Last night I started looking at my plans for Christmas and the New Year, and it kept me up much later than I’d planned. I was working out whether I’m going to be able to afford to take my annual leave. It wasn’t whether I’ll be able to afford to go away on holiday, but whether my personal budget (the money I get from my local authority to meet the costs of my care) will be enough to cover the cost of a support worker when I’m not at work.
The short answer is that it won’t. Access To Work, which helps pay for the practical support disabled people need to get a job or stay in employment, funds my support worker for forty hours a week. When I’m not at work – if I’m sick or on leave – I can’t access this funding.
Since my ‘ticcing fits’ started two years ago I’ve needed constant support. Without someone with me I’m at serious risk of injuring myself, suffocating or being stuck in painful positions – unable to call for help. My reduced mobility means I can’t leave my flat at all without someone to help me. Conversely, when I have a support worker there’s very little I can’t do.
My personal budget covers my overnight care – eight hours a night – and twenty-two hours of daytime support a week. But even in a normal week when I’m working, I have to rely on my friends and family to provide free support for a further fifty hours. Week in, week out, I have to ask favours and negotiate with friends to ensure I’m safe.
The reality is I feel most independent when I’m at work because that’s where I get most support.
I’m fully aware that my support package is considered generous. My social worker has arranged for a one-off payment that I can claim to cover times when I’m sick or on leave. But this meets only a small part of my annual holiday entitlement. Even if I use this extra help in my two weeks off at Christmas I’ll have to find someone who can support me for 140 hours for free.
These arrangements are never far from my mind. I’m constantly juggling the schedules and the needs of my friends and family. I dread having to ask for yet another last-minute favour. I hate hearing my sister, who works a sixty-hour week as an NHS doctor, talk about me as her ‘other job’. There’ve been occasions when I’ve had to go to work with Leftwing Idiot because there’s no one else to be with me at home, and sometimes I’ve even been desperate enough to think of going and sitting in A&E until someone’s free to support me.
I’m telling you all this because I want you to get a sense of how crucial having enough support is. It’s the difference between being safe and being at risk, between enjoying time and enduring time, or between being independent and being dependent.
Social services will only ever cover the support I need to meet my basic needs – eating, washing and so on. But like everyone else I want my life to consist of more than just being alive.
Until 2010 there was a Government fund that recognised this and filled the gap between basic needs and an independent and equal life. It was called the Independent Living Fund and it helped meet the additional support costs of severely disabled people.
This Fund was closed to new applicants in 2010. I would’ve become eligible for it in 2011. Its permanent closure was announced in 2012.
But today, in 2013, three High Court judges unanimously ruled that the decision to close the Fund had been unlawful. This, they said, was because the Government had breached its equality duty by failing to assess properly what one of them described as the “very grave impact” of the closure on disabled people.
This is an amazing decision and one that’s the result of determined campaigning and sustained legal challenges. What it will mean for the future of the Fund remains to be seen and it seems unlikely that the Government will relax its systematic attack on services for disabled people as a result. But what it does do, as one of the lawyers involved in the case pointed out, is:
‘Send the clearest possible message that the considerations set out in the Equality Act about the need to consider advancing equality of opportunity for all disabled people has got be at the heart of everything that the Government does.’
She went on to make it clear that this legal duty doesn’t change in ‘times of austerity.’ I’m very interested in what happens next and I’ll keep you updated. Everyone who fought for this decision deserves our thanks and congratulations.
My quality of life should not be dependent on the sort of friends and family I have, but at the moment it is. I do not have equal access to a full life (though I might well have done had my tics got worse a year or two earlier) and the extent to which I’m able to live in my community is very largely dependent on the community of friends who make this possible. I’m extremely thankful for them, but even so I don’t always choose how I spend my time, I have to negotiate it.
More information on how to get involved in the campaign to save the ILF can be found here. We need everyone’s support to make sure that the Government knows, as comedian Liz Car puts it, ‘Giving disabled people the means to be partners, friends, daughters, sons, employers, employees, friends, cat lovers, sarcastic bastards and all that malarkey is a really rather good idea for everyone.’