Can you imagine it?

Yesterday I posted about the spartacus report and the government welfare reform bill and what you can do about it. I tweeted lots, watched the post views triple, emailed my MP, signed and shared the epetition, was featured by Mumsnetbloggers, had the article show up in a Netmums series but failed, really, to make the impact I was going for.

There was no groundswell of support from mainstream parenting bloggers. No lightbulb moment of realisation that this is a bad thing that we *all* need to take a stand against.

And gradually, I realised why. The ppl joining in with the blogging, the commenting and the tweeting were mainly ppl with experience and understanding of disability issues. I had jumped in too deep and not explained the starting point of the problem. So here I am, starting again.

DLA or Disability living allowance is a non means tested, in work benefit awarded to ppl to assist with the higher cost of living due to their illness or disability. It has two parts, a mobility and a care component, and the care comes in three tiers. For a few ppl it is awarded for life, for many it is subject to frequent reassessment, and can be withdrawn at any point, causing ppl to have to go through a lengthy and unpleasant appeals process.

For many parents with disabled children it is a lifeline. They use it to pay for therapies and equipment that they can’t get from the NHS, for the aids that their children need to have a reasonable life, for, well, practically everything. It is not a benefit that is given out easily – the adult claim form pdf is 55 pages long. And once you’ve filled that out there could well be medical assessments as well.

Does this sound like a benefit that ppl apply for on the off chance? No, it doesn’t. And in fact, the often quoted rate of fraud for it is only 0.5%

Despite this, the government has decided the DLA budget needs to be cut by 20%. They opened a consultation on the reforms – that didn’t run for as long as their own code of conduct says it needs to run for, and then they put the legislation before parliament two days before the consultation ended. Meaning that the responses from many ppl were obviously not taken into account.

At this point, ppl with disabilities swung into action. Gathering themselves via social media they networked, sent in Freedom of Information requests, obtained the responses to the consultation and produced their own report on the whole debacle. This is the spartacus report I’ve been blogging and tweeting about.

Disabled ppl agree that DLA and the system around it needs reform. They don’t agree that it needs wholesale replacement with a completely new benefit, that doesn’t have all the tiers that current DLA has, that has reassessment at the heart of it, that looks disturbingly like a way to save money at the expense of the most vulnerable members of our society.

And the thing to remember about disability is that it can happen to any of us, at any time. So while you could be sat there thinking that none of this applies to you, tomorrow, it could.

Can you imagine it?


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Comments

15 responses to “Can you imagine it?”

  1. Thank you Jax for breaking it down! As an American I have trouble understanding the benefits system on a good day 🙂

    1. I don’t think that’s anything to do with being an American tbh, it’s beyond convoluted, and I suspect most ppl don’t know anything about it until it is relevant to them. Glad that it helped though.

  2. I’ve been wanting to support the #spartacusreport campaign, but ironically it’s my own fight for Incapacity that stops me.
    I lost my Incapacity in November 2010 suddenly. It would be a full year (without any form of suport) before my case was heard. And if my husband had not been here I couldn’t have appealed at all. He prepared everything, even looking at the forms gave me an anxiety attack. For 12 months I just had to pretend it wasn’t happening. Finally in November 2011 I had my court interrogation, where I was repeatedly questioned over my ability to preform certain action…actions I don’t perform or have adapted to fit into my condition. I was lucky, I won…for now.
    This was on the old system where you need something like 14-16 points to qualify on Incapacity and I estimate I had around 40 points. On the new ESA I’d hopefully qualify for 6 points (you still need 14-16 points to qualify), so I know I’ll be losing my benefits in the near future. I don’t have the physical resources to fight again. These are the changes they are made without much fuss – the fact that councils and charities are against the new changes to DLA should be setting alarm bells off.
    I can’t blog about this elegantly because the idea of trying to fight the government again makes my heart race and hands shake. I know there are those out there in worse health than I, that are doing so much more, but the anxiety I feel whenever I try to speak out steals my words.
    I’m one of the lucky ones…those on DLA need it even more.

    1. I spent this morning tweeting my way through the spartacus report. And it felt like I was shouting into an abyss – by lunch time I was hunched in a corner, desperately in need of a break. And the only thing that’s up with me atm is tiredness due to pregnancy. I can’t imagine how this fight is draining the ppl these reforms are aimed at – I saw the latest update on Suey2y’s blog where she’s in hospital and BendyGirl is medicated and in bed.
      I wonder if the govt is proud of its actions so far. 🙁

  3. Hi Jax, Thanks for the post. I think there are a lot of people out there who know full well what this is about….. there are also many who have no clue. In the former group there are those who are effected by it and they generally seem to be tweeting and blogging about it, and those who are not directly effected – I’d count myself in this category – I’m tweeting about it and RTing anything interesting, but though I’m blogging a bit about the changes this government is making (and my opposition to them) the DLA is not my area of expertise. I share the outrage at what the government is trying to do, but I do not know the ins and outs of how it effects individuals since I don’t receive it and I don’t know anyone who does. The government has done the same thing with consultation processes with respect to the solar feed in tariff and they’ve been successfully taken to court over it though, so there is hope from both a legal standpoint and a practical one that the changes may not go through.
    The other thing is that many people talk about their blogs as “sunny places” or similar and seem to baulk against introducing a political element – even in satire – maybe parents just have other preoccupations or maybe they are keener to pep themselves up with lighter writing…. I don’t know….. but there are very few parenting blogs tackling the heavier issues.
    I’m doing what I can to make people aware of the Spartacus Report …. I’ll be tweeting a link to this post for one thing. It’s a great explanation of the issues.
    😉 Fiona

    1. Hi Fiona, thanks for the thoughtful and thought provoking comment. I’ve been surprised at how few ppl seem to know families in receipt of DLA – I know several, and I know how difficult it is to get and how much it helps them. I don’t know many adults getting it, but I’ve put a couple of links in to blogs of ppl talking about it. There was a post I saw last week about how difficult it is to claim, but I can’t find that one now.
      I’m hoping that the government will be pulled up sometime very soon on this bill, but it’s a long way through the process already and I’m worried.

