DLA process for DS2 - feel like a traitor

[whatever17]

DS2 is 11 now and I have been moved off income support onto Jobseekers Allowance.

I know that I should stop being a scrounger but I don't think that DS2 or I could cope without me being very available to him still. My JSA advisor told me to apply for DLA and asked why I hadn't done it years ago. My answer was that whilst I wasn't working or being asked to work I could cope.

So, I have now filled in the forms and the JSA advisor told me to state everything as if it was the worst day ever and not mention all of his good days - and his good points.

I had someone ring me from the DLA today asking for clarification and I had to re-iterate all the bad points.

I feel evil. I love DS2 with all of my heart and I think he is amazing and hate saying stuff about him.

Plus, I cannot remember what life was like before him and a day with him is just "a day in the life" - no big deal, I am used to it.

But I really feel too exhausted to hold down a job and look after him (and the other kids) well. And ex-DH is bugger all use.

The DLA form is horrible as it makes you think about all of the negative things about your DS and none of the positives. I think it was Starlight that suggested to write a list of the positives - 1 for each of the negatives.

You are clearly not a scrounger. You were always entitled to claim DLA and if your DS needs a carer, then you are not able to claim JSA as you are not available to work.

however even tho you are a carer, the job centre will still make you go for a work focused interview every 6 months. as if we dont work enough hours

Really Janet....that is horrendous!

I have just applied for ESA but am still employed by my long term employer. They have told me that I will have to go to work-focused interviews too. Not quite sure what they would do at them seeing as I am contracted to an employer already.

Don't feel guilty. You need to do this. A 'normal' 11 year old would not really be a barrier to you working by now - Ds2's problems mean that he is, and therefore you cannot work, and the government will give you some money to pay for the things your family needs because his disability means you can't work.

PS I felt guilty too.

Understand what you are saying about it being 'just a day in the life'. My DD (16) has PMLD and complex health needs. Requires 24/7 care from me but I still find it difficult to state all the things I have to do for her as it has been my life for so long. Even when a new doctor asks me about which 'bits' of her syndrome she has I find it hard to list them as DD is just DD to me - not a package of health problems.
That said, it is no reason NOT to claim DLA as there is clearly extra work involved in caring for your DS which means extra expenses and impacts on your ability to go out to work. Don't feel you are scrounging or being a traitor - if the state had to look after your DS because you couldn't - it would cost them a lot more than any DLA they will pay for him. Its always difficult filling in these forms as we try to look for the positives in our DC every day but the system requires us to look at the negatives which is always upsetting.
Hope your application is successful first time around.

The DLA isn't for you, you're not betraying him at all, it's for him and if he's entitled to it, he should be getting it.

So you're explaining what he's like to get what he's entitled to, and so that there's paperwork in place if he has to apply himself as an adult (which is after all only 5 years away).

If that then means that you can survive without working, that benefits him as well, because you can focus more on him.

lol

Oh yes, I attempted the DLA form recently, after months of support workers saying we're entitled to it. Very difficult form. I'll try again soon.
I got told CAB are a good help with it?

OP Don't feel guilty. It's what you need to do, and 'scrounging' is better than leaving your child in a situation that might be distressing and unsuitable, just to make the tax man happy.

yep Ben10. they say to you - do you realise how much better off you would be working, you can work in school hours, you get help with childcare. this will get paid, that will get paid. then they ask what is actually wrong with your child (they put it in the computer)
they may even send you for a careers interview. if you dont comply, you lose benefit.
Im gonna tell the woman just how depressed she makes me next month. i come out of the office wanting to cry. im made to feel guilty for looking after my DD.
last time i was due there, it was a snow day and all 3 kids were off. I phoned to cancel as I didnt feel safe driving in the snow and no way could I push a major buggy in it. The woman told me that i should still try and attend as others did with kids. DD was hyper that day so i just told her to reschedule

It took me ages to fill in out a DLA form - I added tons of extra pages of information and it was so depressing. But I'm glad I did it, it's made a huge difference to DS. He gets HRC which meant our tax credits went up by £100pw as well and you also get a premium on income support once you get Carer's (about £30). We've been able to pay for assessments and therapies out of it which I couldn't consider doing before, and just not living hand-to-mouth and stressing about money means I can focus on DS more.

