. But McDonnell rules out standing in any future contest. “No, no, I’ve tried twice [in 2007 and 2010], I’m not going to try again, there’s no way I would.”

Despite opinion polls showing Labour as much as 15 points behind the Conservatives, McDonnell insists that the party can win in 2020. “Oh definitely, yeah, you’ll see that. I think this next year’s going to be pivotal for us. We’re going to destroy Osborne’s credibility over the next six months. But more importantly than that, we can’t just be a negative party . . . we’re going to present a positive view of what Labour’s future will be and the future of the economy.

“Over the next 18 months, we’ll be in a situation where we’ve destroyed the Tories’ economic reputation and we’ve built up our own but we’ll do it in a visionary way that presents people with a real alternative.”  

George Eaton is political editor of the New Statesman.