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
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The wildfire victims of forestry neglect - and the trees that saved them

Events in Portugal show how present mismanagement of the natural world reaches far beyond climate change, while also leaving communities more vulnerable to its effects.

When guesthouse owner Liedewij Schieving first heard about the wildfire in nearby Pedrogado Grande, she wasn’t overly concerned. “We always have fires here,” she explains at her home deep in the central Portugese forest.

It was only later that night, eating outside with her 11 guests, that the fear set in: “The wind was starting to smell and the sunset looked weird and dark.” By early the next morning the vast wall of flames had breached their remote valley. “I’ve never been in a war,” Liedewij says, still shaken, “but it was how I imagine war to sound.”

Soaring to temperatures of over 800 centigrade - high enough to melt windscreens and sink tyres into tarmac - the inferno eventually burned over 30,000 hectares of forest. By the time it was quelled, 64 adults and children had lost their lives, some dying trapped in their cars as they tried to escape down an unsafe road. “The biggest tragedy of human life we have known in years,” is how the country’s Prime Minister responded to the news on 18 June.

Two months later, the Pedrogado fire has proved the precusor to another summer of extreme weather events. Across southern and central Europe recent weeks have seen high winds and low humidity whip up wildfires everywhere from Spain to Serbia. At time of writing, 2,000 people in Portugal are trapped in the town of Mação as flames and smoke block their exit. In France, fires recently forced over 20,000 people from their homes and campervans.

Climate change is an unmistakable culprit. A Carbon Brief analysis of 140 studies from around the world found that 63 per cent of extreme weather events are linked to human-caused warming - making them either more likely or more severe.

Yet as countries assess the damage, evidence of humanity’s wider mismanagement of nature is also becoming harder to ignore. In Portugal, the excessive planting of eucalytpus trees is taking some of the blame for recent events. The species is the timber of choice for the country’s powerful paper industry, covering both industry-owned plantations and hundreds of tiny private smallholdings who sell it on. But it also happens to be highly flammable: think Grenfell cladding but spread over nearly a million hectares of land.

Liedewij’s story is evidence of this. Where dense eucalyptus forest once hid her home in dappled shade, the hillside is now charred and bare. “It was terrible,” she says of the moment she opened the gates for the farm animals before fleeing the valley, “we thought we were leaving them behind to grill”. Except that, as in all good disaster films, Liedewij’s goats didn’t burn - and nor did her picturesque house. Instead, fire-retardant willow trees by a nearby stream held the flames naturally at bay. On returning the next morning, she even found the hens laying eggs.

Liedewij Schieving outside her B&B at Quinta da Fonte - the bare hills behind the house show just how close the fire came.

Seen from above, her remote farmstead is now a tiny island of green amid a sea of black. She still panics at the smell from the woodfired heating, but support has poured in from friends both in Portugal and her native Holland, and she soon plans to fully re-open Quinta da Fonte B&B. Many guesthouses in nearby villages have already got back up and running.

Others among her neighbours, however, are not so lucky. Over 10,000 separate fires have destroyed 141,000 hectares of land in Portugal this year alone, with the annual cost of wildfire losses estimated to reach around €200m. A situation that risks further perpetuating the cycle of poverty and neglect that also played their part in the tragedy.

According to Domingos Patacho from the environmental NGO Quercus, the forest has become more hazardous as many of central Portugal's thousands of smallscale landholders leave their land untended to seek better wages elsewhere. Meanwhile, those who remain are often financially dependent on the income from the eucalyptus. They could choose to plant less flammable and water-hungry species, such as native corks or oaks, Patacho explains, but these can take twice as long to mature and provide a return.

The result is rising tension between the Portugese paper industry and the central government. After the June fire, the parliament pledged to push ahead with plans to limit the monoculture plantations. But the country’s Association of the Paper industry has previously warned that any ban on new plantations could hurt exports and jobs.

The reality is that both sides of the eucalyptus spread - both industry-owned and private - need improved regulation. But in a country only recently released from EU imposed austerity measures, debates over how enforcement could be financed are particularly tense. Not least since many areas do not even have an up to date land register, Patacho expplains.

At ESAC, an agrarian research base in central Portugal, professor Antonio Ferreira believes the time is now ripe for discussion between politicians, citizens and researchers about the future of forest land-use as a whole. The country needs to encourage people “to re-introduce native species, which will diversify the landscape and economic activity in those areas,” he says.

And the impulse is far from limited to Portugal. “We need to look at all the social aspects to get the full picture as well as the scientific side of forest management,” says WWF’s Jabier Ruiz of Europe’s wider wildfire problems. One route out of the woods may be greater EU policy support for those living in marginalised, rural areas, he adds.

What is clear is that as the continent warms, the need to improve the balance between social, environmental and commercial interests becomes ever more crucial. And while politicians debate, work at Liedewij’s home is already underway. Over the next few weeks, a group of her eco-minded friends, builders and topographers will help her re-build and re-landscape her farm. From digging terraces to stop landslides, to preventing the eucalyptus from re-emerging too close to the roads, their aim is to regrow a forest that works for all: a slow-burn project perhaps, but a bright one.

India Bourke is an environment writer and editorial assistant at the New Statesman.