John Kelly performing in Graeae’s production of Reasons To Be Cheerful. (Photo: Alison Baskerville)
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Back to basics: the government’s grim decision to kill off the Independent Living Fund for disabled people

Two years ago John Kelly, an artist and long-term wheelchair user, was singing at the Paralympics Opening Ceremony. Without the ILF this would never have been possible.

“My feelings are all over the place. Worry at not knowing what I’m likely to lose, not knowing or being able to try out what might go in its place to see if it works… not being involved in change that is about how I live my life. I worry about others, my loved ones, friends hoping I can maintain relationships and not have to rely more on them for help.”

It’s been a week since John Kelly heard that the government is going ahead with its closure of the Independent Living Fund – the standalone fund that helps him and 18,000 other people with severe disabilities to live in their own homes.

The Court of Appeal had quashed the government’s first attempt to do so, when five ILF users secured a widely celebrated victory in November. But despite the court ruling that the DWP had breached the Equality Act’s public-sector equality duty – finding that briefings given to the then disability minister Esther McVey by officials didn’t adequately make clear “the potentially very grave impact” the closure of the ILF could have on those using it – in fact, the judgment only meant the government had to reconsider its decision (this time paying “proper attention” to its legal obligations). Mike Penning, the current minister for disabled people, announced last week that this has now been done – and has simply moved the closure date for ILF back by three months to allow for time lost following the Court of Appeal judgment.

John, 44, has been relying on the support of ILF for over 20 years. He has a long-term joint impairment that means he uses a wheelchair. Like other ILF users, John needs help with aspects of day-to-day living: getting out of bed in the morning, going to the bathroom, getting something to eat.’

John Kelly performing at the Liberty Festival, Queen Elizabeth Olympic Park, 2013. (Photo: Sarah Murrison)

Before ILF, John tells me he relied on his mum for care and when she became ill with cancer, a care agency.

“It was very basic and a bit impersonal, run by the clock fitting all my needs into an hour here, an hour there,” he says. “The workers were lovely but often I wouldn’t know who was coming in [to my home] and obviously they didn't know much about me, where things were in my house, or how I did things.”

John describes ILF as “completing changing” his life. On top of the basic care costs his local council provides, ILF gives him 65 hours a week: allowing him to hire three to four personal assistants.

“I have choice and control over the basic but fundamental things”, he says. “I no longer have to fit my life into boxes and hourly care slots, I don’t have to worry as much about how long it takes me to shower or get dressed or go to the toilet.”

ILF means the basics of health and dignity: getting to the bathroom when you need it, having a hot meal, and living as an adult in your own home. It also means having the parts of life that can actually be defined as living: nipping to the shops, seeing friends, going to work.

John is an artist and has built a successful career working as a facilitator and musician. To the applause of David Cameron, two years ago he was singing Ian Dury’s 1981 song “Spasticus Austisticus” at the Paralympic Opening Ceremony as fellow performers waved placards for “Equality” and “Rights”. 

“I don't know what the future holds,” John tells me. “Not in the insecurities we all share, but… the basics. How many hours support I’ll have, will I have to decide between a shower and a meal because the care clock is ticking once again?”

“All because someone who doesn’t even know me has decided they know a better way for me to live independently,” he adds. “They consulted but the problem is they haven’t listened.”

 

John Kelly and the Graeae Theatre Company perform at Ronnie Scott's in London, 2011. (Photo: David Sinclair)

As John Pring noted on Disability News Service, when the Government consulted ILF users on its original decision to close the fund, the responses painted a chilling picture. “ILF allows me to do, as closely as possible, what normal human beings do. I do not do ‘activities’ or ‘access the community’ – I go out for a drive, for a picnic, to visit people, the kind of things ‘real’ people do,” described one respondent. “Before I was introduced to the ILF I was looked after by the local authority. I had no life at all, just a horrible existence. I didn’t get out of bed for months at a time. I was not encouraged to take part in life with the children. My care was extremely basic – to be kept clean, fed and medicated,” said another.

