Spartacus Stories

Here is a collection of Stories written by many different disabled people about the impact that DLA has on their lives. It also includes stories of fear about the proposed changes to personal independence payment.

Admin: benefitscroungingscum, Lucia and Lucy
to add your story email us at spartacusstories @ g mail . com (without the spaces) (your posts are there, just being scheduled throughout the day) (can you add how you want your 'name' to appear ta)

Monday, 16 January 2012

Sticking Head Into Sand Is Not An Option #spartacusstories #spartacusreport

This entry is in regard to all the cuts which are happening with regard to the disabled as per the blogswarm One Month Before Heartbreak. If you're not disabled and therefore think this doesn't apply to you, I ask you to read it anyway. It won't be a comfortable read and it's not supposed to be. It may shock you. It may anger you. If it does? Good, then maybe it might inspire you to do something as neither I, my son, nor anyone like me can fight this battle alone, and we need your help. Please keep in mind that you are not just fighting for a stranger, but for your own potential future. As BendyGirl stated recently in her article in the Guardian: "It might seem too dull or difficult to think about but, remember, we disabled people are the same as you, it's just that we've already experienced our life-altering situation and you are yet to do so."

That's not a very comfortable thought, is it? It's not supposed to be. None of this is "comfortable" but it is also inevitable. And therefore ignoring the possibility and just pouring another cup of tea isn't an option for many people, and chances are you have friends or family who are in just this particular situation or will be soon, without any warning.

The cuts which are coming down to the disabled are appalling and devastating; most of them haven't even been announced to the public but we've been finding out about them through various charities and our own hard work gleaning through reports.

  • The cut of DLA for 25% of people currently claiming (this number up from the 20% which was quoted late last year),
  • the abolition of the Independent Living Fund (people now will go into homes instead which is even more expensive)
  • the removal of DLA mobility for any disabled person in a care home (stranding people in their care homes)
  • the abolishing of autistic children sent to private schools for autism via council funding (however the axing of funding to actually educate people how to deal with autism has also been put forward)
  • the regular review of all disabled cases whether one's condition will change or not (why review someone who has MS or cerebral palsy to see if their condition has miraculously become better?)
  • the abolition of free bus and taxi passes (transport to work? Nope, gone)
  • the cuts to council funds for home care plans (so help to live at home? gone)
  • the removal of funding through Access to Work to small businesses, self employed disabled people, and middle companies (which previously allowed the disabled to work in the first place)
  • the cuts to housing benefit which will place rent at only 20% below retail (and due to this letting agencies now no longer rent to anyone claiming housing benefit...yes, that's illegal, but they're doing it)
  • the end to secured council housing so you have to move within 2 years (move WHERE? that portion of the question hasn't been answered yet)
These are just the cuts we know about...however there are actually many more, quite a few which have to do to cuts with ESA and council funding which do not fall directly under the label of disabled funding but will certainly have a knock on effect. For example, legal aid funding which would help protest the discrimination of being on housing benefit and renting to private landlords? Gone. Likewise for attending appeals for DLA or benefits wrongly denied. Gone. Anyone under the age of 35 to be required to live in a bedsit instead of their own apartment if they are on benefits, disabled or not (and I'd say it's a safe bet many disabled people would not be comfortable with room-mates, let alone whether those room-mates would take advantaged of a disabled person; and how the hell is that going to be accessible?). The list goes on, and on, and on.

I'm stunned; stunned that this can be happening, much like many other people are who weren't even aware of any of these cuts.

But I think what stuns me more is the sheer complacency of the British public which has yet to raise any serious outcry to these cuts, even the disabled themselves.

I've been seeing a lot of denial - maybe this is an English thing to sit back and say "Oh, they'll never do that, it will sort itself out, they can't possibly cut that, it's vital!" It's as if people refuse to believe what is already being discussed in Parliament as happening until it's too late to get angry. And then of course there's the people who aren't disabled and just plain don't think it matters to them. "Taxpayers are getting hit badly too, you know" is a common statement, but as I and others have said before, many disabled people are or have been taxpayers themselves. Right up to the day of the fatal accident, or the biopsy test which came back positive, or the numbness in their limbs became paralysis. And when we were making our contributions, believing that the money we were giving would help us out in the end, we realised suddenly that it wasn't there.

