I am writing this post in response to the Spartacus Report.
I make no secret that Littlest has medical needs. On the outside, he looks like your average three year old child. The reality is very different.
Since he was born at 28 weeks, and diagnosed with Chronic Lung Disease, our lives have never been normal. Having two children makes the issues with his health all the more obvious. Mini is never struck down with worse than a tummy bug, or a cough. If Mini becomes a bit ill, we give her a spoon of calpol and a blankie and she sleeps it off.
If Littlest gets ill, it means ambulances, panic, fits and worry. I constantly fight a losing battle to let him have a normal life. He has less than 50% attendance at nursery (since September 2011). The preferred percentage is 95%.
When he came home from SCBU, we were in a daze. Sure, we'd applied for family allowance, but that was it. Our home nurse D told us we should apply for Disability Living Allowance. She wrote a letter in support, detailing Littlest's illness, his constant need for hospital appointments, that unlike normal, that is to say healthy kids, if he was to slightly spit up milk after a feed (feeds which took over an hour due to him struggling to breathe with a bottle in his mouth), we'd have to change him, bath him, take all the sheets off his bed, the lot. This whether it was 1pm or 1am.
We applied, and we were awarded the higher rate care part of DLA. We had no idea that really, we were entitled to the mobility part due to his constant back and forth by bus to hospital. We were just happy with what we had.
It meant that we could make life a little, not a lot, easier- it paid for an increase in rent to pay for the extra bedroom we felt we needed. Unlike most siblings of 16 months difference in age, Littlest couldn't share a room with Mini as we would constantly disturb her sleep by checking on him, or when (not if- he wakes up every night without fail to this day) he would wake up screaming and/or coughing in his bed at night. You can't switch a light on, however dim the bulb without waking both kids up.
Cut to June this year, and Littlest's DLA was up for review. He hasn't got better, if anything he has got worse. We are still back and forth to different Doctors for a definitive diagnosis, next stop is Oxford.
I filled in his forms and sent them, detailing the daily struggles we have, how we were worried to send him to playschool, etc etc.
I heard back in mid June. His money was being stopped as they felt there was insufficient evidence to suggest Littlest was any different to a child his age.
How had they come to this conclusion? No doctor had seen him from their team. The GP had sent his records. So, you know me guys, I phoned, and demanded an explanation.
They had asked a Consultant to give them a run down. Problem was, the consultant Littlest had had since he was born left just before they sent the letter out, and the guy who filled it out did so with no notes, no history and 5 minutes "knowledge" of Littlest. He even got a fundamental part wrong in that he said Littlest no longer had Chronic Lung Disease. As a Consultant, he should have known that CLD doesn't go away. There is no cure.
Due to this, it was game over for his claim.
I appealed, as you would. Phoning an 0845 number week in, week out. They wouldn't accept a letter from our Health Visitor. They also wouldn't accept that the Consultant was in the wrong- because he wouldn't admit to them he'd made a cock up by firstly not admitting he'd never seen Littlest or his noted before, or by saying he had mistakenly written no longer has about his CLD.
Every time Littlest became ill enough to be rushed to hospital, I phoned. By looking back at the appeal pack, they really didn't like this. Tough! They were often rude and unhelpful. They made me feel like some dirty scrounger.
In the end, in December (bearing in mind the appeal started in July), we were again told our appeal was denied.Again, I went with a fine tooth comb through the appeal notes. I noticed the guy who had gone through it had misquoted our GP. He had written that such is the seriousness of Littlest's illness, even with minor exercise (such as running across our living room) means he ends up breathless. The appeals person had written it as if Littlest has a bit of exercise he becomes a bit out of breath. His quote makes it sound far less serious.
What was worse, I had provided the new, really good consultants details who had agree to inform them fully, but at first they wouldn't contact him as they said he wasn't informed enough, having only seen Littlest once with no notes for 2 hours. I was incensed as they had done exactly that with the original report, and had told me it was my job to disprove it.
When we made them aware of these mistakes, they looked at the claim yet again, and luckily, they changed their mind.
Great, I thought. Well, no not really.
Despite Littlest still needing infinite amounts of care at all times of day and night, they switched his claim from higher rate care to lower rate mobility. That's £50 a week. We are entitled to a car, but, should we go for that option, the £50 is revoked.
This is how hard it is to claim what is someones right when it's a child. It feels as if they are forced to find any excuse they can not to help, and even if they do, they will never own up to what you are entitled to.
It doesn't help that the Government pumps out false information to the masses through the media. It almost feels like a witch hunt against anyone on benefit of any kind, but especially against the disabled. You are made to feel guilty.
What's worse is that, for every child like Littlest whose claims are revoked, this counts as someone knocked back to work. When do the people off benefit figures ever get broken down by age? The Tories look good to the uninformed masses that lazy scroungers are forced back to look for work, little knowing that a high percentage of those in receipt of DLA are more than entitled to it.
The system does need an overhaul, but not in the way the Tories are trying to achieve. The people receiving DLA should not be penalised for the mistakes of the bankers, and lose their right to a tiny income.
I would like to assure you, if I could give up Littlest's DLA and have two healthy children, I'd do it in a heart beat. Sadly, that's not an option, but it feels like just another authority happy to let my little boy down.
So anyone who has ever wondered whether anyone is really entitled, or if you have total misplaced faith in our ruling party, I urge you, read the figures in the Guardian Newspaper.
Then think again.
False Economy Website:
Responsible Reform by the DLA Help group: http://dlahelpgroup.com/downloads/Responsible%20Reform.pdf
Making It Up Blog: