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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Clive Lewis interview: I don't want to be seen as a future Labour leader

The shadow business secretary on his career prospects, working with the SNP and Ukip, and why he didn't punch a wall. 

“Lewis for leader!” Labour MP Gareth Thomas mischievously interjects minutes after my interview with Clive Lewis begins. The shadow business secretary has only been in parliament for 18 months but is already the bookmakers’ favourite to succeed Jeremy Corbyn. His self-assuredness, media performances and left-wing stances (he backed Corbyn in 2015 and again this year) have led many to identify him as Labour’s coming man.

On 19 September, I met Lewis - crop-haired, slim and wearing his trademark tweed jacket - in Westminster's Portcullis House. He conceded that he was flattered by the attention (“It’s lovely to hear”) but was wary of the mantle bestowed on him. “This place has lots of ex-would-be leaders, it’s littered with them. I don’t want to be one of those ex-would-be leaders,” the Norwich South MP told me. “I don’t want a big fat target on my head. I don’t want to cause the resentment of my colleagues by being some upstart that’s been here 18 months and then thinks they can be leader ... I’ve never asked for that. All I want to do is do my job and do it to the best of my ability.”

But he did not rule out standing in the future: “I think that anyone who comes into this place wants to do what’s best for the party and what’s best for the country - in any way that they can.”

Lewis, who is 45, was appointed to his current position in Labour’s recent reshuffle having previously held the defence brief. His time in that role was marked by a feud over Trident. Minutes before he delivered his party conference speech, the former soldier was informed that a line committing Labour to the project’s renewal had been removed by Corbyn’s office. Such was Lewis’s annoyance that he was said to have punched a wall after leaving the stage.

“I punched no walls,” he told me a month on from the speech. “Some people said to me ‘why don’t you just play along with it?’ Well, first of all it’s not true. And secondly, I am not prepared to allow myself to be associated with violent actions because it’s all too easy as a black man to be stereotyped as violent and angry - and I’m not. I’m not a violent person. Yes, it’s a bit of fun now, but very quickly certain elements of the media can begin to build up an image, a perception, a frame ... There’s a world of difference between violently punching a wall and being annoyed.”

Lewis said that he was “happy with” the speech he gave and that “you’re always going to have negotiation on lines”. The problem, he added, was “the timing”. But though the intervention frustrated Lewis, it improved his standing among Labour MPs who hailed him as the pragmatic face of Corbynism. His subsequent move to business was regarded by some as a punishment. “Do I think there was an ulterior motive? I’ll never know,” Lewis told me. “I’m confident that that the reason I was moved, what I was told, is that they wanted me to be able to take on a big portfolio”.

Nia Griffith, his successor as shadow defence secretary, has since announced that the party will support Trident renewal in its manifesto despite its leader’s unilateralism. “Jeremy Corbyn deserves credit for that,” Lewis said. “I think everyone understands that Jeremy’s position hasn’t changed. Jeremy still believes in unilateral disarmament, that is his modus operandi, that’s how he rolls and that’s one of the reasons why he is leader of the Labour Party ... But he’s also a democrat and he’s also a pragmatist, despite what people say.”

Lewis, himself a long-standing opponent of Trident, added: “You need a Labour government to ensure that we can put those nuclear missiles on the table and to begin to get rid of them on a global scale.”

He also affirmed his support for Nato, an institution which at times Corbyn has suggested should be disbanded. “The values that underpin Nato are social democratic values: liberty, democracy, freedom of expression. Let’s not forget, it was Clement Attlee and the New Deal Democrats that initiated and set up Nato. It’s about being in it to win it, it’s about winning the arguments inside Nato and making sure that it’s a force for good. Some people would say that’s impossible. I say you’ve got to be in it to be able to make those changes.”


Clive Anthony Lewis was born on 11 September 1971 and grew up on a council estate in Northampton. It was his Afro-Caribbean father, a factory worker and trade union official, who drew him to politics. “My dad always used to say “The Labour Party has fought for us, it’s really important that you understand that. What you have, the opportunities that working people and black people have, is down to the fact that people fought before you and continue to fight.”

After becoming the first in his family to attend university (reading economics at Bradford) he was elected student union president and vice president of the NUS. Lewis then spent a decade as a BBC TV news reporter and also became an army reservist, serving a tour of duty of Afghanistan in 2009. He was inspired to enlist by his grandfather. “He fought in Normandy in the Second World War and I used to go back over with him and see the camaraderie with the old paras ... Whatever people’s views of the armed forces, that’s one thing that no one can take away, they generate such friendships, such a bond of union”.

Lewis told me that his time in the military complemented, rather than contradicted, his politics. “I think many of the virtues and values of the army are very similar to the virtues and values of socialism, of the Labour Party. It’s about looking out for each other, it’s about working as a team, it’s about understanding. The worst insult I remember in the army is ‘jack bastard’. What that said was that you basically put yourself before the team, you’ve been selfish”.

