Update 4 June
This post is about the closure of the Independent Living Fund on 30 June.
The ILF was set up over 25 years ago to pay for extra carers for disabled people with very high needs. The ILF pays the wages of the personal assistants who help disabled people wash, dress, eat, go to college, get to work and go out to social events. In a lot of cases, the total cost of people’s care packages are met partly by their local councils and partly by the ILF. A number of ILF recipients require personal assistance around the clock. The government will close the ILF in just a few weeks’ time on 30 June. ILF recipients will rely entirely on their cash-strapped councils to pay for their care. The government insists that ILF money will be devolved to councils to cover the extra costs, but there’s considerable doubt about how long that will last and the money won’t be ringfenced by most councils. The Association of Directors of Adult Social Services is saying today that £1bn will be cut from social care services for older and disabled people in the coming year. You can see why ILF recipients are concerned about their futures.
The DWP insisted to me yesterday that “every effort has been made to ensure a smooth transition to sole local authority care and support for all ILF users by 30 June 2015.” I have serious doubts about this so-called smooth transition as well. As you can see from the interviews in the article that I posted earlier this week (the article is below), there’s nothing smooth about the way things are going for some people. Even at this stage, people are still waiting for their cases (and their eligibility for more council care funding to cover all their care costs) to be reviewed by their councils, or they’re still waiting to hear the outcomes from reviews. Some people have been told their care will be funded at current levels for short periods like six months and then reviewed, or that their care will be funded until their cases are reviewed, whenever that is. A couple of people I’ve spoken have been told that their funding should be met for a year from 30 June, but that they have no idea what will happen after that. People say that they are feeling extremely anxious as they wait to hear what will happen next and for their cases to be reviewed.
I wonder again why the government insists this fund is closed. The ILF hasn’t taken new applicants for five years, so the government and the DWP could simply have left existing applicants to it. There was no need to go after people in this way. Only about 17,000 people receive ILF funding. It’s hard to understand why the coalition government went to such lengths to target that small group, or why the new administration insists on going ahead with the closure and putting people through all of this. The stress that this mess has caused for people in the three years since the last government announced the ILF would close has been unreal – and a human rights violation, I would have thought. The stress goes on as people try to work out what will happen after 30 June and how long any support they’re offered after that date will last.
I’ll add to this blog as things go on this month.
Some more updates from the last few days:
Mark Williams, who lives in Bristol, says that the council hasn’t carried out his review yet. He says he’s been told that his funding support will continue until that review is done. In the meantime, he waits. “I have very little confidence how it will all work,” he says. “Many people are very worried.” (Mark appears in this short video, where he talks about his work and life and the ILF):
We’re all in it together – aren’t we? from Moore Lavan Films on Vimeo.
One recipient in Northeast London has told me that his care needs were assessed by his council just this week. The assessor told him that the council would try to help, but that ILF funding wasn’t ringfenced at his council, that people had to argue for care and that ultimately, council funding decisions are made by a relevant panel. He felt that the assessor was on side, but must now wait for the panel decision.
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Original post – 2 June:
There is confusion all over with just a few weeks until the Independent Living Fund closes. It’s looking more and more like disabled people who rely on the ILF for care funding are on course for a very bad deal:
In just under a month, this already-rotten government will close the Independent Living Fund.
If you had some idea that the Tories planned to keep a safety net for people who need it, the ILF closure should permanently relieve you of that idea. The ILF is a fund used by profoundly disabled people to pay for the extra carer hours that they need to live as independent adults in their own homes. The fund pays the wages of the personal assistants who help disabled people wash, dress, eat, go to college, get to work, make their way to social events and all the rest – the everyday activities that everyone else expects to takes part in because they want to and they can.
Needless to say, the Tories want to put an end to that independence (and to disabled people altogether, on this evidence). The ILF closes on 30 June 2015. I’ve been speaking to ILF recipients in the last few days. People still have no idea what will happen to their care packages after 30 June. They are not at all sure that their local councils will pick up the costs of the care that the ILF has paid for to date. One ILF recipient, Anne Pridmore, just told me that her council has agreed to meet the cost of her carers at ILF levels until October – but that the council will use the months between July and October to try and wean her off her need for carers and teach her to use assistive technology as a sort of replacement. “No amount of assistive technology is going to help me get on and off the toilet on my own,” Anne said.
The government says it will devolve ILF money to councils in the first instance – but there’s no guarantee that money will be devolved for long and/or at decent rates (I’d personally put my last pound on the exact opposite happening, given this administration). Neither is there any guarantee that councils will ringfence devolved ILF funds for social care. Many disabled people use ILF money to pay for extra carer hours that their already cash-strapped local authorities can’t afford and won’t be able to afford when councils take further funding hits. That leaves disabled people people with two very unsavoury choices (and remember this – if you’re not disabled at the moment, but become disabled, these will be your choices, too, unless you are very rich). People can either continue to live at home and rely on whatever care hours that council care departments can spare, or they can consider living in carehomes – and that’s assuming there are carehome places available, which I absolutely would not assume.
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