How do you spend yours?

There's a striking slideshow on the Society Guardian website in which a number of disabled people explain how they spend their DLA.

But, for me, the most striking bit of all is how many of the people photographed need to spend their DLA on essentials. Mahri says she needs to spend her DLA on toiletries and deodorant, Johnny says he spends his on clothing, food, toiletries and hair cuts. Kofi says he spends his DLA on his shopping, Lorraine spends hers on clothes and Rubina says she worries about how she'll afford clothes without it. Tony says he needs his DLA to buy food.

DLA is supposed to be for the extra costs associated with being disabled and is not classed as "income". Your Incapacity Benefit or ESA or JSA or wages if you work should be enough for you to pay for life's essentials leaving you to spend your DLA on the costs you have that a non-disabled person doesn't incur.

That disabled people are living on so little that they need to spend their DLA on the basics is scandalous. Or it should be.

Of course, sometimes disabled people need to spend more on the basics. One example is people who need to buy ready meals and takeaway instead of ingredients to prepare our own food, because we can't prepare our own food. One friend of mine who has what she describes as a "freestyle" walking technique spends a fortune on shoes because she wears them out so quickly; another "basic" that's more expensive for us. So using your DLA to pay the difference between what a non-disabled person would spend and what you need to spend is absolutely logical. But we shouldn't be so impoverished that we can't meet normal expenses at all without our DLA.

Research by the Joseph Rowntree Foundation found that in 2010 a single person needed £14,400 a year to reach a minimum standard of living. This equates to £277 a week. That’s just your average single person, not a disabled person who needs to fund the extra costs of being disabled.

If you disregard my DLA (because it's supposed to only cover the extra costs of being disabled and not everyday things) but include my housing benefit (which I don't see a penny of because it gets transferred straight from the HB department at the council into the council's rent collection department) then my income falls short of that £277 by £67.

You may think "well, she gets more than she'd get if she was on Job Seekers Allowance." But you have to remember that JSA is intended to only be a short term measure until you find a job (and I agree it's a paltry amount). My incapacitation has lasted 4 years so far and there's no end in sight. I actually have to live my life in the long term with monies falling short of the minimum income needed. There's no "we'll just pay you a poxy amount until a job comes up."

So it's not really any wonder disabled people end up using their DLA to pay for food and clothes, because if we're living on benefits we don't have enough money to actually live. And the government want to cut it back even further.

The Cost of Care - (Riven and Celyn Vincent case)

Celyn Vincent is a six year old girl with quadriplegic cerebral palsy and epilepsy.  She requires round the clock care from her mother, Riven.  Six hours of respite care is provided per week by social services.  Yesterday, Riven Vincent asked for Celyn to be taken into care as her request for additional respite had been declined and she felt unable to cope.  As yet, Celyn has not been taken into care, discussions are still on going as to the best way forward.

Riven Vincent is a user of Mumsnet and had David Cameron to tea pre election.  During this visit he assured her that more would be done to support families with disabled children.  A promise he is now being accused of breaking.

The statement released by Ms Vincent can be viewed here.

Carers are estimated to save the government in the region of £80 Billion every single year.  Riven Vincent has estimated that the cost of caring for Celyn in residential care would be between £2000 and £3000 a week.  The cost of a respite carer for Celyn is approximately £15 per hour according to Ms Vincent.  It is likely that Ms Vincent is in receipt of Carers Allowance at a rate of £53 a week.  Financially the provision of additional respite is obviously more cost effective.  It will also have many other benefits for Celyn and her family which can't be measured.  Time as a family, the ability to make memories.  For Celyn's brothers and sisters to spend time with their mum.  And for Ms Vincent to have time to rest and recover.

The fact that there is now a lot of attention on the issue of support for carers and the valuable work they do is great.  However this isn't a one time only thing.  Nor is it new.  For many years now families have been expected to care for their disabled children (even when they become disabled adults) with little or no support for years.  The planned cuts to disability benefits and services are likely to make this much worse meaning even more carers find themselves in this situation.

Personally I was refused all support when I left university as I was living with my parents (in a property they had moved to whilst I was at uni and which wasn't adapted) and we "could cope".  The fact my Mum was working full time and also caring for my elderly Nanny (and my Dad had just had spinal surgery) and saying she couldn't cope was irrelevant. We were told we simply needed to "pull together as a family."  This situation was only resolved because my parents refused to have me in the house and I was made homeless.  That's a very distressing and painful procedure.

I know of other disabled people who have had to go down that route.  Of a 40 year old who was given a suitable flat to live in but couldn't move from his parents house as no care was available.  And of parents of now adult disabled children who have had to accept there child is never going to leave home and they'll have to keep trying to cope as best they can.  Twitter is full of similar stories today.

The focus on care provision needs to move from the cost of it financially.  It needs to look at the bigger picture.  The question shouldn't be "can we afford to provide X service" but "can we afford not to?"

The fact that Celyn Vincent's family have found themselves in this situation has been described as "shameful".  The fact that hundreds and thousands of carers and disabled people are in the same situation is even more shocking.  I hope that Riven Vincent's brave decision to go public gets results for her and she can keep Celyn at home.  But mostly that this brings the issue into the public eye more and that reforms are made to provide much needed support and independence for all disabled people and their carers.

Destination Unknown

The charities Scope and The Barrow Cadbury Trust commissioned some research by the think tank Demos into the effects of welfare cuts on disabled people, which has been released today.

The Government’s proposed welfare reforms will see 3.5 million disabled people lose over £9.2 billion of critical support by 2015 pushing them further into poverty and closer to the fringes of society. Plans to move disabled people onto Job Seekers Allowance will account for half (£4.87 billion) of these losses.

The report, Destination Unknown, also questions Government claims that the proposals will result in more disabled people moving into work, arguing that, in fact, they are likely to result in more disabled people ending up trapped in long-term unemployment and a low pay no pay cycle – ultimately costing the tax-payer far more.

From http://www.scope.org.uk/news/disabled-people-hit-by-welfare-cuts

A synopsis of the report is available on Scope's website while a pdf of the full 164 page document is available via Demos.