Here are some suggested organisations that offer expert advice on SN.
DLA and other's reactions(15 Posts)
I've namechanged for this because I always swore I'd never claim DLA and that it wouldn't make any difference even if I did. I was wrong, financially things have been so awful that if I hadn't we'd have lost our home. DD2 and DS1 are both quite severely autistic, both in mainstream but socially isolated, having tantrums, food issues, speech problems. It has been very hard. Anyway, I applied and I got the full rate of personal care for both of them and the lowest rate of mobility. I have a support worker myself because of the stress involved and she came round today. I told her that we had been awarded DLA and told her how much we were getting and how we had used the back pay to pay off our rent arrears, buy DD2 a new carpet and take the children for an outing.
She then started asking questions about how DWP verified things and asking what the children's main difficulties were, which she then seemed to rationalise - I explained that DD2 tells lies to attempt to be popular and is biddable. I'm rubbish at being put on the spot and I seem to freeze. She basically asked how they verified the claim and whether anyone could make a claim and get money. I felt awkward.
She's been really good to me and I don't want to change workers but I felt a bit judged somehow. Am I being oversensitive and has anyone else been in the same position?
surely as a support worker she should know all that? maybe she was just checking your understanding of the system, or trying to find out info for another family in similar circumstances?
did you get the impression she thinks you shouldn't have claimed? not her business, really. you must have provided paed reports or psych back-ups to get awarded two lots or hr.
She knew that I hadn't wanted to claim and she may have just been interested. I sent loads of info for DS, but just the form and the paed report for DD. But I told the truth and honestly wasn't expecting to get very much. But when I said that if they needed it when they were older they were now being recognised on some level and she looked a bit shocked. She's a lovely woman but I felt like I had to justify it. I do know she's full of praise for people who just get on with it, but financially we can't do that now. I feel guilty enough as it is. You have to be so brutally honest on the forms and I feel like we're profiting from their illness. But I don't feel we have a choice.
You wouldnt have got it awarded if you were not entitled to it. You filled out the forms, (oh the forms!!!!) sent off the relevant reports and they came to their decision like they do for hundreds of people.
Ignore the woman it isnt her business only yours and if it makes things easier for you and your children so be it
Thanks coff3pot and madwomanintheattic . I'm probably a bit too sensitive anyway - life is so emotionally charged in my house .
Please don't feel that you are not deserving of the DLA you have been awarded. I know from personal experience how horrible the process is of claiming - having to detail all the ways your child's disablity impacts on their life. Caring for a child with a disability is costly in all sorts of ways that someone not in your position probably can't begin to appreciate. Congratulations on jumping through the hoops and doing what you needed to for the sake of your kids' quality of life. & it's certainly noone else's business!
Thanks dazeycat. It's not as though we've got this money and can suddenly go on wild spending sprees or live it up on holiday - I'm caring for my DCs! You are so right about it impacting massively. DH and I are permanently shattered, DS1's day starts at 4am , they're both up and down through the night and we have other children to care for. It's just horrible when you're called on to justify it. Thanks for your kind words
Oh love, I posted something similar to this not that long ago and like you, wasnt expecting the amount I got, at the most, the lower rate.
You wouldnt have got it if the DWP didnt think you needed it.
Dont feel guilty, although I did and felt like a fraud at the time it's also one of the best things to have happened. I can afford to get the stuff DS needs (specialist toys, safety lights, bulbs etc), treat both my kids as they miss out on a lot of things because of DS's condition, make this shed of a house into something more comfortable and setttling for DS to ease his anxiety, and a million other things including going to college for myself for my own sanity and a road to a home based business that DS can join in with when older is it's a trade.
I dont usually tell anyone that I have been awarded it, but those who do know are either very close to me, related or are in a similar position with thier own SN children.
Firstly how exactly are you profiting from a benefit which is only given to disabled kids who need it because their needs are so much higher than an NT kid?
Your costs are so much higher in terms of everything extra they need.
There was a josephrowntree report some yrs ago now (I studied it while at university and used it for my dissertation too) stating that having 1 disabled child is 3 times more expensive than an NT child of the same age but having 2 is 10x more expensive.
You have two.
I also have 2 and can say this report was about right!
you should not feel ashamed for wanting to be able to provide better for your children my love. That's what it's there for. And it aint easy to get either!
Definatly agree with the added costs, apart from the stuff that I listed, some of which are just bits that I would have liked to do for years, DS also needs school uniform replaced at least 3 times as often as his NT sister. It's what? halfway through the first term? and already he needs all 3 pairs of trousers replacing, shoes and 2 more jumpers buying as he's lost them despite being under constant watch and with them being labled.
Without the extra money coming in from his DLA there would be no way I could have afforded these without, either not eating myself (which I have done in the recent past) or not paying a bill for yet another month.
I agree with the others - it isn't easy to get and you wouldn't have got it if the DWP had any doubts.
I somethimes think that other people see it as something that should just provide stuff for the kids - they don't realise that because DS is incontinent we get through washing machines faster than most people,(and need more bedding/clothes for ds because of "keeping up", that the reason I have a bigger car (nothing fancy) is to get his wheelchair plus us, plus shopping in, that I do sometimes use the money to pay to get stuff done that most people would do themselves, because otherwise they just wouldn't get done!
No you are not being overly sensitive if you were not entitled you would not get it. To put it in perspective our youngest son (adopted) at 5 was in a residential childrens home and was costing £5000 per week and got his HRM paid into his bank account for clothes etc. Do not feel guilty you are probably saving the taxpayer thousands. Take care and don't worry.
Thanks everyone. The cost is phenomenal. DD2 changes her clothes a few times a day and they need washing because she won't shower often and they smell. I have another child who also appears to be on the spectrum somewhere who smears faeces - we go through disinfectant like it's going out of style. Last time I was pregnant, I lived off toast to meet costs. I don't need to do this now, thank goodness because if I get ill I don't know what will happen.
2old2beamum, £5000 is a massive amount of money. It puts in perspective what a pittance we have managed on before!
LIKE 2OLD says about res costs; my daughter works in a res place and the support workers wages alone are £250k per year for one person (and that's staff on £7 per hour so not excessive wages)
If i put my boys there you're talking about half a million per yr and this doesn't include food/heating/trips etc...so that may put your little amount of DLA into perspective!
BTW If the government gave me £5000 a week they could stuff all 5 of my DC's DLA and manage very nicely thankyou.
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