Feel guilty about spending DLA

[DLAGuilt]

I've name changed for this. My child has been awarded middle rate DLA which I'm very grateful for. So far I have received a lump sum payment and a letter telling me I'm the trusted representative to look after this money. My plan is to spend some of it on additional lessons for my child to assist with their learning. I'll still have some left over each week. But I feel guilty for using it towards things I have already been doing. I'm not particularly well off but I'm managing ok at the moment. My child has a savings account and so far I've stuck all payments in there incl CB when I haven't needed it for my child's clothes etc.

Hi OP, you're doing nothing wrong, I couldn't even imagine what it is like raising a child with disabilities, you and your child are entitled to this money and you're using it in the right way.
Please do acknowledge what people are telling you regarding savings however.

OP, I pay (what feels like a huge amount of!) tax every month.Some of that tax goes towards your DLA.Please, please, do not feel guilty about spending it! Add it to the family pot; buy clothes that are a bit more expensive that are appropriate for any sensory issues; pay for classes/days out that provide your child with enriching experiences that will benefit them; turn the heating up without worrying; buy the foods they will eat etc. Whatever.Treat yourself to a takeaway or get a cleaner or have a hair cut or anything that makes your life a little bit easier or 'better'.But do not feel guilty about it!

I am not entitled to UC or Carers Allowance. Or at least I wasn't when I last checked.

Recheck UC because now DC is in receipt of DLA the amount you can earn before your earnings deduction wipes out the total of your elements has increased because of the disabled child element and carer element.

My son receives DLA. I use it for all his clubs and classes, equipment he needs for classes, new clothes when his old ones aren't soft enough anymore, they pay for replacement items that he breaks, repairs to the house, new pencils because he chews them to bits, his radiator is on constantly in his room as is his heated throw cover, his bedsheets have to be specific ones, he also gets his pocket money from it.

It also pays for when he sees private clinicians.

I'm surprised at people putting it into family pot. I thought it was to "enrich" thechild life

We use ours for extra home tutoring and CBT therapy for our son with adhd.

I assumed it was only to be spent on them and their development. Not to cover bills etc.

You are surprised at people using the money because you 'assumed' they shouldn't?

Get yourself a grip. 'Enrich' the child life ffs. Some people can barely keep their heads above water be due they have a disabled child and need every last penny for living costs.

Good for you we however are a family with only one working parent.in low wage my son goes to a special school very severe and complex needs and I'm unable to work it "it makes everyone's life easier me not working as I'm there to put him in and off the school transport every day and go to al!.his various meetings of which there are many ,t it's no good spending it on extra clubs if we are sat in the dark hungry is it ?
You spend your child's DLA how you see fit, and I'll spend mine how I see fit ,neither way is wrong .

Dla is suppose to be for their day to day needs. I'd be careful saving it they might question it.

The Money Advice Unit at our LA told me,nobody would ever question what we do with DD’s DLA. I often used to save it, to pay for her holidays, or buy her a TV (as an adult). If DC lives in residential care as an adult, and is funded by Social Services, they will take all of DC’s benefits, only leaving DC with a Personal Expenses Allowance of £25.65 a week (next year) for clothes, toiletries, etc. Savings are an irrelevance!

DS is almost 5 and is being assessed for autism. His DLA goes in the household pot and I refuse to feel guilty about it. Because of DS we need to drive more places than we otherwise would for starters (ie to school and back every day a mile away - he can’t reliably scooter). We’d probably have looked at going down to one car without his needs. But the main adaptation he needs though is DH and I to help him navigate the world. It’s really bloody hard to constantly manage my sons behaviour, remain calm and encouraging, try to manage him having a normal life without becoming overwhelmed, trying to ensure his sister isn’t disadvantaged and constantly thinking about what is happening at school and chatting with his teacher to pre-empt issues. I’m staying in a job I don’t enjoy (teaching) because I have holidays off and DS can’t reasonably be placed in holiday clubs.

Today we’ve been to the hairdresser (slightly more expensive than the barber, she is patient, calm and gives him glittery hair spray), then we had a coffee afterwards because that was the deal, then we’ve had a long stand off in a carpark because his sister had a party and he didn’t want to go to his grandparents. I’ve noticed he has the start of conjunctivitis so am about to pop out and buy some eye drops and am already dreading the battle to get them in, even with sweets as bribery it will likely involve DH restraining him and DS hitting us repeatedly.

