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.
So. Confusion about life after 30 June reigns, as I say. With less than a month to go until the ILF closes, people are completely in the dark about the way things will play.
Today, I also spoke to Christine Stringer, who is 70. Her 50-year-old son Michael has learning difficulties, autism and challenging behaviour. He lives independently in his own home. His ILF money, which pays for more than half his care costs has made his independence possible. “It’s proven that it works,” Christine says. “We’re talking about a person who would ordinarily be confined to a treatment long-stay hospital. He’s lived successfully in his own home.”
Michael has a team of five personal assistants who provide his near-round-the-clock care support. Christine says Michael was assessed by his local council a couple of months ago – but she still has no idea if the council will agree to pay the hundreds of pounds a week that Michael will lose in care funding when the ILF ends. If the council doesn’t agree to pick up the extra cost: “it will be down to me to challenge [the council].” She doesn’t know how long that sort of challenge might last, or take to resolve. Christine says the ILF money must continue to be paid until someone reaches the proper decision.
The likely impact on Michael of the wrong decision – a funding cut – doesn’t really bear thinking about as far as Christine is concerned. “Because of my son’s autism and behaviours, he will only tolerate people into his home that he knows very well. I’ve managed to keep the same team for over ten years.” Christine says “that will all come crashing down,” if the council doesn’t come up with enough money to meet the existing team’s wages. “They will have to seek work elsewhere.” As for Christine: “I’m 70. I can’t provide Michael with a future myself. It is really stressful.”
Indeed. My inbox is filling up with emails from people who receive ILF and aren’t sure at all what is coming their way at the end of this month. It’s almost not worth asking the DWP half the time – I spoke to the department this morning, sent through questions and have heard nothing back. As usual. Perhaps the DWP would rather not admit that disabled people who need intensive support and round-the-clock carers are about to be left without those things. Sadly for the DWP and Iain Duncan Smith, this disaster will not be kept hidden.
I believe it important to consider regarding removal of ILF especially, issues of financial inequality and who and what are the main drivers of ‘welfare reform’.
Perhaps more pernicious than lobbyists and funders of political parties, is the influence of dodgy American health insurance company Unum as an adviser on ‘welfare reform’ to successive UK governments since 1994!.
On the matter of weath and income disparities, the late severely impaired and dependent Ivan Cameron’s parents were well-heeled, and Ivan even received help from a taxpayer-funded charity. Across the Atlantic in the privatised nation of the USA that gave birth to Unum and many other leading ‘health insurance companies’, one of President Obama’s ‘platform’ policies has been to reduce the impact of privatised ‘health insurance’ on people’s ‘health outcomes’, especially among disadvantaged black populations.
Yet there are also people over there who have not been disabled from birth who have become severely health-impaired and/or disabled after accruing seeds of financial independence as songwriters. Two particular examples I have in mind are the late Steve Goodman and Curtis Mayfield. Goodman underwent considerable chemotherapy for leukaemia/lukemia that would have been expensive, and yet I have read that he did without health insurance. And Mayfield rose from the ghetto to become an established singer-songwriter with considerable catalogue before an outdoor stage collapse left him paralysed from the neck down. That condition would have left someone in Mayfield’s position eligible for ILF to pay for 24 hour care if that was a legal entitlement. Songwriter and author Dick Weissman (2001: 20) in Song Writing: The Words, The Music, The Money, noted regarding Mayfield’s response to that tragic accident: “[Even in the remaining nine years of his life] he was able to record an album of his songs.”
Weissman’s tribute song for Mayfield’s rise from the ghetto and from the physical confines of later-life paralysis reads:
“Risin’ above what the world has chosen for you
Risin’ above any obstacle you see,
Risin’ above, any harm that’s meant for you,
Surrounded by love, you can rise above.”
There is a saying from the Book of Deuteronomy, “Therefore, choose life.” There is also the fundraising song hook, “We are the world” and a Social Model of Disability enshrined in the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
The Social Model of Disability infers that it is the world created by society that can help people rise above the polarising paralysis represented by the ‘living death’ sentence that ‘market ruled’ ‘welfare reforms’ holds in store for current ILF beneficiaries.
Let us choose and society fund inter-dependent living.
PS: For “Weissman’s tribute song …. reads” read, “The chorus of Weissman’s tribute song …. reads”
Kate, are you saying that severely disabled people are already using ILF to cover for costs which the councils won’t pay for? Also, what reasons have been given by the current administration to justify closure of ILF? Is it the alleged cost to the tax payers? Or do they want to “encourage” people to move into care homes?
