The closure of the Independent Living Fund (ILF) appears to be in chaos this week, with many ILF-users yet to be told how much support they will be entitled to, just weeks before the fund shuts for good.
Disability News Service (DNS) has spoken to 14 ILF-recipients, in an effort to build a picture of how local authorities across England are dealing with the closure and the transition to a system in which care will be solely funded by local authorities.
ILF is a government-resourced trust which helps about 16,500 people with the highest support needs to live independently, but the coalition government decided that it should close on 30 June, with non-ring-fenced funding transferred to councils and devolved governments in Wales and Scotland.
English local authorities will receive this transition funding for one year from the Department for Work and Pensions (DWP), but do not have to spend that money on their former ILF-users, or even on social care.
The picture built up by DNS is one in which a small minority of local authorities appear to have planned carefully for transition by working alongside local disabled people’s organisations.
But many ILF-users in other areas – which appear to be in the majority – are saying that their councils have not even told them yet how many hours of support they can expect once the fund closes.
The Department of Health (DH), which is responsible for adult social care in England, has refused to answer any questions about these concerns.
DH has made it clear that DWP is dealing with all queries on ILF and “any of the subsequent ramifications”, and so is refusing to answer any questions about what steps it has taken to ensure people’s support from 1 July onwards. DWP has also refused to comment.
The Scottish government announced last year that it was setting up its own ILF, for both existing and new users in Scotland, using the UK government’s funding and an additional £5.5 million of its own money.
The Welsh government has opted to transfer the Westminster funding to its local authorities – with conditions attached – and will protect the budgets of existing ILF-users for the first nine months, with funding after that dependant on the UK government’s next spending round.
One leading activist and ILF-user, who has asked to remain anonymous, said she still had no idea about the size of her future care package, after being reassessed for her needs only this week.
She said: “The whole process is a mess. Three weeks to go before abolition and they still haven’t reassessed everyone.
“My fear is that next year, when the money transfer to local authorities from ILF has run out, that’s when the real cuts will bite.”
Gabriel Pepper, one of the ILF-users who lost a legal bid to force DWP to reverse its closure decision, said Waltham Forest council in London had yet to tell him what his post-closure care package would be.
An ILF-user from London, who asked to remain anonymous, has been told she will be reassessed before the end of June.
She currently receives about 30 hours of support a week, but fears that that will be cut drastically, and has no idea when she will be reassessed.
She said: “The whole thing is very, very stressful. I don’t have to worry about it right now, but it is still looming.
“The question is whether they are going to give me enough notice after the assessment to make sure I can meet my responsibilities as an employer – I have to give (pictured, at an ILF protest) seven weeks’ notice to my PA because she has worked for me for seven years.”
Mary Laver, who has played a key role in campaigning to save ILF, has been told by her council, North Tyneside, that it will fund her full hours, including those previously paid for by ILF, until her next review in January.
But she said: “I live every day in fear of what my care hours that govern my life will be. I am to be imprisoned in my own home for the crime of being disabled.
“I will try to enjoy my last few months of freedom, but that enjoyment will be marred as I get ever closer to my assessment.”
Another key campaigner, Jenny Hurst, said her London council, Greenwich, had only written to her in the last few weeks to confirm that it would continue to honour her ILF entitlement, but only until she was reassessed. It was unable to say when this assessment would take place.
Peter Ashcroft currently receives 80 hours of support a week, a mixture of ILF and council-funded care.
He has been told by his local authority, Liverpool city council, that he will be reassessed at some point, but has been given no guarantees about how many hours he will have after the assessment, or when it will take place.
In the meantime, although he has been told by the council that he will continue with the same amount of hours, he has not been given enough money in the package to continue to pay his PAs at their current rate, which averages out at £7.25 an hour across the seven-day week.
He said: “I have had ILF for 12 years and they are saying I have got to accept what they have offered.
“I don’t think it is right, the way we are treated. When I ask about my future package, all they keep saying to me is they will keep on looking into it, but that is no guarantee.
“When I was 18, I had to use agency staff and they would tell me to go to bed at 9pm, so I couldn’t go clubbing or do the other things that teenagers do.
“Now I live independently on my own and they are putting me in a worse situation than I have ever been in.
“I live for an active life, but now all I am thinking is that if they can do this, what is to stop them doing something else, like telling me to use an agency again, or cutting my hours even more.
“They are being nice to my face, but I am scared of what they might do behind my back.”
Another leading disabled activist, Anne Pridmore, who attended many of the protests against ILF closure, has been told her current package will be extended until October – after she complained about the way she was reassessed by her local authority – but she has been warned that her support is likely to drop sharply.
She said: “One girl has worked for me for 18 years, another for 14 years, and all the rest except for one have been with me for eight years.
“They don’t know if they will have a job after October. They have been extremely loyal. It’s frightening.
“In a way, I don’t blame the local authorities. It is the government I blame.
“What I fear is that the ones who keep shouting the loudest – like me – will persuade the council to keep their packages, but there are a lot who won’t do that.”
She has been told that one of her options is for an agency to take over provision of her care – taking away the choice and control over staff she has fought for – and she fears that she will also be left alone at night, and be forced to wear overnight incontinence pads, even though she is not incontinent.
She has said repeatedly during the campaign that she would rather take her own life than be forced into a residential home.
Another prominent campaigner against ILF closure is Brian Hilton, campaigns officer for Greater Manchester Coalition of Disabled People (GMCDP), who told DNS earlier this week: “Until a few days ago, I had not heard from my local authority [Trafford council] with regard to my care package in over a year.
