Penny Pepper ‘Will Take Council To Court’ If She Ever Has To Go Into Care Home

She is interviewed for today’s Guardian online along with writer Sophie Partridge.

Penny Pepper, 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 [in north London] 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. I employ four people on a rota at different times. Most people I know who receive the ILF employ from two to four people as carers. That’s a lot of people who are going to lose their jobs if the ILF closes. [The government plans to close the ILF and devolve it to aleady cash-strapped councils by 2015.]

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. The basic idea of having a separate pot of money like the ILF did give you choice and control. 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. The idea of choice is being narrowed and narrowed and narrowed. 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.”

Sophie Partridge, actor, writer and workshop artist “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 will contribute to your blessed, blinking “big society”. We will play our part – but we have to have adequate resources.’ 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.

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. I am a bit obsessed with going to the loo, but that’s a core, vital thing. Local authorities have never been keen on funding people’s night-time packages. I know one young disabled woman who has been told that although she’s not incontinent, she should use incontinence pads at night. Seriously. That’s also been said to me in the past.

The idea of going into a care home is just too scary to even contemplate. We have to ensure that does not happen. We  can’t go back 30-odd years. The irony, as well, is that even if they deported us all to some sort of home tomorrow, homes don’t provide the levels of care we need.”

Interviews by Kate Belgrave

View interviewee videos at katebelgrave.com