DLA is NOT a "benefit". It is funding provided from NI contributions to cover the costs of disability which falls through the cracks of the system. There is no way this numbers into the tens of thousands, either - as outlined by Sue from Diary of a Benefit Scrounger these payments for DLA are paltry. I get a grand total of £350 a month for my son's care, and that has to cover a load of things; bedding for his bedwetting, the supplements he takes for concentration, transportation to countless meetings as the bus is too stressful for him and exhausting for me. It pays the water and the heat bills as the heat needs to be higher in my home due to his penchant to run about naked and his need for frequent bathing due to accidents, as well as for the best food I can buy for him as he eats so restrictively and I have to be sure his diet is balanced.

If that sounds like a lot, I've actually got it easy - other people with children who are unable to walk or move independently have to somehow fund bed and bath hoists, wheelchair accessible vehicles (which even through Motability require a massive premium), special clothing for tubal feeds, toileting supplies, petrol costs, eating aids and if one is lucky respite and cleaning help. It's a massive expense and believe it or not, NHS does NOT fund any of these things. That's what DLA is supposed to be when it's removed, what's going to happen?

Well, as Ali has already posted in her blog, for many people there is only one final solution. I wish I could say her entry was an isolated incident, but it isn't. The sheer number of blogs and statements I have seen recently on forums for disabled people who are talking about suicide as the only solution is horrifying. I have seen the outcry and demonisation of parents who took their lives and the lives of their autistic children, about what horrible people they were and why didn't they just go get help, etc.,etc. The truth of the matter is the help is not there. Believe me, I know. And I also had my dark days, and one day in particular last summer in which I walked out of my house and didn't come back for nine hours. I gave up entirely and had every intention of just disappearing and leaving my son to whomever happened to call the alarm when I wasn't there in the afternoon. You would have thought social services and mental health and several other groups would have rushed in...but they didn't. I was released from hospital ( one even bothered to call a taxi or get me someone to make sure I got home and didn't just disappear again), a note was put in my file that I was "mentally unstable" - and therefore they could just ignore any pleas I made as melodramatic - and that was that. Nothing changed. Nothing at all.

I have had to fight to try and get any assistance at all, and to be quite honest, it wasn't worth the battle. Two years later, and my son is still going to the same completely ineffectual school who is still completely incapable of dealing with his behaviour and rages. Almost a year later, my pleas to social services have fallen of deaf ears and I have been turned down twice for care plans or respite even though I am now completely housebound and trapped indoors. I am on my second DLA application, always having to address issues as either affecting my son or myself as no one seems to want to listen about how everything is affecting us as a family.

I have been applauded for working - "Well you must be feeling better then!" as my son's social worker told me yesterday. I have been assessed and being perfectly capable of caring for myself and my son because I can garden even though my laundry and dishes were piled up. This is not because I am cured, but because I have little choice. If I don't work, I don't get tax credits. If I don't get tax credits I lose my house, and if I lose that, there goes my way of living. I'll be forced onto a council estate and placed under scrutiny for every move I make to try and force me into a dead-end part time job just to make the numbers balance out. If I can't keep the job (and of course with my energy levels there's no chance I could) I'd lose the council house and benefits.

That isn't the future I foresaw for myself ten years ago. I don't think anyone would have done. But here it is, and therefore I am fighting for what few scraps I have to keep doing what I'm doing.

So where do you come in? Well, if you've made it this far, then you've done the first part; you're actually listening. Now comes the uncomfortable part - picture yourself right where I am, and understand it is not anywhere near as remote a possibility as you think. One night the police could knock at the door with bad news about your son, one day the cough you've had which didn't go away could turn out to be a lot more than just a cough. And of course, like it or not, we are all going to get old, and the older we get, the more susceptible to illness. Living longer does not necessarily mean living well, merely a death considerably prolonged. In other words these cuts apply to all of us; at some point they will apply to you whether you need it yet or not.

You're no different from us, nor we from's just we are the ones who reached this point first. Your time is coming, so prepare for it.
Originally posted here  

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

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