He added: “People have to remember that the armed forces do as democratically elected governments tell them to do. They don’t arbitrarily go into countries and kick off. These are decisions that are made by our politicians.”

After returning from service in Helmand province, he suffered from depression. “I met guys who had lost friends, seen horrible things and they had ghost eyes, dead eyes, it’s the only way I can describe it. People that I saw had far more reason to have depression or worse. Part of my negative feedback loop was the fact that I felt increasingly guilty about being depressed because I didn’t feel that I had the right to be depressed because I knew people who’d seen far worse ...  I’m now told that is quite common but that doesn’t make it any easier.”

Lewis added: “It makes you realise that when the armed forces go abroad, when they do serve on our behalf, what they do, what they go through, that’s not something that anyone can take away from them.”

In May 2015, he was one of a raft of left-wing MPs (Richard Burgon, Rebecca Long-Bailey, Kate Osamor, Cat Smith) to enter parliament and back Corbyn’s leadership bid. As shadow business secretary, he believes that Brexit and Theresa May’s economic interventionism offer political openings for Labour. “I feel debate is moving onto natural Labour territory. But not the Labour territory of the 1970s, not picking winners territory. It’s moving to a territory that many on the left have long argued for, about having a muscular, brave, entrepreneurial state which can work in partnership with business”.

He added: “We can say we’re the party of business. But not business as usual ...  I think there are lots of people now, and businesses, who will be aghast at the shambles, the seeming direction we seem to be going in.

“The British people have spoken, they said they wanted to take back control, we have to respect that. But they didn’t vote to trash the economy, they didn’t vote for their jobs to disintegrate, they didn’t vote to see their businesses decimated, they didn’t vote to see a run on the pound, they didn’t vote for high levels of inflation.”

On the day we met, an Ipsos MORI poll put the Tories 18 points ahead of Labour (a subsequent YouGov survey has them 16 ahead). “I’m not too spooked by the polls at the moment,” Lewis told me when I mentioned the apocalyptic figures (he has a potentially vulnerable majority of 7,654). “Nobody wants to be where we are but I’m quite clear that once we get up a head of steam we’ll begin to see that narrow. I definitely don’t have any doubts about that, it will begin to narrow.”

Lewis is a long-standing advocate of proportional representation and of a “progressive alliance”. He told me that Labour, the Liberal Democrats and the Green Party should have fielded a single pro-European candidate in the recent Witney by-election (which the Conservatives won with a reduced majority) and that he was open to working with the SNP.

“There are lots of people, including the Scottish Labour Party, who are aghast that you can say that. I think it has to be put out there. I want to see a revival of Scottish Labour but we also have to be realistic about where they are, the time scale and timeframe of them coming back.

“I’m not talking them down, I’m simply saying that we want to see a Labour government in Westminster and that means asking some hard questions about how we’re going to achieve that, especially if the boundary changes come in ... If that means working with the SNP then we have to look at that.”

Even more strikingly, he suggested that Labour had to “think about talking to parties like Ukip to try and get over that finishing line.”

Lewis explained: “If Ukip survive as a political force these coming weeks and months they’re obviously pro-PR as well. I despise much of what Ukip stand for, it’s anathema to me, but I also understand that it could be the difference between changing our electoral system or not ... These are things that some people find deeply offensive but I’ve not come into politics to duck the tough issues." 

He praised Corbyn for “having won” the argument over austerity, for his “dignified” apology over the Iraq war and for putting Labour in surplus (owing to its near-tripled membership of 550,000).

“History will show that Jeremy Corbyn was someone who came in at a time when politics was tired, people were losing faith in it, especially people who come from the progressive side of politics.

“Whatever people think of Jeremy’s style, whatever they think of his leadership, whatever they think of him personally, you can’t take that away from him. He’s revived politics in a way that we haven’t seen in this country for a long time. I know he’s got his doubters and detractors but I think ultimately he’s made our party in many ways stronger than it was a year ago.”

I asked Lewis whether he expected Corbyn to lead Labour into the next general election. “Yes, I do. And I think it depends when that general election is. If it’s next year then most certainly.

“If it’s 2020? That’s a question for Jeremy. I think, as I understand it, he is going to but I don’t know the inside of his mind, I don’t know what he’s thinking. I haven’t heard anything to suggest that he has anything other than the intention to lead us into a general election and to become prime minister.”

Of his own prospects, he remained equanimous. “Always be wary of Greeks bearing gifts. It’s lovely to hear but I know my own fallibilities and weaknesses.

“I haven’t come from a background where I’ve had it imbued in me from an early age that I’m destined to lead or to rule. I don’t have that arrogant self-belief, the sense of entitlement that it’s coming my way or should do. I can’t believe I’m in the House of Commons and I can’t believe that I’m shadow business secretary. I still pinch myself. That’s enough for me at the moment, it really is. That’s the honest truth.”

George Eaton is political editor of the New Statesman.