BBC Ouch 22nd March 2009
Laurence is presently writing up a support plan which, using a new government disability scheme, aims to give disabled people a higher standard of living. Here he wonders what he can justify including.
I honestly cannot remember being so excited about making a list of things I want to get since I stopped believing in Santa Claus. For the past few weeks, my imagination has been working overtime coming up with a whole myriad of things that I could justify purchasing with an ‘individual budget’.
Individual budgets are a relatively new scheme in the UK, whereby you can get money from the state to pay for your own support. Unlike the older ‘direct payments‘ system, there are no hard and fast rules about how you can spend your cash. It all comes down to whether you can make a convincing case to your local authority in your support plan.
Indeed, I think it’s only a matter of time before some smartarse tries to justify paying for an escort service. I suppose the biggest barrier to pulling this off would be getting a receipt out of them at the end of the evening!
There’s still a culture in this country which says that people who get support at the taxpayers’ expense should not be allowed to enjoy themselves in any way, for fear of being splashed across the front page of the Daily Mail as a waste of public money. I suspect the majority of people in Britain would have no problem sending one of us off for a miserable time in a respite home for a couple of weeks, but would object to that same funding being used to pay for a holiday in Florida instead – even if the cost was less. As a nation, we need to radically rethink just what we mean by ‘social care’.
When Attendance Allowance was introduced in the early seventies, the Government of the time called it a “comprehensive universal benefit” to compensate disabled people for their additional costs of living. However, not so long ago the Joseph Rowntree Foundation estimated that levels of disability benefits fall approximately £200 or more short of the weekly amount required to ensure a minimum standard of living for a disabled person. Therefore my wife Adele and I want to be able to use our budgets to pay for some of these additional costs.
First of all we came up with all sorts of aids and equipment that would make our lives easier. For example, an electric curtain rail would mean we wouldn’t have to struggle to circumnavigate our bed every night to close the curtains. Also a remote control electric fire would make cosy nights in, a reality.
In addition, there are a whole load of costs associated with using personal assistants that were never recognised by the old direct payments system, but can now hopefully be met. If you need a PA when you go out then you can end up paying for two meals or two theatre tickets. If I’m working away from home need to stay overnight then my expenses are double, which tends to be very off-putting to potential employers.
Then we realised that writing our own support plan would finally mean that our support needs as disabled parents could be taken into account. Previously when we’d asked our social worker for support around parenting, we were told that our son Tom would have to be assessed separately by a social worker from the children’s team, and that this may result in him being placed on the ‘at risk register’! Writing our own plan will give us the opportunity to include things like support to take Tom to and from school and after-school care.
Before long we started to get a bit more ambitious. Adele is going to write private gym membership into our support, since regular visits to an accessible swimming pool would most certainly help her physical mobility. Nowadays, however, going to the gym has become a middle class pastime akin to a golf club, or even a gentlemen’s club. Where exactly do we draw the line between equal opportunities and social climbing?
One thing I definitely want to include is electric front doors, as at the moment I cannot unlock ours without assistance. Just being able to come and go from my own home by myself would make an enormous difference to my life.
Of course, it remains to be seen how much of our support plan my local authority will actually agree to!