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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The Prevent strategy needs a rethink, not a rebrand

A bad policy by any other name is still a bad policy.

Yesterday the Home Affairs Select Committee published its report on radicalization in the UK. While the focus of the coverage has been on its claim that social media companies like Facebook, Twitter and YouTube are “consciously failing” to combat the promotion of terrorism and extremism, it also reported on Prevent. The report rightly engages with criticism of Prevent, acknowledging how it has affected the Muslim community and calling for it to become more transparent:

“The concerns about Prevent amongst the communities most affected by it must be addressed. Otherwise it will continue to be viewed with suspicion by many, and by some as “toxic”… The government must be more transparent about what it is doing on the Prevent strategy, including by publicising its engagement activities, and providing updates on outcomes, through an easily accessible online portal.”

While this acknowledgement is good news, it is hard to see how real change will occur. As I have written previously, as Prevent has become more entrenched in British society, it has also become more secretive. For example, in August 2013, I lodged FOI requests to designated Prevent priority areas, asking for the most up-to-date Prevent funding information, including what projects received funding and details of any project engaging specifically with far-right extremism. I lodged almost identical requests between 2008 and 2009, all of which were successful. All but one of the 2013 requests were denied.

This denial is significant. Before the 2011 review, the Prevent strategy distributed money to help local authorities fight violent extremism and in doing so identified priority areas based solely on demographics. Any local authority with a Muslim population of at least five per cent was automatically given Prevent funding. The 2011 review pledged to end this. It further promised to expand Prevent to include far-right extremism and stop its use in community cohesion projects. Through these FOI requests I was trying to find out whether or not the 2011 pledges had been met. But with the blanket denial of information, I was left in the dark.

It is telling that the report’s concerns with Prevent are not new and have in fact been highlighted in several reports by the same Home Affairs Select Committee, as well as numerous reports by NGOs. But nothing has changed. In fact, the only change proposed by the report is to give Prevent a new name: Engage. But the problem was never the name. Prevent relies on the premise that terrorism and extremism are inherently connected with Islam, and until this is changed, it will continue to be at best counter-productive, and at worst, deeply discriminatory.

In his evidence to the committee, David Anderson, the independent ombudsman of terrorism legislation, has called for an independent review of the Prevent strategy. This would be a start. However, more is required. What is needed is a radical new approach to counter-terrorism and counter-extremism, one that targets all forms of extremism and that does not stigmatise or stereotype those affected.

Such an approach has been pioneered in the Danish town of Aarhus. Faced with increased numbers of youngsters leaving Aarhus for Syria, police officers made it clear that those who had travelled to Syria were welcome to come home, where they would receive help with going back to school, finding a place to live and whatever else was necessary for them to find their way back to Danish society.  Known as the ‘Aarhus model’, this approach focuses on inclusion, mentorship and non-criminalisation. It is the opposite of Prevent, which has from its very start framed British Muslims as a particularly deviant suspect community.

We need to change the narrative of counter-terrorism in the UK, but a narrative is not changed by a new title. Just as a rose by any other name would smell as sweet, a bad policy by any other name is still a bad policy. While the Home Affairs Select Committee concern about Prevent is welcomed, real action is needed. This will involve actually engaging with the Muslim community, listening to their concerns and not dismissing them as misunderstandings. It will require serious investigation of the damages caused by new Prevent statutory duty, something which the report does acknowledge as a concern.  Finally, real action on Prevent in particular, but extremism in general, will require developing a wide-ranging counter-extremism strategy that directly engages with far-right extremism. This has been notably absent from today’s report, even though far-right extremism is on the rise. After all, far-right extremists make up half of all counter-radicalization referrals in Yorkshire, and 30 per cent of the caseload in the east Midlands.

It will also require changing the way we think about those who are radicalized. The Aarhus model proves that such a change is possible. Radicalization is indeed a real problem, one imagines it will be even more so considering the country’s flagship counter-radicalization strategy remains problematic and ineffective. In the end, Prevent may be renamed a thousand times, but unless real effort is put in actually changing the strategy, it will remain toxic. 

Dr Maria Norris works at London School of Economics and Political Science. She tweets as @MariaWNorris.