This is the first of a collection of videos featuring people who will be directly affected by the government’s atrocious decision to close the Independent Living Fund (the ILF).
The ILF was set up in 1988 as a standalone fund which people with severe disabilities could apply to for extra money to pay for added care and support. That additional funding made it possible for people to live independently in their homes, rather than in residential care. For some people, the ILF paid for entire care packages. For others, ILF money was used to top up council funding for care. Most of the people who appear in these videos require round-the-clock care which – unsurprisingly – comes with a price tag.
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.
“In terms of independent living, this is the single most regressive action that the Condems could have taken,” DPAC’s Linda Burnip emailed to say. Indeed.
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 makes the whole prospect a complete shambles. Councils can’t meet demand as it is. Many are tightening eligibility criteria for care and have been taken to court for trying to restrict services, or for capping the amounts that they spend on claimants. Last year, as an example, Worcesterchire county council came up with a so-called maximum expenditure policy – meaning that if paying for someone to live at home with carers cost more than residential care, the individual would have to make up the difference themselves, or go into residential care – the sort of idea which would, as Sophie Partridge says in the video below, take everyone back to a time when people were hidden away in homes and made to sit around in incontinence pads.
So much for the advance of civilisation.
In this video, Penny Pepper – an Islington journalist and writer who has been receiving ILF payments for about 15 years – gives her views on the planned devolution.
The video starts with a few comments from Pepper about a letter (she’s holding it in the video) on the ILF closure which she received from her local MP Emily Thornberry – a letter that she says “doesn’t have any balls.”
Pepper requires round-the-clock care support. Islington council funds just over half of that. The ILF pays for the rest.
She believes that an independent funding structure like the ILF – run by people with disabilities themselves – is crucial to ensuring funding for people with complex needs.
She also says that she has found the political response to the government’s devolution proposal discouraging, to say the least. You’ll see in the video that she’s particularly disappointed with the response from Emily Thornberry, her local MP (I’ve asked Thornberry for her views on her own representation of people on this issue and had nothing back. Will keep you posted on developments if there are any).
In this video, freelance creative practitioner Sophie Partridge, who is also a long-term ILF recipient and who also lives in Islington, voices similar concerns about a lack of political representation. She thinks that people with disabilities tend to serve as pawns in funding wars.
Any loss of care funding and hours could see her forced into residential care – an option that she says she will not contemplate. She says that councils should have fought harder to keep the ILF intact.
The lack of information that councils appear to have – or, at least, are prepared to release – about upcoming ILF responsibilities is purely amazing. Islington council (which part-funds care packages for Sophie Partridge and Penny Pepper) told me that it couldn’t predict whether or not it could match ILF funding, because the council “did not yet know the total amount to be devolved to local authorities.” Neither did the council know if it would need to fund extra staff, saying: “we do not yet know whether additional resources will be provided as part of the transition.” The council merely said, fluffily, that it would “always seek to meet people’s eligible needs in an appropriate way within available council resources.”
“Within available council resources.” Not a phrase to inspire confidence in this era.
Neither is this sentence [from the DWP]. “All disabled people, including those transferring from the ILF, will continue to be protected by a local authority safety net that guarantees disabled people get the support they need,” runs the fantasy that the DWP has posing as a ILF press release. A couple of weeks ago, I had an utterly painful phone conversation with a DWP press officer who insisted (and insisted) that the department’s ILF devolution plans must not be reported as a “cut.” I can see from your website that you write about cuts and this is not a cut! the press officer said several times. Loudly. It’s not a cut!
My two cents as I wrote in this short piece in the Guardian: if you believe that, you’ll believe anything. ILF recipients certainly don’t: a group of claimants has started court proceedings to challenge last year’s “consultation” on the closure. It’s the wider context that is the issue here. Council budgets and services are being obliterated. As things stand, an increasing number of councils now only fund people whose needs are assessed as substantial or critical in fair access to care bands. Being placed in the substantial or critical bands is no guarantee that your needs will be met, either. I’ve interviewed people who already struggle to pay for the care they need: this Lancashire woman, for example, who had been placed in the substantial band, told me that she had to stay in bed on weekends, because her care hours didn’t stretch to Saturdays and Sundays. This Cheshire woman, who was also in the substantial needs band, had run out of care hours on the day that I visited. I found her alone in her home lying next to a sick bucket. Who honestly thinks that the future holds local authority safety nets?