Members of the disability arts movement came together with anti-cuts activists this week to look for a way to boost the fight to save the Independent Living Fund (ILF) from closure.
Writer-performers Penny Pepper and Sophie Partridge were at the huge new Shape Arts pop-up gallery in central London to describe what the closure of the fund would mean for them and other ILF-users.
Surrounded by striking pieces of disability art, they presented a series of interviews filmed by campaigning journalist Kate Belgrave, in which they discuss the importance of the fund in their lives, and what it would mean to them if it closed.
The coalition has said it will close ILF in April 2015, with responsibility for supporting users of the fund – and £300 million of non-ring-fenced funding – then passed to cash-strapped local authorities.
ILF acts as a top-up to social care provided by local authorities, and ensures that about 19,000 disabled people with the highest support needs can live independently in the community instead of in residential homes.
Pepper told the event, which was supported by Inclusion London, Shape Arts and Disabled People against Cuts (DPAC): “Without a PA, I don’t get out of bed. Without a PA I don’t create work. Multiply that by everyone’s lives and that is what we are facing.”
Partridge says in Belgrave’s films, recorded in January and June this year: “If you give us decent resources, we will add to the economy. We will play our part, but we have to have adequate resources.”
She describes how her personal assistants (PAs) do “everything physically that I can’t do for myself… 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 I need them with me to do all those things.”
Partridge, who performed in the opening ceremony of last year’s Paralympic Games, says it is “too scary to contemplate” the thought of being forced into residential care, and adds: “One way or another we have to ensure that that doesn’t happen. We can’t go back 30-odd years.”
She tells Belgrave: “Homes don’t provide that level of care. That’s why we have the ILF, because our needs are high.”
Pepper tells Belgrave in her films, also recorded in January and June, that many ILF-users believe they will be faced with the choice of “neglect at home or residential care abuse. A lot of us are saying ‘neglect’”.
She adds: “The bizarre idea that you can eat sandwiches and lie in bed and use incontinence pads is coming our way.”
ILF pays “just under half” of the funding necessary to provide her with the “24/7” care and support she has been assessed as needing.
She says: “I would not be able to work without that funding. This is what is terrifying to me.”
Pepper says most ILF-users employ between two and four personal assistants. “That’s a lot of people who are going to lose their jobs.”
She adds: “I will take Islington council [her local authority] to court if I am forced into a residential home.”
Tracey Lazard, chief executive of Inclusion London, told the event: “ILF has transformed the lives of a whole generation of disabled people with the highest support needs.
“99 per cent of people out there don’t know about ILF. It is through this campaign that we are changing that.”
Ellen Clifford, a member of DPAC’s steering group, said: “We know that younger disabled people coming through are not having the same opportunities [because ILF has been closed to new members].
“They are not even having the opportunities of getting out of the house, let alone having a job.”
She told the audience that DPAC and other disabled people’s organisation such as Inclusion London, the Alliance for Inclusive Education and Norfolk Coalition of Disabled People were organising a week of campaigning action – Freedom Drive 2013 – to take place across the country in the first week of September.
The week will focus on a new manifesto of demands around disability equality that will be used to lobby politicians in the run-up to the next election.
Lazard said afterwards that she hoped the disability arts world would play a key part in the campaign to save ILF.
She said: “I think having creative artists on board is a really powerful way of communicating messages and stories and I think it will engage a lot more disabled people and the public generally in this issue.”
A judge dismissed a judicial review in April of both the government’s decision late last year to close the fund and an earlier consultation on its plans.
But the five claimants – all ILF-users – have now secured the right to appeal the judge’s decision.
Papers handed to the court by the Department for Work and Pensions (DWP) as part of the case suggested the coalition would not provide enough funding for anything more than a “safety net” for former ILF-users, once it closed.
Many ILF-users had assumed that the £300 million in funding would continue to be handed to councils by the government in the years after 2016.
But the DWP papers suggest that this funding might last for just one year, 2015-16.
26 June 2013
UN debate will be reminder of true inclusive education