High on the list of this government's god-awful initiatives is a vile recent decision to close the Independent Living Fund and devolve it to councils. You may have been wondering how low things would go with this government. This story should give you some indication.
The ILF was set up in 1988 as a stand-alone fund to which people with severe disabilities could apply for money for added carer hours. 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 meant, in other words, that people with severe impairments could look forward to more than a life spent staring at walls in under-resourced care homes. Which is as you'd hope. Anyone who is even vaguely human wants to know that certain support systems are in place. Suffering a serious injury and/or disability, which let's not forget, any of us might, is surely challenging enough without also finding that your human right to independence is in society's ever-burgeoning "can't afford it" category.
I interviewed ILF recipients who are watching in fear as cuts start to bite – one was Sophie Partridge, who told me, in pure horror: "People in residential care – they're sitting around all day, waiting to go to the loo and all the rest of it. We can't go back 30-odd years".
Unfortunately, we are going back. Fast. As I say – the government has decided to close the ILF and devolve it to councils.
The Department for Work and Pensions (DWP) absolutely insists that this isn't a cut – that "the ILF will be incorporated into local social care arrangements… to ensure fair, targeted support." It will be a cut, though. Anyone who says that councils will be able to finance these complex care packages in this appalling funding environment, with monumental care funding gaps, is dreaming.
ILF recipients know this. In about a fortnight, in an effort to hang onto their vital funding, they will go to court to challenge the "consultation" exercise that led to the closure decision. Devolved ILF money won't be ringfenced. Amazingly, councils don't seem to know how much they'll get, or for how long: Islington – which part funds care for Sophie Partridge and recipient Penny Pepper, who I interview here – told me it did not know how much devolved funding it was in line for.
The inescapable fact is that cash-strapped councils can't meet care demands as it is. Provision is already a catastrophe. Councils are tightening care eligibility criteria and only funding people who have "substantial" or "critical" needs. False Economy's FOI numbers last year showed that more than 7,000 disabled and elderly people had lost some or all of their state-funded support after councils changed rules on who qualified. Councils have been taken to court for trying to restrict care, or for increasing charges, or for capping care packages.
Being placed in the "substantial" or "critical" bands is no guarantee your care needs will be met, either. This Lancashire woman, who has cerebral palsy and was in the "substantial" needs band, told me she had to stay in bed on weekends, because her care hours didn't stretch to weekends. This Cheshire woman, who has severe arthritis, had run out of care hours on the morning I visited. She was alone, unwell and lying next to a sick bucket – but her carer couldn't stay with her, because her hours were up. So much for the advance of civilisation.
The Disabled People Against Cuts organisation has the right answer to all of this: adequate, ringfenced funding – paid for by general taxation and national insurance contributions – for independent living support for anyone who needs it. We can afford it and we must afford it. The alternative? A society where people with severe mobility impairments get nothing, except years sitting in their own excrement.
But don't take my word for it. Listen to people who are living it:
Gabriel Pepper
Gabriel's had three brain tumours. He has sight, mobility and speech impairments. "I don't believe the Tory party will ever hang their heads in shame, but I believe it can be shown they're not above the law."
Kevin Caulfield
"The ILF closure is another nail in the coffin of the increasing numbers of disabled people being discarded into isolation, social exclusion, deteriorating health and premature death."
Penny Pepper
"You get a choice now between neglect at home, or residential care abuse."
