I have multiple chronic illnesses. I had to stop working six years ago and have never claimed a penny in disability benefits (or others - just claimed CTC for the first time) because I was told outright "you're the wrong kind of disabled". True but infuriating.
Had my twins a year ago. One was very quickly diagnosed with a very serious and rare illness. Took two months to stabilise him on the right dose of medications and diet so although he's currently stable, I still have to monitor him constantly, test his blood 10-12 times a day, administer meds etc. He needs significantly more care than his twin (testing, feeding more often, he wakes to feed every hour or two at the most) and his illness is a constant source of anxiety.
I was told he may grow out of it so didn't apply for DLA right away. By the time he got to 8 months old and his needs were still the same I applied. Read all the guides, made things very clear and constantly compared his care needs to that of his brother.
It was initially refused as many are, so I wrote for a mandatory reconsideration with more information. Just had the letter refusing it - apparently because he's stable at the moment, he's ineligible. They've referenced vague comments in a letter from his neonatologist which are not accurate, not even the consultant who specialises in or understands or treats him for this condition. Of course he's stable - that's the point of his medication and if he weren't he'd be brain damaged. Kids with type 1 diabetes (the opposite of his condition) are also kept stable through testing and medications but they understand the needs there. He's stable because of the many things I do throughout the day and night to keep him stable. Some kids with it are far worse off and never stable, we are more fortunate than them, but stating that he doesn't need significantly more care than his twin is false and frankly insulting.
I'm absolutely livid but also exhausted and have no energy to appeal - I know this is what they want, but with twins, one with this serious health issue and health issues of my own, I've put in as much energy as I can to this process. It's not even about the money, it's the principle. I couldn't go back to work and leave him with someone who hasn't spent a year learning how to deal with his condition, it's too risky and too scary. I can't leave him with family overnight.
I know I should appeal so they don't keep getting away with it but can't face it. Why do they have to be such immoral fuckers?!
AIBU?
To hate the DWP with the fire of a thousand suns?!
TammySwansonTwo · 07/10/2017 11:59
Keep going, I'm waiting for a date for a PIP Tribunal hearing for dd who is now adult.
I had to go to tribunal for her DLA, (although until her teens I'd thought
she was the' wrong kind of disabled' and had never applied before) It was in a room in solicitor's office in my nearest city. The panel I had to present evidence to consisted of a Judge, a Doctor and a member of the public who had a disabled dependant. The Judge and doctor were what I'd call old-fashioned gentlemen, they genuinely wanted to hear how dd's needs differed from her peers and at no time was I made to feel I was "on trial" they are so different to the DWP.
Go through the whole process, it is soul destroying and it's designed to make you give up at every turn.
I know it's hard but any idiot reading your post can see that other parents don't have to do what you have to for one of your twins. You have the ideal comparison between your individual twins' needs.
Who is dealing with his care now, is it just a GP or consultants or midwife? Ask them to write a letter of support for you, detailing their opinion about how much extra care he needs 24/7.
Keep trying, every time DWP say no, appeal again. I know how hard it is. 
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