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.

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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
Photo: Getty
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Birmingham Labour members were almost disenfranchised, until Corbyn intervened

Newer members were to be denied a say in selecting candidates.

For decades, Labour members in Birmingham have had to wait for a year after joining the party to vote to select local candidates – unlike the six-month national rule. New ward boundaries for Birmingham City Council, the largest local authority in Europe, will be contested for the first time next year during an all-out election – and a reduction from 120 to 101 members means every Labour candidate, including sitting councillors, must be selected.

However, Labour’s Birmingham Board decided that to vote in the upcoming selection meetings, members must have been in the party for a year prior to their call for candidate applications in 2016. As a result, if you wanted to have a say, the cut-off date for being a party member was July 2015: two years ago.

It took the intervention of Jeremy Corbyn turning up at an obscure local meeting in order to vote for this two-year cut-off date to be replaced by a six-month minimum period. This has enfranchised the vast majority of Labour members, many of whom were increasingly annoyed with the original decisions taken by the Birmingham Board.

One of those who would have been disenfranchised if the board had had its way is Birmingham councillor Liz Clements, who re-joined the party as soon as Corbyn was first elected leader in 2015. Twenty years ago, she was an Oxfordshire County Councillor, and, in 1999, a European parliamentary candidate. While studying at at Oxford, in the same year as Yvette Cooper, she chaired the university Labour Club for a term in 1989. This year she was selected to contest the marginal Hall Green ward in a by-election, and, had the original rules been in place, she would have been unable to vote for herself (or anyone else) to be selected for council elections next year.

She says: “For me it was simply a matter of fairness and democracy. I couldn’t understand why the national rule wasn’t being applied. I found it very odd that I could seek selection as a councillor and get elected before I’d be eligible to vote in a selection meeting myself.”

She feels the two-year cut-off would have sent a message to new joiners and re-joiners alike that they were “second-class members”.

"During the general election we succeeded in firing up our membership with enthusiasm for the Labour manifesto and for our Labour candidates – people came out to campaign in large numbers. The proposed freeze date was divisive and would have discouraged newer members from campaigning in next year’s council elections.”

Before the Birmingham Board met, a large number of branch and constituency-level Labour groups passed motions calling for the freeze date to be scrapped. Councillor Clements was not at the Board’s meeting, so can’t comment on why they chose to ignore the members. From speaking with other party members, it's clear there was a widespread belief that this was done deliberately so unpopular councillors could cling to power.

With every ward holding selection meetings, there is am opportunity to clear out the dead weight and for fresh talent to revitalise the council, which is currently struggling to keep up with the austerity cuts imposed by central government. Some sitting councillors are retiring or facing scrutiny of their records, and may not even be shortlisted for selection. The Birmingham Board, after all, can veto any candidate before selection, including current councillors with poor attendance and casework records.

It therefore isn’t surprising that Councillor Clements doesn’t believe these rule changes will actually result in different candidates being selected. For her, it was about Labour values. “Corbyn listened to members and asserted the importance of democracy, fairness and inclusion”.

One reason it is arguable the selected candidates would remain the same is that Birmingham is struggling to attract enough people to stand for selection in the first place. There is, particularly, a shortage of women putting themselves forward. Liam Byrne MP is understood to have suggested relaxing the Labour Party rule demanding that at least one woman in selected in multi-member seats. It would be an extremely unpopular decision with many members, but there aren’t currently enough women candidates for the 32 two-member wards.

Councillor Clements says we should stick to the party’s rules as they are, but we need more women and BAME candidates. There are other options being suggested; re-opening nominations if no women have declared an interest in time, allow some wards to select two men if a neighbouring single-member ward selects a woman, relax the rule entirely, demand local parties re-advertise the space and find women candidates, or something else entirely.

Selections are underway, but most will take place in September, as many wards now need to find larger venues to hold the meetings. This will give candidates eight months to campaign before the Birmingham City Council elections next May.

Its current (and likely future) leader, John Clancy will almost certainly remain in post. Results from the general election showed many areas, previously thought to be unwinnable or marginal for Labour, have become either safe or eminently winnable. If Labour can keep itself above 40 per cent in the polls, we may well see a huge influx of new councillors representing people across Birmingham. The difference now Corbyn has stepped in, is that there is a real chance most candidates and councillors will be united by a belief in Corbyn, and his manifesto.

David Barker is a writer and journalist based in Birmingham, and press officer for Bournville Labour Party