We may need 1:1 swimming lessons which would come out of it, and I’ve offered to buy things for school to support his hypermobility out of it. But when I sit down and think about how tricky our life is compared to those with a neurotypical five year old and all we do to support him, I honestly can’t feel guilty about it going in the household pot, we have a tough gig and do a bloody good job.

Ricco12 DLA is for the extra costs associated with having a disability. Sometimes those extra costs include bills and a family’s household bills are more than they otherwise would be due to the child’s disability e.g. higher gas, electric, water, food, fuel, parking costs… That’s not to mention parents unable to work or earn less in order to meet their child’s needs.

We spend far more on meeting DS’s additional needs than we receive in DLA for them.

Savings are an irrelevance!

No they aren’t. Savings are relevant for lots of social care provision where there is a financial assessment and also to means tested benefits such as UC.

@Ricco12 being able to pay for food, heating, rent, clothing 'enriches' my child's life. We would struggle to provide that on the one wage my husband earns.
I don't work (in payed employment) because it's just not possible around my daughter.
You seriously think DLA is so a child can go to a specialist club or something? That's almost hilarious.

@DLAGuilt you should be able to get Carers Allowance as your child gets DLA. Just apply for it.

@Needmorelego @JustKeepBuilding I've checked again it looks like I can receive some UC but it depends on DCs nursery fees. I'm not sure how much they'll be once the 30 free hours will kick in. I earn too much for CA which is what I suspected and I'm fine with that. I didn't expect the help I have received.

@DLAGuilt I don't think Carers Allowance is means tested though. I would double check.

It definitely is. £132 a week is the earnings limit just now.

@givethistokevin oh I didn't realise it was means tested.

Carer’s allowance isn’t classed as a means tested benefit like some other benefits such as UC but there is an earnings threshold - currently £132 after deductions and expenses. Here is Turn2us’s page confirming that.

You may get the carers premium in UC?

"I assumed it was only to be spent on them and their development. Not to cover bills etc."

Its to cover the extra costs of disability which can include higher bills and more frequent replacement/extra household items and the costs incurred of one/both parents being unable work/ work fewer hours/ having to take a lower paid job because of the additional caring needs of the child.

Look at it this way, if you weren't caring for your disabled child, you might be able to work more, earn more and support yourself. As your child has SEND they are more dependent on you and that curtails your income. So it's perfectly OK to spend DLA on household expenses if that's what you need to do to keep your head above water. You are doing the right thing for your child by being there for them.

Cut yourself some slack. I'm sure you are doing a brilliant job

Just to say, he definitely doesn't qualify as although we are out of catchment now, we were (just) within catchment when we accepted his place. We've since moved house. Technically, it is also walking distance, though not if you are lazy DS.

We also receive the above additional LHA rate in our UC top-up due to their bedroom needs, and also (this might help others) a concurrent council tax rate reduction to compensate for this also. We live in an expensive area so still have to top these things up.

It's really hard, in so many ways, to have disabled DC, but there is some help out there if you know what to get and how. If you receive UC, having a DLA award for your child can also open up qualification for other things; for example, this year, we've received a warm home discount and a cold weather payment. We've never had those before, as we only transferred to UC earlier this year.

I'm glad to see you're feeling better about things OP. It certainly is a punch in the gut the first time you get the award through. It's that confirmation of what you already know, but might have been able to internally ignore for a while, isn't it? << Unmumsnetty hugs to you >>

"I assumed it was only to be spent on them and their development. Not to cover bills etc."

No , it's to help with the costs incurred by caring for a disabled child; it's not for spending directly on the child necessarily... unless you want it to be. I gave up my job when DH started working away so I could manage DD, and it took many months of DLA to replace two broken windows, a broken TV and three broken doors.

Isn't that what carers allowance is for if you can't work.

I'm just going by what the letter I got said the money was to be used for .

It's actually said to enrich child's life.

It didn't mention paying bills etc that's all I'm saying I didn't realise that's what people were using it for.
I assumed things like Universal credit etc would be for that.
Carers allowance because you can't work.?