ILF closure: ‘I want to chew off my own hand so I can escape’

Individual stories of disabled people who have been affected by the chaotic closure of the Independent Living Fund (ILF) are continuing to emerge.

The ILF closed on Tuesday this week (30 June), and was marked by a protest outside Downing Street, as well as continuing anger at the impact of the closure on the nearly 17, 000 disabled people with the highest support needs who received funding through the scheme.

The Department for Work and Pensions promised to transfer nine months’ worth of non-ring-fenced ILF funding to councils in England – through the Department for Communities and Local Government – and to devolved governments in Wales, Scotland and Northern Ireland.

But the transition process has been hit by reports of delays in reassessing former ILF-users and cuts to their individual care packages.

Councils in England have now taken full responsibility for funding the social care needs of former ILF-recipients, but they have yet to be told by the government exactly how much funding they will be given, or when it will be handed over.

And as the chaos continues, Disability News Service continues to receive further reports of ILF-users hit by the closure, and the chaotic transition process.

New examples have come from Ellen Clifford, campaigns worker for Inclusion London, who collated them on behalf of the #SaveILF campaign.

One female ILF-user told the campaign that she had been informed that her previous package of seven hours a day of ILF care and five of council care was going to be cut to just three hours a day in total.

She was told that she would have to use incontinence pads, which would help her to “be more independent” as she would no longer have to rely on other people to take her to the toilet.

If she is left in incontinence pads, she believes her “already very vulnerable skin will be put at even greater risk resulting in breakdown, pain, infections and sores”, while if she is left without the support she needs she will be at risk of “more falls, dislocations and hospitalisation”.

Without support, she will also be unable to take her emergency medication which she needs when she has the muscle spasms that paralyse her with pain.

She said: “If I am left without the care I need I will be housebound and even bedbound, making my depression, stress, anxiety and social exclusion unbearable.”

She said: “My assessment by the social worker was traumatic, embarrassing and dehumanising and being told my care recommendation is just three hours a day when I need someone with me 24 hours a day [she currently receives other unfunded hours from friends, neighbours and family, and on a voluntary basis by her paid personal assistants] has left me stricken and panicked and fearful about how I am supposed to manage.

“I feel like a bear in a trap and want to chew off my own hand so I can escape.”

She said the prospect of the cut to her package was “devastating, terrifying and soul destroying” and had left her “confused, disorientated and unsure of myself and struggling to think”.

She said: “I cannot stop crying and worrying and being overwhelmed by enormous levels of anxiety and stress and anger and I feel so bad for my carers too.

“They have been so dedicated to looking after and supporting me for so many, many years, putting in paid and unpaid hours to make sure I was safe and cared for at all times.”

She said her current package helps her to use her skills and experience in contributing to society, including serving as chair for three disability charities, and campaigning for disability rights, equality, inclusion, peace and the environment.

Another ILF-user spoke of their council care manager suddenly contacting them last month to arrange an “urgent” reassessment, even though the local authority had had three years to plan for the ILF closure.

Again, incontinence pads were suggested as a possible solution, even though they have no continence issues.

They said: “It wasn’t directly said but it felt like it was being put forward as the solution to cutting of hours, even overnight stays.

“There was never any effort to reassure me or to offer me advocacy of any sort. I have no idea what the outcome of the reassessment will be and now just have to wait.”

Another ILF-user, who works for their local council as a social worker, has just been reassessed, but a council panel has not yet agreed their support package.

They said: “They say they want more in depth information but they already have this.

“I work for my local authority as a social worker so find this extremely frustrating and upsetting. It feels like they are not listening and wanting to make cutbacks.”

Clifford said: “The majority of ILF recipients and their families have described communication from their local authorities about the ILF transfer process as poor and said they have no confidence at all in their local authorities’ ability to manage it.

“Unfortunately this has all fallen on local authorities struggling with a £1.1 billion social care shortfall at the same time as implementing the new [Care Act] legislation.

“As we are starting to see, the losers out of all this are disabled people, already reeling under the disproportionate impacts of the cuts.

“Our chances to live in the community and take part in ordinary life are being smashed apart.”

Picture: Disabled activists at a protest against the ILF closure outside Westminster Abbey in June 2014.