The videos on this page are interviews made, by False Economy, with people who are directly affected by the government’s atrocious recent decision to close the Independent Living Fund (the ILF).
The ILF was set up as a standalone fund to pay for extra carer hours for people with severe disabilities. That additional funding made it possible for people to pay for enough care to continue to live independently in their homes, rather than in residential care. At the end of last year, the government made an extremely unpopular decision to close the fund and devolve it to local authorities. A recent attempt to challenge the closure was lost, but claimants plan to appeal.
In these videos and linked case studies, ILF recipients around the country explain how vital the fund is to them and what will happen if they are no longer able to pay for the high levels of care that they require.
In this video, Mary Laver, who lives in Newcastle, talks about the life that she leads with carer hours paid for by the Independent Living Fund. The ILF pays for about 46 of Mary’s carer hours a week. With that support, she does everything and a lot more: last year, for example, she raised money for the Royal British Legion by travelling from Lands End to John O’Groats in her electric wheelchair and went to London as a 2012 Olympic volunteer. Without that funding, things will change drastically:
Gabriel is 41. He began his working life as an archaeologist after completing a Phd. He has had three brain tumours and has sight, speech and mobility impairments. The ILF pays about two-thirds of his care costs. Waltham Forest council pays for the rest. His view on the importance of taking legal action to fight to save the ILF fund in court (he was in the group of ILF recipients that took the recent court action): “I don’t believe the Tory party will ever hang their heads in shame, because they don’t have shame.”
He also talks in the video about the effort that he’s had to make to convince MPs to sign early day motion 651 – an EDM which called for the government to “look at ways of expanding the Independent Living Fund to provide needs-based support to all adults in the UK who require it.”
Sophie is an actor, writer and workshop artist from Islington:
“My PAs [carers] do everything for me – everything physically that I can’t do for myself. It’s all aspects of personal care – like getting up, going to the loo, washing, dressing, cooking for me, cutting my food up, cleaning, laundry, driving me in my van. I still need the same levels of assistance whatever I’m doing, so if I’m working or round at a friend’s house, I need them with me to do all those things.
Fighting the cuts has been difficult. [In their arguments against benefit cuts], people do use this word “vulnerable” a hell of a lot. I actually wrote a letter to David Cameron – and I’m still waiting for a reply – in which I said: ‘It’s not my impairment which makes me vulnerable. It is your cuts. It is your policies. Give us decent resources and we will add to your economy. We can’t be cast as victims all the time. It’s difficult, because we do have to fight the good fight without appearing pathetic cripples. It’s hard to find the right balance.”
Penny Pepper is an Islington writer and journalist: “The reason I get the independent living fund (ILF) is that I’m judged to have a severe disability with severe levels of mobility impairment. I’m assessed as needing 24/7 care. The ILF pays for just under half of my care costs(and Islington council pays the rest. I need support to do most things of a physical and practical nature – from getting out of bed, using the bathroom, getting dressed and food preparation to moving from A to B, getting into my wheelchair and getting out of my wheelchair. I would not be able to work without that funding. This is what is terrifying to me. Council funding alone, for carers, would not be enough to retain my personal assistants.
There is this bizarre idea coming our way that you can eat sandwiches, lie in bed and use incontinence pads. If that happens, then that is, in effect, the end of my career. Now, we’re being forced backwards into having to go on about how pathetic we are as individuals – you know, with your poor legs and your this and your that. If the council ever tries to put me in a care home [because it cannot afford to fund independent living costs ] I will take it to court.”
Kevin lives in West London, works in Brixton and is training to be a barrister.
“For my care, I need two people during the day at some points during the day, so my care package totals 25 hours. It’s quite significant. It’s enabled me to stabilise my health and it’s improved quite a lot. I’ve been able to work during the last 15 years. I’ve been able to go to college. I’m training to be a barrister – things that I would have been able to do in my life if I wasn’t a disabed person, but certainly things that I couldn’t do without this support.
Hammersmith and Fuham council pay for about 60% of my care package and about 40% of the pacakge comes from the Independent Living Fund. For disabled people to be included as equal members of society, [the great thing about the ILF is that the assessment really is based on your needs and you don’t feel that someone has come in with a cash register next to them.”
There are more testimonies from people on the Disabled People Against Cuts site:
What the Closure of the Independent Living Fund means to disabled people – Mary’s story
What the Closure of the Independent Living Fund means to disabled people – Justine’s story
What the Closure of the Independent Living Fund means to disabled people – John, Paul and Evonne’s story
What the Closure of the Independent Living Fund means to disabled people –Roxy ’s story
What the Closure of the Independent Living Fund means to disabled people – Kathy’s story
What the Closure of ILF means to disabled people – Richard’s story
What the Closure of ILF means to disabled people – Penny’s story
What the Closure of ILF means to disabled people – Anthony and David’s story
What the Closure of ILF means to disabled people – Kevin’s story
Template letter to MPs to stop ILF Closure
What Local Authorities said about the Closure of ILF