As in the Society Guardian today and the print version tomorrow:
The people in the videos on this page are all recipients of Independent Living Fund payments.
The ILF was set up in 1988 as a standalone fund to which people with severe disabilities could apply for money for added carer hours (the ILF tops up council care funding for recipients in this article). That extra money meant that people could afford to pay carers for the help that they needed – round-the-clock, in some cases – to live independent lives. It kept people out of residential care.
In 2010, the Independent Living Fund was closed to new applicants. Then in 2012, the coalition government announced that it would “consult” on the future of the fund for the ILF’s 19,000 existing users. The upshot of this was, towards the end of last year, an extremely unpopular decision to close the fund and devolve it to local authorities.
The money will not be ringfenced. It will be left to already cash-strapped councils to fund care for people with the most complex – and expensive – needs. That prospect is dire in the current council funding “environment. Councils can’t meet demand as it is. Many are tightening eligibility criteria for care. FOI numbers reported in the Independent last year showed that more than 7000 disabled and elderly people had lost some or all of their state-funded support after cash-strapped councils changed their rules on who qualified for social care. Councils have already been taken to court for trying to restrict care services, or for increasing charges for care, or capping the amounts that they spend on claimants.
There are links to more stories about the ILF closure at the end of this post.
Sophie Partridge (writer and actor. Requires 24-7 care support. Islington council pays for some of that care and the ILF the rest).
“We can’t be cast as victims all the time. It’s difficult, because we do have to fight the good fight wthout appearing pathetic cripples.
My PAs (carers) do everything physically that I can’t do for myself – like me getting up, going to the loo, washing, dressing, cooking for me, cutting my food up, cleaning, laundry, driving me in my van… the idea of going into a carehome is too scary to even contemplate to be honest with you. We have to ensure that that does not happen.”
Gabriel Pepper (Walthamstow writer. Waltham Forest council pays about a third of his care costs and the ILF the rest)
“I’ve had three brain tumours. The [third] tumour is deep frozen in my brain through a process which has changed the DNA somehow.
I don’t believe that the Tory party will ever hang their heads in shame, because they don’t have shame, but I believe that it can be shown that they’re not above the law. And I think that people should be prosecuted for crimes which they have done against humanity.”
Penny Pepper (Islington writer and journalist: Also requires 24-7 PA support. Islington council pays for just over half of that support and the ILF the rest).
“I’m assessed as needing 24/7 (care) and ILF pay roughly just under half of that and Islington council pays the rest. The council funding would not be enough to retain my personal assistants.
This bizarre idea that you can eat sandwiches and lie in bed and use incontinence pads that is coming our way – that will effectively mean the end of my career… You’re faced with these choices now. It’s like – [you can choose] neglect at home, or residential care abuse. A lot of us are saying – [we prefer] neglect.”
Kevin Caulfield (working and studying to be a barrister. Care part-funded by Hammersmith and Fulham council and the ILF):
“[I started by] using domiciliary care agencies – which were not meeting my needs. A different person was coming from the agency every day. I was a man in my 30s and I was having to go to be at 9.30, ten o’clock in the evening. It was incredibly stressful,
particularly for somebody who had recently acquired a significant impairment.
[Consistent care] has enabled me to stabilise my health. I’ve been able to work during the last 20 years, 15 years. I’ve been able to go to college – I’m training to be a barrister. These are things that I would have been able to do in my life if I wasn’t a disabed person – but certainly things that I couldn’t do without the support of my local council [with a payment] which is backed up with top up money from the Independent Living Fund.”
More on the ILF:
Discussions with people affected by the closure of the Independent Living Fund
DPAC: vigil at court hearing to save the Independent Living Fund