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
Getty
Show Hide image

What happens when a president refuses to step down?

An approaching constitutional crisis has triggered deep political unrest in the Congo.

Franck Diongo reached his party’s headquarters shortly after 10am and stepped out of a Range Rover. Staff and hangers-on rose from plastic chairs to greet the president of the Mouvement Lumumbiste Progressiste (MLP), named after the first elected leader of the Democratic Republic of Congo.

Diongo, a compact and powerfully built man, was so tightly wound that his teeth ground as he talked. When agitated, he slammed his palms on the table and his speech became shrill. “We live under a dictatorial regime, so it used the security forces to kill us with live rounds to prevent our demonstration,” he said.

The MLP is part of a coalition of opposition parties known as the Rassemblement. Its aim is to ensure that the Congolese president, Joseph Kabila, who has been president since 2001, leaves office on 19 December, at the end of his second and supposedly final term.

Yet the elections that were meant to take place late last month have not been organised. The government has blamed logistical and financial difficulties, but Kabila’s opponents claim that the president has hamstrung the electoral commission in the hope that he can use his extended mandate to change the rules. “Mr Kabila doesn’t want to quit power,” said Diongo, expressing a widespread belief here.

On 19 September, the Rassemblement planned a march in Kinshasa, the capital, to protest the failure to deliver elections and to remind the president that his departure from office was imminent. But the demonstration never took place. At sunrise, clashes broke out between police and protesters in opposition strongholds. The military was deployed. By the time peace was restored 36 hours later, dozens had died. Kabila’s interior minister, claiming that the government had faced down an insurrection, acknowledged the deaths of 32 people but said that they were killed by criminals during looting.

Subsequent inquiries by the United Nations and Human Rights Watch (HRW) told a different story. They recorded more fatalities – at least 53 and 56, respectively – and said that the state had been responsible for most of the deaths. They claimed that the Congolese authorities had obstructed the investigators, and the true number of casualties was likely higher. According to HRW, security forces had seized and removed bodies “in an apparent effort to hide the evidence”.

The UN found that the lethal response was directed from a “central command centre. . . jointly managed” by officials from the police, army, presidential bodyguard and intelligence agency that “authorised the use of force, including firearms”.

The reports validated claims made by the Rassemblement that it was soldiers who had set fire to several opposition parties’ headquarters on 20 September. Six men were killed when the compound of the UDPS party was attacked.

On 1 November, their funerals took place where they fell. White coffins, each draped in a UDPS flag, were shielded from the midday sun by a gazebo, while mourners found shade inside the charred building. Pierrot Tshibangu lost his younger sibling, Evariste, in the attack. “When we arrived, we found my brother’s body covered in stab marks and bullet wounds,” he recalled.

Once the government had suppressed the demonstration, the attorney general compiled a list of influential figures in the Rassemblement – including Diongo – and forbade them from leaving the capital. Kinshasa’s governor then outlawed all political protest.

It was easy to understand why Diongo felt embattled, even paranoid. Midway through our conversation, his staff apprehended a man loitering in the courtyard. Several minutes of mayhem ensued before he was restrained and confined under suspicion of spying for the government.

Kabila is seldom seen in public and almost never addresses the nation. His long-term intentions are unclear, but the president’s chief diplomatic adviser maintains that his boss has no designs on altering the constitution or securing a third term. He insists that Kabila will happily step down once the country is ready for the polls.

Most refuse to believe such assurances. On 18 October, Kabila’s ruling alliance struck a deal with a different, smaller opposition faction. It allows Kabila to stay in office until the next election, which has been postponed until April 2018. A rickety government of national unity is being put in place but discord is already rife.

Jean-Lucien Bussa of the CDER party helped to negotiate the deal and is now a front-runner for a ministerial portfolio. At a corner table in the national assembly’s restaurant, he told me that the Rassemblement was guilty of “a lack of realism”, and that its fears were misplaced because Kabila won’t be able to prolong his presidency any further.

“On 29 April 2018, the Congolese will go to the ballot box to vote for their next president,” he said. “There is no other alternative for democrats than to find a negotiated solution, and this accord has given us one.”

Diongo was scathing of the pact (he called it “a farce intended to deceive”) and he excommunicated its adherents from his faction. “They are Mr Kabila’s collaborators, who came to divide the opposition,” he told me. “What kind of oppositionist can give Mr Kabila the power to violate the constitution beyond 19 December?”

Diongo is convinced that the president has no intention of walking away from power in April 2018. “Kabila will never organise elections if he cannot change the constitution,” he warned.

Diongo’s anger peaked at the suggestion that it will be an uphill struggle to dislodge a head of state who has control of the security forces. “What you need to consider,” he said, “is that no army can defy a people determined to take control of their destiny . . . The Congolese people will have the last word!”

A recent poll suggested that the president would win less than 8 per cent of the vote if an election were held this year. One can only assume that Kabila is hoping that the population will have no say at all.

This article first appeared in the 01 December 2016 issue of the New Statesman, Age of outrage