The closure of ILF means that people currently supported by it will, from 2015, be transferred to this local authority care provision. The money, crucially, won’t be ring-fenced – meaning local councils will have no obligation to spend it on current recipients. 

These are the same local councils that just last week have been found to be enduring such deep cuts that the UK is breaching the European charter of local self-government. Local authorities do “not have adequate financial resources” and this is likely to “get worse in years to come”, the Council of Europe said

“Local authority support for social care’s in crisis and things are going to get worse as central funding for local authorities is slashed,” Ellen Clifford, from Disabled People Against Cuts, the campaign who supported the legal challenge against ILF’s closure, tells me. “Social-care packages are ever diminishing, and increasingly stretched local authorities can’t fulfil the same outcomes as the ILF… We’ve seen [this already] with the impact on disabled people who missed out on ILF support following its closure to new applicants in December 2010.”

“Just today I attended a case conference with a disabled woman who has serious physical and mental health impairments and due to the fact that her needs are not being met [by her local authority] her children are being put on the ‘at risk’ register… Still with no forthcoming appropriate increase in support,” she says. “Disabled people's fundamental human rights are being infringed left right and centre by the increasing failings in local authority support.”

It was a year ago that Alan White and Kate Belgrave reported for the New Statesman that local authorities were already tightening care eligibility criteria so that they only fund people who have “substantial” or “critical” needs. The council facing a judicial review for capping care costs in a scheme where some disabled people were being told to find cheaper means of support such as receiving “their care in a residential or nursing home”. The woman who has cerebral palsy and is in the “substantial” needs band and has to stay in bed at the weekend, because her care hours don’t stretch to weekends. Research by the Financial Times this month declared there’s now a £20bn black hole in the public finances  – suggesting that even greater cuts will have to be made to social security and cash-strapped local government because other key areas of spending (such as the NHS and schools) are protected. Things are getting worse, not better.

As Kate put it: “Anyone who says councils will be able to finance these complex care packages [of ILF users] in this appalling funding environment, with these monumental care funding gaps, is either dreaming, or lying.”

Perhaps the worst thing is that this isn’t news to the Government. It knows exactly what closing the ILF will mean for the people relying on it. Just last week, its own analysis admitted that it’s “almost certain that closure of the ILF will mean that the majority of users will face changes to the way their support is delivered, including the real possibility of a reduction to the funding they currently receive”. [My italics] This could mean “the loss of a carer or personal assistant”, it adds.

I speak to John from the road, travelling from his flat in South London to the first date of his tour. He’s performing in The Threepenny Opera this month; enabled, as always, by the system of support he has built with ILF over years. “Imagine a world where evil goes unpunished and lowly souls remain on the poverty line,” the promotional blurb of the show reads. John suggests it seems fitting for the times we’re in.

“I’m worried about losing what I’ve worked so hard to achieve in order to manage my own life,” he tells me. “I’m fearful of enforced, rushed, ill-considered changes for political point scoring, fearful of the experiments with my life…”

“I’m angry [too],” he says. “We shouldn’t have to be fighting for such basic things in 2014, in the UK, in a civilised, democratic, ‘world leading’ country…. [But I will do. I’ll] fight for the same choice and control to be able to participate, contribute and live a full meaningful life.” 

John Kelly performing. (Photo: Patrick Baldwin)

The fight continues,” Ellen says. “We’re seeing… how local authority support is failing to meet the needs and rights of disabled people under the UN Convention on the Rights of Persons with Disabilities. The strength and resolve of grassroots disabled people got us this far and we’re not giving up now. This has never just been about protecting support for existing ILF recipients, however important that certainly is, but it’s also about the fundamental right to independent living for all disabled people.”

“I’m not fighting for more or extra, just for the same,” John tells me. “The only time usually a government or society takes these kinds of freedoms away are when we’ve broken the law and go to prison,” he adds. “And it isn’t me that’s robbed the bank.” 

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

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.