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.

It's hard to quantify the costs involved with having a child with additional needs at home. One example could be that they maybe soil clothing more often so your electricity bill for the washing machine will be higher and clothing will have to be replaced more frequently than other children's clothing.
It doesn't have to be specifically earmarked for a big thing directly for the child.

Don't feel guilty.

My friend has two autistic boys, one severely and non-verbal, the other in mainstream but on the spectrum.

If she spends a little of her boy's dla on a night out for her and her DH from time to time, that is totally justified in my book given how hard their lives are.

Just spend it on needed stuff for your child. Someone I know saved a lot of her kids DLA, he was not entitled to PIP as an adult, that’s another story. She really struggled to pay bills, when he had access to the money he wasted it all. I mean any 18 year old given a large sum of money may waste it.

I think the idea of extra lessons is a great idea because overall it is the building block to improve not just the now but your little ones future. Good luck.

My daughter's PIP goes on food, heating, water, housing and any other bills that we need to pay. If she were to save it, she'd lose her universal credit. We have to spend it, and it's meant to be spent. Plus, as a full time carer, I don't receive half as much as she does and we'd struggle on just her dad's salary.

DLA goes in the family pot here. I echo others about being careful of saving in DC’s name due to means tested benefits and support that is subject to financial assessment.

Does DC have an EHCP? If so, SALT can/should be included in there, so if the NHS can’t or won’t provide it the LA must commission independent provision.

Yes, like others, all goes in the family pot. I work part-time as I feel I need to be around for DS more due to his disability, and I feel it offsets that loss of income.

Stop feeling guilty. If they didn't think your child warranted it you wouldn't have got it. It's only awarded because their needs are greater than other children of that age.

Do not save up huge sums. It will stop your child from qualifying for other things when they become an adult if they've got a large lump sum.

You are well within your rights to use it for day to day expenses such as petrol, heating, water if your child's disability means you have to use more of these.

@JustKeepBuilding no DC hasn't got a EHCP. It is my understanding from their support worker that I cannot apply for one (through nursery) until Sept 23 in readiness for school - which is another massive hurdle to get a SEN school. I will utilise the money as best I can for our needs together (I work PT too) and DC's needs solely to improve their learning/development.

Not true you can apply for a echp anytime my son had an echp from the age of 3 whilst in nursery.

The support worker is giving you incorrect advice. You can, and should, apply for an EHCNA now, you don’t need to wait. Applying now also gives you the maximum time to secure an EHCP prior to starting school - many have to appeal, some more than once, and appeals are currently taking a long time.

Do I apply direct to the LA or through Nursery?

You're doing nothing wrong at all. Looking after after a child with a disability /difficulty has lots of hidden extra costs that you're so used to you're probably forgetting about them as an extra financial burden.
There is no instruction or direction in how DLA is supposed to be spent, and no, they never ask.

2 of my dc receive HRC, the money just goes in with everything else. I did go through a stage in the beginning just buying them stuff every month but ended up with a house full of tat and 2 kids who expected a present every week.
you don’t need to justify what you spend it on. If you want to spend it on a holiday to the Bahamas that’s no one’s business but yours.

Directly to the LA. IPSEA have a model letter you can send to the LA on their website.

My parents used any of my DLA that wasn't needed for specific things for me towards general family living costs. I'm really pleased that they did. Money was tight and a big source of stress for them even though they did their best to hide it. Anything they could do to make general family life easier was eminently sensible and of course benefited me.

Were my child to receive DLA I would do the same. If I needed that money to put the heating on more, buy groceries or whatever I would do it without hesitation.

Kick that guilt up the ass. I notice you say yiu put CB in an account when you can. Not everyone will be able to do this. Spend the money how you see fit.a day out at a particular place that your child would enjoy is justifiable as is keeping the house warm,not just their room

Think of it this way - as a parent it's your job to help your child have a comfortable and supported life. This money is a legitimate means to do that. If you make it more about their childhood experience, I think you'll feel reassured about spending it.

@JustCakeInDrag said it best. When the DLA letter came through for our DS I was hugely relieved but a small part of me seemed to have been waiting for the DWP to say : "of course he's not getting DLA, because he's going to be fine". And he's had a diagnosed brain injury, so that was never going to happen. Perhaps some of your worries about spending the money might unconsciously come from this place?

my mum says to put towards the heating as I heat their bedroom separately through the night to keep it warm as it does get chilly in there. I will still save some of it for them as my plan was to use it towards school trips etc. I do use more fuel taking my child out and doing things as they get overwhelmed staying in all day so we are always out.

This is exactly what DLA for a child is designed for, covering extra expenses you would not have if your DC didn't have additional needs.
I think if you sit down and tot it all up OP you will discover you are spending in quite a few different areas. You are doing exactly what you should be doing with DLA so carry on and don't give it another thought

The financial impact is so much more far reaching. Our DDs DLA goes straight into the family pot and I feel no guilt about that. It doesn't even begin to cover the reduction in my salary due to caring responsibilities as I had to step back from my career and move to more flexible work. It helps mitigate that and we would struggle without it as I used to earn double what I now can.

I had to take a low paid term time job when dd was younger. Having a disabled child impacts your finances in so many ways. Don't feel guilty.

I echo what others say about savings too. Dd is now in supported living on means tested benefits. She pays a proportion if her care, any savings would've gone very quickly indeed!

Just put it in the family pot, do not feel guilty about it.

DO NOT save it. I know someone (yes personally) who had a chunk removed because they said if you aren't spending it l, then you don't need it.

Please spend it as you need: that’s what it’s for.

We receive DLA for two DC, and it mostly covers increased rent and bills, which we incur by having to ensure they have their own bedrooms (truly not possible to share). It also covers the specific foods they will eat, and replacing clothes that they go through far quicker than my NT children (still no idea how). It helps to fund our second car, which gets DS3 to school, which is out of catchment due to SEN. He doesn’t qualify for transport or a Motability car.

To an outsider it would look like it’s not spent ‘on’ the DC directly, but it absolutely is.

You are entrusted to use it to meet DC’s additional needs, whatever those may be.

He doesn’t qualify for transport

Have you challenged this? SENTAS can help you. It sounds like DS does qualify for transport.

It may not apply to you, but for anyone else reading who receives UC or housing benefit if DC who would normally be expected to share can’t because of their disability you can receive the rate for an additional bedroom. Although, obviously it may still not cover the difference for private rentals.

I'm crying reading these. It's such a relief. I don't think I notice the cost that I incur but when I think about it there is a lot. Things like nappies and clothes. We go through so many clothes. We have different home and nursery ones because they will come back with food, glue, paint etc down them and I'm happy they are because DC is happy and joining in. DC baths pretty much every day as there will be again glue paint food in their hair. Clothes have to be a certain type and feel. Thank you. I honestly couldn't see where the costs were but I can now see I have a lot I didn't think about. Even when I have days off I still send to nursery so I can get housework etc done. I know latterly it will help pay for wrapround care too.