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To hate the DWP with the fire of a thousand suns?!

(15 Posts)
TammySwansonTwo Sat 07-Oct-17 11:59:28

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?!

user1471553178 Sun 08-Oct-17 11:25:51

Do you have a local welfare rights service in your area that could support you with your appeal? Child DLA can be particularly difficult when the child is very young because they will of course need care and attention anyway but the fact that you are able to demonstrate a higher level of care than his twin requires should help you with an appeal.

If you appeal you will at least get the chance to meet with a decision making panel face to face and explain things rather than a nameless, faceless decision maker deciding on your child's level of need from behind a desk somewhere!

brasty Sun 08-Oct-17 11:38:12

If there is a local charity that can support you, it is worth appealing.

But I do understand how you are feeling. I was turned down when I should have got it. There are no charities where I live who could help with my appeal and the chronic illness I have, and I simply did not have the energy to appeal, so let it drop.

Allthewaves Sun 08-Oct-17 11:45:50

Try posting on sen board. It's hard to get dla for babies

Dancingfairy Sun 08-Oct-17 11:59:36

Had the opposite with my daughter. Applied for dla was awarded 3 weeks later no questions asked and she wasn't diagnosed filled it all out myself. I know it's not what you want to hear but I just don't want people to be put off applying.

DeccaMitfordsEntryVisa Sun 08-Oct-17 12:04:41

Hi, agree with DancingFairy, it is possible to argue for DLA for a baby. (my daughter received it very early on)

I am sorry it is such a fight, but I urge you to contest the decision. Contact A Family have advice leaflets I believe, or - as previous posters have said - if there is a local charity or a charity that specialises in your child's type of disability, then solicit their help or request ther literature.

Good luck. Take care of yourself.

blankface Sun 08-Oct-17 12:07:04

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. flowers

blankface Sun 08-Oct-17 12:10:48

...forgot to say, DLA (and PIP) can be awarded for short periods, so IF it's believed his condition can change for the better (and DWP are VERY optimistic on this) they can give a short award and ask for review in say a year/18 months, then you have to re-apply and say what changes there have been.

backaftera2yearbreak Sun 08-Oct-17 12:13:01

Find someone to help you do a mandatory reconsideration.

BoomBoomBoomBoooom Sun 08-Oct-17 13:05:45

I'm not sure your condition is relevant since you clearly decided you are healthy enough to have and raise babies.

Since at that age they are pretty highly dependant anyways it is hard to get financial support. From their POV a one year old needs full time attention whether it is healthy or very ill. As for going back to work you haven't for 6 years so I'm not sure his condition is the reason you aren't working. What exactly do you need the funds for? I think you need reasons for them to accept the claim eg. travelling to hospital lots or buying special equipment.

blankface Sun 08-Oct-17 13:15:58

BoomBoomBoomBoooom

You need to look into DLA, see what it is and what it's awarded for because you are way off the mark with your comments. No-one needs to justify their claim by asking for funds for a particular reason.

www.gov.uk/disability-living-allowance-children

SilverySurfer Sun 08-Oct-17 13:20:09

I agree with BoomBoom in as much as the DWP are probably having difficulty seeing how you incur any additional cost for his care. He is a baby, so 100% dependent on you anyway, too young for walking aids or specialised equipment. I may be wrong, do you need it to buy equipment for him?

Babyroobs Sun 08-Oct-17 13:20:17

Did you send plenty of medical evidence from consultants/ GP/ specialists/ dietician or anyone else who has involvement with your child's condition. I think this is the key to a good outcome. Speak to CAB for help with appeal.

Babyroobs Sun 08-Oct-17 13:22:40

Boom Boom - DLA is for the additional costs that having a disabled child brings. No-one checks up what is spent on. You might need to spend it on taxis because getting public transport is difficult, or extra heating because you are home more or special food or equipment or extra rent for a bigger house because a disabled child can't share a room.

CardsforKittens Sun 08-Oct-17 13:29:19

Don't give up. Get help and keep fighting. And get as much medical evidence as possible explaining how the condition affects your child. A friend of mine went through the PIP process recently and he felt like giving up too - it's horrible feeling that you're going through hell and the DWP don't believe you and don't care. Or they seem to misunderstand deliberately. At tribunal, evidence is key. Get letters from everyone you can.

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