“Following a phone call from my local authority a few days ago, I am now awaiting my care assessment, which is due to take place tomorrow.
“I have been informed that the outcome of that assessment will go to panel for a decision the following week.
“By my calculations, I should know the level of my care package a few days before the ILF closes.”
The next day, he contacted DNS to say that the assessment had been cancelled two hours before it was due to take place.
He said: “I now think 30 June will come and go, the ILF will close, and I still won’t know how or if my current level of support will continue.”
Hilton needs assistance with everything from getting in and out of bed via a hoist, using the toilet, bathing, dressing, preparing food, and most other everyday activities.
He said: “My fear is that with the loss of the ILF, local authorities will increasingly adopt a crude time-and-motion approach to support requirements and cut existing care packages accordingly.
“The Independent Living Fund gives me choice and control. It enables me to get up early when the sun is shining or have a lie in if I am unwell or been out the previous evening.
“It enables me to visit my elderly parents, keep clean, safe, nourished, and live within and be a part of my local community.
“Without the freedom that the ILF brings disabled people with the highest support needs, we cease to live independent lives, we will merely exist.
“That is a frightening prospect and sends out the clear message that the government simply considers disabled people a bad investment, and an unacceptable expense.”
He added: “Even if my local authority keep my care package at its current level for now, what happens after April 2016, as the transition money is only guaranteed until then?
“The government has made no announcement on whether the transition money would continue to be given to local authorities or not.”
Mark Williams, co-chair of Bristol Disability Equality Forum, has also been left in the dark about his support.
Although he has been told his 24/7 care package will continue until he has an assessment from Bristol city council, he has no idea when that assessment will take place.
He said: “I have very little faith in what is going to happen after 30 June. The council have promised that they will carry on paying the money, but I have not got any faith in them at all.
“It’s very worrying. The council has ring-fenced the money to its department of health and social care, but no-one knows where they are as individuals. There is no doubt that more cuts are coming.”
If he lost his 24/7 care, he said, it would have a drastic effect on his life. “It would mean that I would not be able to use the toilet when I want, and have a drink when I want.
“Also, it would curtail my working life, as I would not be able to attend or arrange meetings that I volunteer for, which would have an effect on other people who rely on me as well.”
The picture in the London borough of Islington, where there has been a strong activist lobby against ILF closure, is slightly more positive.
Islington council has agreed to fund people to the same level as the ILF when it closes, but only until June 2016. After that date, the picture is unclear.
Another local authority where the picture is brighter for ILF-users – at least in the medium term – is the London borough of Hammersmith and Fulham.
The council was lobbied strongly from late last year by a local grassroots disabled people’s organisation, Hammersmith and Fulham Coalition Against Cuts (HAFCAC).
As a result, the council has written to every ILF-user in the borough with a series of promises, including that it will protect their current package of support until the end of March 2016, and provide every one of them with the details of a council officer to contact if there are any problems during the transition.
Kevin Caulfield, HAFCAC’s chair and himself an ILF-user, said: “It has not been perfect, but at least the will is there, the understanding of what the anxieties are is there, and we feel we can approach them.
“We were concerned that people might become isolated or just bury their heads in the sand.
“That’s why we wanted to engage with them as a group rather than leave it to individual people having to take on different issues. A lot of people are not in a position to do that.
“I feel reasonably confident now. I know what they are going to do, I know what they have committed to do.
“Hopefully it will go through smoothly, and if it doesn’t I have the numbers of council officers to contact.”
He said the situation in many other areas was “ridiculous”, and added: “You can’t be talking to people in the middle of June. We should be embarrassing these other local authorities.”
Another ILF-user who has been prominent in fighting its closure is Stuart Bracking.
Newcastle council and his local NHS clinical commissioning group have agreed a “shared care” arrangement when the ILF closes, which will continue his 24/7 support package. Because his impairment is deteriorating, he could soon move to his care being funded completely by the NHS.
But he is pessimistic about the situation for other ILF-users, and believes that local authorities – thanks to the new Care Act – will eventually begin to apply policies that would mean they only provide up to the equivalent cost of a nursing home place.
He said: “While it may take two or three years in some areas for that point to be reached for severely disabled people like myself with 24/7 personal assistance, it will, unless an individual can establish their ‘contribution to society’ is such that a move into nursing care would be disproportionate and unreasonable.”
He believes that local authorities will put a “positive gloss” on the threat of institutionalisation, by arguing that disabled people can exercise their right to independent living in residential care.
Meanwhile, a new Disabled People Against Cuts (DPAC) petition calling on the government to halt the ILF closure has been signed by nearly 18,000 people in just two weeks.
The petition features a film including members of the cast of Coronation Street, such as wheelchair-user Cherylee Houston, ILF-users including Brian Hilton, and other disabled performers such as Lisa Hammond, Liz Carr – herself an ILF-user – Jack Carroll and Francesca Martinez.
Houston, who plays Izzy Armstrong in Coronation Street, and is the driving force behind the petition, said: “I had to speak up. I realised I have a voice, and I couldn’t stand by and let this happen to my community.
“I remember when I first became disabled I researched our history [and] the Independent Living Fund was the thing which allowed us to live in and contribute to the community.
“Without this, we are going back to where disabled people were ‘locked up’. It makes me want to weep. We’ve fought so hard for equality… how can anyone take away another human being’s independence?”
DPAC is organising a lobby of parliament on 24 June to make a final effort to persuade parliament to reverse the closure, and is asking all ILF-users and supporters to attend if they can.