You might not have heard of it, but for around 18,000 of the most severely disabled people in Britain, the Independent Living Fund means the difference between an ordinary life and no life at all. ”No ILF. No Life” is how disability rights campaigners put it. Set up in 1988 by Margaret Thatcher’s government, it is designed for people with high support needs to live in the community and to lead the sort of lives the rest of us take for granted, people who would otherwise be trapped in residential homes. But at the end of this month, after 27 years, this fund will be no more. The consequences for its recipients could be nothing short of devastating.
Before receiving support from the ILF, life was ”hell on earth” for Anne Pridmore, 75, from Leicestershire. Anne has cerebral palsy and is unable to walk at all. She has 24/7 support needs, needing assistance to wash, dress, cook, and go to the toilet. With ILF support, she has been able to build a life and career for herself – setting up ”Being the Boss”, a consultation service for disabled people. Over half of the funding for Anne’s personal assistants comes from the ILF. Without it, she is worried she will be left using incontinence pads for much of the day. ”I suffer from breaking of the skin. If I had an incontinence pad I would end up in hospital for a skin graft”, she said to me. ”I will lose my support and will become a prisoner in my own home or be forced into residential care… We have gone back 30 years with [Cameron]”.
Similar fears plague on Sean McGovern, 58, from Lambeth, South London. ”For me it’s a life-saver. There are a thousand and one activities which I can get on with which I would not be able to on my local authority budget.” Sean is left-hemiplegic – unable to use the whole of the left side of his body after a physical assault by a gang. Despite needing a wheelchair, he is physically fit, saying the ILF allows him to go swimming regularly. Like Anne, he worries about toileting: ”If I have an accident in the night and my PA comes round to clean up the bed, that’s when I use ILF money.” Sean is an active campaigner, sitting on the TUC’s disabled workers’ committee, but he says it ”would be very difficult without ILF, almost impossible. I need PAs with me when I travel.” Sean quotes the great US labour-organizer Rose Schneiderman, saying ”Yes we need bread, but we also need roses”, saying it allows him to ”Go to the pub. Go to the theatre, cinema. Visit your family and friends”, adding ”ILF gave us that freedom… It will cause massive social isolation”.
With ILF support, Sophie Partridge, 46, has managed to develop a career as a creative performer, having performed with theatre workshops at the Edinburgh Festival. This is no mean feat for her – born with brittle bone syndrome, Sophie has severely foreshortened limbs. ”My big fear is losing my personal assistants at night,” she says. “It doesn’t bear thinking about”. Sophie explains that she would not be able to work as a performer without the 24 hour care ILF provides. Sophie is luckier than most, though, living within the affluent and sympathetic local authority of Islington in London. ”It’s a postcode lottery’,’ she says.
”Before ILF days, most people of my level of support needs were in residential homes… I can’t go there in my head really,” Sophie says. Panic and uncertainty about institutionalization is widespread. Ellen Clifford, campaigns officer for Inclusion London, says ”One of the biggest issues will be people just sitting at home, isolated and neglected… A lot of the ILF users we speak to say I’d rather be dead than go to a nursing or residential home…people are scared, really really scared”.
In 2010, the ILF was closed to new applicants. Inevitably, there are now hundreds of severely disabled people around the country who need the support but were not able to apply. One disabled student who missed out on the ILF explained to Inclusion London: ”My mum had to help with my care at the weekends to give my PA a break. This was frustrating for my mum and I because she had to drive down to the university every weekend, when she [was] also the main carer for my Grandmother who has dementia.” The budget for ILF will now fall each year because of ”natural attrition” – the government’s euphemism for people dying off. Eventually, there will be no recipients at all.
Costing central government some £262 million a year across the country – pocket change in government terms – any pretence that this cut is necessary for dealing with the deficit is bogus. Indeed, central government administration costs – at roughly 2% – are significantly below those of local authorities at 16%, who will now pick up the bill. But perhaps most bizarrely, the ILF is very labour-intensive, with almost all the money paying the wages of personal assistants. ”I am employing seven people here – they all have spending power, paying taxes”, Anne Pridmore told me. A cheap, effective way to stimulate local economies. Not just cruel and heartless, but utterly economically misguided too. ”Friends and family will have an extra burden” as a result, says Ellen Clifford.
The government say they’re not cutting the fund, they are merely transferring the fund to local authorities. What the government does not admit is that this is only for one year, and that the fund has not been ring-fenced. With local authorities in England having endured cuts of 27% over the first five years of Cameron’s premiership, local authorities will struggle to cover the shortfall. Ellen Clifford told me that of 141 councils surveyed, only 33 have ring-fenced it. ”The Care Act brings in the wellbeing duty… But that’s obviously open to wide interpretation. And if they are worried about their resources…”
Fighting back is no easy task for people like Anne, Sophie, and Sean. ”For disabled people to get to London is a big ordeal,” Anne Pridmore explains. But fightback they have. Disabled People Against Cuts even took the radical step of taking the government to court claiming the government were not aware of the impact on disabled people when the decision to close ILF was taken. Almost unbelievably, the case was thrown out, not on the grounds that the minister did not know, but that the minister knew it would be devastating – but went ahead anyway. ”The information provided to the minister identified in sufficiently unambiguous terms the inevitable and considerable adverse effect which the closure of the fund will have, particularly on those who, as a consequence, will lose the ability to live independently.” said Mrs Justice Andrews. With the appointment of Justin Tomlinson as Minister for Disabled People, Ellen Clifford says, ”it’s as if they’ve deliberately gone for someone as unsympathetic to disabled people as possible.”
On the 24th June, DPAC will meet with MPs to highlight the plight of those set to lose ILF support. Those of us with the physical means have a responsibility to show solidarity with the victims of ILF’s closure, and to send a strong message to Cameron’s government about the sort of country we want to live in. The independence and wellbeing of Anne, Sophie, Sean and thousands of others depends on it.