  4. Could you do a blog about the Motability aspect for the numbskulls out there that think we get loads of dosh and a free car to boot as well?
    I get so irritated by people thinking we have a free car, my husband has severe Rheumatoid Arthritis, that has put him in a wheelchair and means that we need a car with certain adaptations for him to be able to drive. We paid £1800 up front for the adaptations and still pay £51.40 a WEEK for the car, its not free. If we didn’t have a Motability car we would have that £50.40 a week (plus the deposit) in our bank to do with what we wanted, but my husband preferred to have the security of a leased new car with repairs etc taken car of by someone else.

    1. Hi Julie – motability isn’t something I know much about – but I think you’ve covered it pretty well there. I can understand wanting the security of a leased car, but it’s not a cheap option.

  5. Thank you for linking to my post.
    I wanted to write a post just describing what its like living with a disability, and how DLA helps us.
    No one chooses to be disabled. And it does raise your costs of living. I think the government are totally barking up the wrong tree with reform. Yes benefits need looking at, there does need to be a restructure, but they have chosen an easy target.
    It’s up to all of us to fight, to raise awareness, and above all, to talk about disability and bring it into the light. Disability is not a four letter word.

    1. It’s a great post – and such an eye opener. Thanks for stopping by to comment.

  6. We have a problem in this country (and probably all over the world) so far as disability is concerned. Far too many people treat disability as being contagious. They think if they talk about it, it will happen to them. They assume people with a disability aren’t intelligent, don’t have street cred, are too needy, and being their friend would be a massive pain in the arse. I’ve lost such a lot of friends because I have a disabled daughter.
    I have found, time and time again, that the only people who tend to comment on posts about disabilities and conditions such as autism and those concerned with the spectrum, are people who have experience in this field. Their attitude; If you don’t have anyone in your family with such a condition, why bother to learn about it. What these people don’t realise is that autism and related conditions can affect anyone. Absolutely anyone.
    Just like all the other people who choose not to listen, read or understand, I knew nothing about autism until Amy was diagnosed. Since then (9 years ago) I have attended workshops, courses, become a member of various websites, taken part in fundraising for NAS, campaigned, signed petitions, got my daughter into a wonderful special school, become a carer and make a substantial effort to understand disability as a whole.
    People will always be ignorant. It is our job to educate them otherwise. Raising awareness will always go on, but unless something drastic is done like, for example, a television advert played during prime-time viewing, famous celebrities getting heavily involved, perhaps footballers making a stand, people who our society look up to etc, then the raising of awareness is down to us, the people who have experienced disabilities first hand. It’s one of the hardest parts of having a disabled child. We want to shout from the roof tops that ANYONE can have a disability and therefore need to claim DLA, that ANYONE can be diagnosed with autism and therefore will, at some point, need to claim DLA, that ANYONE can suddenly find themselves having to care full time for a disabled person. We all want action. We all know that something needs to be done to help disabled people. I get massively irritated by people with “perfect” children who shy away from the kids with conditions such as autism. I went through it often when Amy was younger and attended mainstream education. People disgusted me; friends I thought I was close to made me feel dirty, beneath them. They made Amy question why their child hadn’t invited her to their party and why she was the only one who didn’t get a Christmas card. Imagine how that makes a child feel.
    With all the issues surrounding DLA right now, it is good to see so much support on media networking sites, but the majority of that support is coming from people associated in some way with disabilities. Until others sit up and realise that they could wake up tomorrow and find themselves in the same situation, I fear our country will continue in its decline to help the people that need it most. And let’s face it; how many people in government or indeed the House of Commons, have a disability, let alone autism?
    CJ

  7. Dear Jax
    Thanks so much for linking up to the BritMums Special Needs roundup and a special thank you to you for being integral in raising awareness of this issue in the “mummy blogging” world.
    I agree with Kathryn’s thought about disability being seen as contagious and Fiona’s point on blogs being “sunny places” is pertinent.
    I also think there is another reason “neurotypical” people are apprehensive to get involved is the fear of saying the wrong thing. There are some forums dedicated to the “oneness” of being a parent of a child with special/additional needs. I tend to stay away to be honest. People are scared enough of what the hell to say to us, and if we start listing things we hate to hear, I personally think it is going to scare them off and ostracize us even more. I believe as with racism and sexism, the fear of saying the wrong thing is a barrier to getting involved.
    Did I include enough “air quotes” in that comment???

    1. Thanks for stopping by to comment. I think this is am important issue, and it’s shown me that we’ve got a long way to go on really integrating the disabled into society. I hadn’t realised how difficult it would be to get ppl involved, but I’m hopeful that if we keep chipping away at it we’ll get there.

  8. Hi all and wow!! Amazing, ALL OF YOU,THANK.YOU! With the people on here with such down to earth and cogent but incisive understanding. All of us who care about right and wrong must never give up. We must get more and more discussion and opinions and expess them and alow and educate in debate with those who dont understand. If we do and grow the knowledge and as each one joins in and we all embrace our friends and their friends and welcome them all and help them become part of the network of understanding and so support. This is what changed opinion about racism and can work for vulnerableism. (Has anyone got a better all covering word for it).
    TOGETHER WE WILL NEVER GIVE UP!
    Please never ever vive up
    tm

  9. Opps sorry about typos. Memo to self stop writing in the bath. Lol!

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