Hi – yes essentially, ILF payments are used by a lot of ILF recipients as topups to council payments for care (some people who received ILF from the start received ILF only to pay for carers, but subsequently, people’s care packages have been paid for with a combination of council and ILF funding where people are ILF recipients). The closing of the ILF removes the ILF component of that funding. For some people, that ILF component is a lot of money – some hundreds of pounds a week and the greater portion of their care funding money (ie, they receive more in ILF than they do in council funding). Government justification for the closure is loose – the general argument was that social care is provided by local authorities and the ILF should be part of that system, rather than a standalone entity. My argument is that ILF and the independent living ethos ought to be extended out, not reduced and that at the very least, people who already receive ILF should not be expected to give it up. The big problem is, of course, that council care systems are already under intense pressure and that the chances of LAs being able to meet the care costs of a group of people with high support needs and high-costs care packages aren’t very good, particularly in an ongoing way. ILF money is supposedly to be devolved to LAs, but the money will not be ringfenced by in many cases and there is no guarantee that it will continue to be devolved for long. The best-case scenarios I’ve heard so far is that some councils might meet the costs of some of these care packages for a year. After that – it’s anyone’s guess. And of course – some people aren’t getting that year’s guarantee and some people don’t even know what will happen yet as councils haven’t reviewed their cases and/or haven’t said what sort of costs they can meet after 30 June. The stress this is causing people in unbelievable. It is extraordinary that people don’t know what will happen for them this close to the fund’s end.
On the matter of what is essentially the dilemma between
1. councils getting organisations/companies to tender for delivering services to vulnerable people on the basis of ‘lowest bidder wins’; and
2. service users having sufficient funds through ILF to pay for and administer their own care packages and having the rights and responsibilities that come with Kate’s point of extending the principle of customised care,
it strikes me that common sense and the support of kinship allies in the recruitment processes should back the latter.
Last week’s print edition of the Camden New Journal led with the headlines
Family’s shock as second care home worker is jailed for abuse
‘HOW COULD IT HAPPEN AGAIN’
i would argue in answer to that question part of the headline, that caring for vulnerable service users is undermined by privatisation of services and the kind of ‘managerialism that recruits managers who have not had a proper induction into the CORE VALUES of the personal social services.
That is also what Social Work Action Networ argue, along with the argument that the profit motive involved in privatisation and capitalism does no-one any real service. I gave up on any chance of my getting an income from such work after the council that funded the charity I worked for cut back on core funding so much that there was not sufficient funding for in-service training even when the in-service trainee had no disability/additional requirements of their own.
And the last I heard from a former colleague in that care charity that I resigned from, was that the council had told the organisation to re-tender on the basis of ‘lowest bidder wins’.
I wonder whether the ‘key decision makers’ involved in such moves ever stop to consider the mess they make of the lives of the vulnerable people affected, or consider that one definition of ‘abuse’ is allowing vulnerable people to fall foul of changes that put them at risk of harm?
Privatisation of care services and the pressures on staff is a crucial part of this. No doubt about that at all. People aren’t getting paid for travel time, the wages are bad and stories like the recent ones about the strike action taken by Doncaster careworkers and Barnet Your Choice careworkers tell you all you need to know about the priority that outsourcing gives to driving down wages to the detriment of services. The ILF gave people the chance to choose and pay their personal assistants for the sort of hours that might reasonably be considered a wage. That part of the equation could change quickly if people find they have less money to spend. A number of people I’ve spoken to over the years who receive ILF didn’t always get it and relied on council care services and funding. That very often means reduced hours, different workers from day to day (which is a particularly big issue for people like Christine’s son in this story, for whom familiarity is extremely important).
Re “different workers each day” the exact term “an army of care workers” has great currency.
So does ILF mean that disabled people get to chose which carers to hire? Whereas lack of ILF would mean councils get to chose whom to send off as carer to disabled people?
Someone also needs to keep an eye on disabled peoples’ ‘contribution’ to their care packages. I don’t know how that worked for those under the ILF, but local authorities can exact a high contribution towards the care packages, and although there is a calculation made so that theoretically a disabled person is left with enough income to live on, in practice you can pay upwards of £3000 per annum. They also like to ‘privatize’ certain elements of your care package, meaning that you end up paying even more out of your dwindling benefits.
This is what happened to me, paying over £3000 per year and then paying privately for anything they removed from the care package. It’s been like this for 3 years now. I have a credit card debt of £3500 now and it specifically relates to my care charges. I couldn’t save any more, so when things like washers, cookers, beds etc needed replacing I had to do that on credit.
I have adjusted my spending however, and I’m not getting into any further debt at present, but my world has closed in: not seeing family regularly any more as it’s a £20 round trip; rarely socialising; not able to do some of the creative courses; rarely able to go into town; not being able to save for an emergency etc etc. It might not sound like much of a disaster – I do have a roof over my head and I’m hardly starving; I’m very grateful for this – but these charges have profoundly changed my life: my world has closed in; I became terribly depressed. Just because I’m disabled doesn’t mean that I shouldn’t have some kind of life.
Ironically, when I was working professionally, the WHOLE of my care package was provided free, but when I became unable to work, and obviously receiving less money, I suddenly became liable to pay! It doesn’t make sense!
I just hope that disabled people using the ILF don’t similarly get into debt. It takes some time to work out a life on a reduced income when you’re losing over £300 per month, and also time to come to terms with the loss of activities and friends.
Due to that, please look out for these people if you know them personally.
Re care charges, there is a Campaign Against Care Charges in Camden run by Winvisible (Women with visible and invisible disabilities). For further info, contact Winvisible.
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