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.

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Is Google Maps discriminating against people with disabilities?

Its walking routes are not access-friendly.

“I ended up having to be pushed through a main road in London, which was really scary.” Three weeks ago, Mary Bradley went to London to visit her daughter Belinda, who is just finishing her first year at university there. Her other daughter joined them on the trip.

But what was supposed to be an enjoyable weekend with her two children turned into a frustrating ordeal. The apps they were using to find their way around kept sending them on routes that are not wheelchair-friendly, leading to time-consuming and sometimes frightening consequences.

Bradley has been using a wheelchair – when having to go longer distances without a vehicle – for over a year, due to a 45-degree curve in her spine, severe joint facet deterioration in her back, and other conditions.

She lives in Weston-super-Mare in Somerset, and has made the trip up to London to visit her daughter a handful of times. Each visit, they use Google Maps and the transport app Citymapper to find their way around, as neither of them know London particularly well.


Belinda and Mary Bradley. Photo: Belinda Bradley

“It was just horrible,” says Bradley of her most recent trip to the capital. “We’re following the maps, and we go along, then find we are faced with a footbridge, and realise there was no way I was going to get over it, so we had to go back the way we’d come. At one point, we were faced with a strip of narrow pavement the wheelchair couldn’t go down. That was something we found all weekend.”

While Google Maps did highlight accessible Tube stations, they found that once they had alighted to do the rest of the journey to their destination on foot, “it took us three times as long, because the route that it takes us just wasn’t passable”.

They ended up having to try different routes “having no real idea of where were going”.

“It meant that it took so much longer, the girls ended up having to push me for longer, I got more and more embarrassed and frustrated and upset about the whole thing,” Bradley tells me.

At one point, her daughters had to take her down a main road. “Being pushed on a road, especially in London, is scary,” she says. “It was scary for me, it was scary for the girls.”

When they returned home, Belinda, who is a 19-year-old Writing and Theatre student at the University of Roehampton, was so furious at the situation that she started a petition for Google Maps to include wheelchair-friendly routes. It hit over 100,000 signatures in a fortnight. At the time of writing, it has 110,601 petitioners.


Belinda's petition.

Belinda was surprised that Google Maps didn’t have accessible routes. “I know Google Maps so well, [Google]’s such a big company, it has the satellite pictures and everything,” she says. “So I was really surprised because there’s loads of disabled people who must have such an issue.”

The aim of her petition is for Google Maps to generate routes that people using wheelchairs, crutches, walking sticks, or pushing prams will be able to use. “It just says that they’re a little bit ignorant,” is Belinda’s view of the service’s omission. “To me, just to ignore any issues that big needs to be solved; it needs to be addressed almost immediately.”

But she also wants to raise awareness to “make life better in general” for people with disabilities using navigation apps.

Belinda has not received a response from Google or Citymapper, but I understand that Google is aware of the petition and the issue it raises. Google declined to comment and I have contacted Citymapper but have not received a response.

Google Maps does provide information about how accessible its locations are, and also allows users to fill in accessibility features themselves via an amenities checklist for places that are missing that information. But it doesn’t provide accessible walking routes.

“There’s no reason that they couldn’t take it that bit further and include wheelchair accessible routes,” says Matt McCann, the founder of Access Earth, an online service and app that aims to be the Google Maps for people with disabilities. “When I first started Access Earth, I always thought this is something Google should be doing, and I was always surprised they haven’t done it. And that’s the next logical step.”

McCann began crowdsourcing information for Access Earth in 2013, when he booked a hotel in London that was supposed to be wheelchair-friendly – but turned out not to be accessible for his rollator, which he uses due to having cerebral palsy.

Based in Dublin, McCann says Google Maps has often sent him on pedestrian routes down cobbled streets, which are unsuitable for his rollator. “That’s another level of detail; to know whether the footpaths are pedestrian-friendly, but also if they’re wheelchair-friendly as well in terms of the surface,” he notes. “And that was the main problem that I had in my experience [of using walking routes].”

Access Earth, which includes bespoke accessibility information for locations around the world, aims to introduce accessible routes once the project has received enough funding. “The goal is to encompass all aspects of a route and trip,” he says. Other services such as Wheelmap and Euan's Guide also crowdsource information to provide access-friendly maps.

So how long will it take for more established tech companies like Google to clear the obstacles stopping Mary Bradley and millions like her using everyday services to get around?

“You can use them for public transport, to drive, you can use them if you’re an able-bodied person on foot,” she says. “But there are loads of us who are completely excluded now.”

Sign Belinda Bradley’s “Create Wheelchair Friendly Routes on Google Maps" here.

Anoosh Chakelian is senior writer at the New Statesman.