I get called for a work focused interview every six months, but it's much less stressful than signing on. All they do is check that the information on file is correct, it just seems to be a box-ticking exercise and I don't feel pressured to come off benefits.

Don't feel guilty, as the others say it would cost the state far more to pay for carers to look after your son.

We ALL, every one of us, feels guilty. You MUST do this, for your ds. My son is 10 and I gave up a well paid (Nursing sister) job because frankly, I couldn't do both jobs, they being physically tremendously hard and emotional draining. You have to complete the forms as the worst case scenario and with a "normal" child OF THAT AGE in mind.

I know there's a dealine for getting the forms in but, you could take advice from Parent Partnership or Citizen's Advice. It's a long road, believe me but you are (and sounds like you may have been for some time) entitled to this help.

Good luck and get back to us for support as and when!

I remember feeling like I was betraying DS2 filling out those forms as it's like you're saying all the bad things and difficulties and it seems like nothing is positive. But on the advice of others, I made a positive list for myself as well, and had a bottle of wine handy for when I finished.

I heard today that DS got awarded middle rate DLA - yay!

So then I applied online for carer's allowance. And I can now go back on income support rather than JSA. ANd child tax credit

Does anyone know if you actually end up with extra in the end or do all the benefits knock on to each other?

I am having trouble filling the on-line form in. It keeps saying to enter birth date - and I have!!

any ideas anyone?

DLA is independent of other income and benefits, the associated tax credits can vary.
Carers allowance is classified as income, and will be deducted from your JSA or income support, and will be added to any other form of taxable income.

God, I'd never have been able to do it on line. I need the paper version in front of me!

Great news, whatever .

You'll get more money on IS+carer's. The CA is deducted from IS but then you get a Carer's premium added, so in total you'll be better off than just being on IS. Make sure you let the DWP know about getting CA and DLA. You'd think they'd pass the information on internally but it can take a while for the system to catch up.

Your child tax credit should go up as well, call them and let them know you're getting DLA and CA. We got £100pw more but DS is on HRC.

Also, if you get HB/CTB, let your council know. It may increase your allowance, although for us it made no difference as we were in a council flat. But you might get more if HB doesn't currently cover all your private rent.

Also, have a look at the Family Fund for a one-off/annual grant for your DS. If you're on IS, you'll fall within their income limits.

myBoys - it's generally better to call for a paper form, as any DLA awarded will be backdated to the date of your call, so you can spend six weeks filling it in and get that money backdated. If you fill it out online, it only gets dated from the day you submit your form, so unless you can fill it out in one day, you lose that backdated money iyswim.
If you still want to fill it out online, write it up in Word first and paste it in, as it's good to have a backup and it's not unknown for the system to crash and lose all your typing!

Littlefire - thank you for the info. I will let the DWP know, I will call my JSA advisor and see if that is enough notification - if not I will just fill in some more forms! Getting good at these forms.

I hadn't thought of calling child tax credit but will do so. I do get HB/CTC as thankfully we are in a council house and it covers it all.

I didn't know about the Family Fund - I will look them up.

Really, the biggest relief is that I won't be pressured into jobsearching when I realistically can't.

I must say that my JSA advisor was great, she was the one who told me to apply for DLA - I said "oh, we can manage" she said "can you work and manage?" I said "not really". I suppose that's the whole point!

I was thinking about the extra money today and DS has really tight muscles in his back - he loves massages, I can pay for them for him now as the physio isn't very often.

And he often wants me to rent a film off the TV (sky - £3.99 per film) as it is such a palaver going to the cinema and he loves us to sit and watch films together - and I can do that more often now.

I have been googling extra things for carers and saw all sorts like cinema tickets. What about a carers ticket at attraction, stuff like that? Does anyone have any tips about stretching money and claiming stuff?

Perhaps I will start a thread on money saving tips for carers.