DLA spending

[Anonmom812]

My daughter recently was awarded DLA.. She has just turned 16, the award is for £412 every 4 weeks...
She gets £25 a week of it for spending and another £20 a week for her bus ticket.
(I have tried giving it her weekly to help her learn how to budget as when she has it all at once she often tends to spend it all at once and then had none left for the rest of the month)
The rest of the money I split between extra food (she often won't eat the same as everyone else) music subscription for her (her special interest), savings etc (incase she needs clothes or other things etc)

She always gets to the end of the week and has ran out of money so am I being too tight with it?
I don't want to be controlling but I also don't want the money to be wasted on take aways and the corner shop

This is new to us so please any helpful suggestions or thoughts are welcome

Is the £25 the only pocket money she gets?

Could she get involved in the money you are saving such as jointly deciding when she needs clothes etc?

I have to pay out for shoes for DS. They have to fit his insoles and be supportive enough. I tend to buy in advance when they are in the sales as I know his will soon wear out and need replacing but it’s still expensive.

His dietary restrictions mean he is mainly tube fed overnight. Feeding tubes are fantastic but they also do leak meaning I can have to change his bed two or three times a week easily. I also have to pay out for decent mattress protectors and have still spent a fortune on mattresses.

I recently had to change my car. It’s only me and him so I should have been able to go for a nice little run around. Instead I had to pay extra for one big enough to fit his wheelchair in.

I think a lot of people who don’t live it don’t get the hidden costs. Many parents living it become so used to it that until they do stop and think they don’t realise how it adds up

Thankyou - I didn’t even know I had the option of asking for another format of assessment. His DLA
was awarded till 16, when he was tiny, so this is the first time I’ve had to think about it that much lately.

Using DLA/PIP to cover household expenses is a perfectly legitimate and acceptable use of the benefit - there is no prescribed way to spend these benefits and it’s clearly never crossed your mind that in many circumstances household income is reduced when a parent has to take on significant caring duties, and disability benefits used in this way can ensure that the child/disabled person doesn’t have reduced circumstances as a result. It directly benefits the claimant - nothing wrong with that.

It is something they like to keep close to their chest. When I or the parents (as appointees) I support ask to swap the type of assessment for others and explain why, I/they are rarely refused.

Completely understandable, but as much as you can try to be detailed. Its the opportunity to get these difficulties across. Though I am not minimising how difficult it is. Be familiar with the assessment criteria (I added a link earlier in the thread but that was for DLA- on the same site you will find what you need) and I hope it goes as well as possible

I think it’s a bit rich that DLA manages to fund savings. It’s for extra daily needs isn’t it?

You've totally missed the point then. Many of these young people need different/specialis food, a lot of additional clothing/footwear. Incontinence products. Increased laundry. There's multiple other costs depending on the need. The money is for the additional costs of the condition compared to those of a child the same age without the condition. It is NOT confined to the traditional view of adaptations, wheelchairs. Some disabled young people need those, others need something completely different. Incidentally, DLA which is paid up to 16 is paid to the parents in respect of the child. Ergo the parent/guardian is the recipient and overall best placed to assess the unique needs of their equally unique child.

Some of us have to save to buy expensive equipment

One of our autistic kids we claim for because their needs are significant. The other autistic child we do not claim for because their needs are less costly in money and time. Not all autistic people.have the same needs.

I can't work and our one child can not attend school, they struggle to learn and manage emotions. They have difficulty with their legs too.

The other child attends school l, is able to do the academic work and has no issues with their movement.

These 2 children are both autistic but their needs vary vastly. We wouldn't get DLA for one of them and we don't need it but we do need it for the other and we get it be ause we have evidence of need

Why is it "a bit rich?" There is absolutely nothing wrong with it. If a parent manages to keep some in savings to negate fluctuating costs why is that an issue? Some may argue it shows good budgeting. And there is rarely much left to save.

This is 100% true for me too. I found filling in the form both painful and therapeutic in equal measure. I realised I am actually a parent-carer for my daughter and it takes so much time and effort. That's why I am knackered, not because I'm weak. Our family's days have her regulation at the heart of them.

Oh man, all this talk about benefits being too much. And how disabled people shouldn't be saving. The mind boggles really. You do realise that PIP and DLA aren't out of work benefits, nor are they subsistence benefits? They are intended to help with the extra costs due to being disabled, which they seldom meet. They are not means tested, either. You're thinking of UC, which yes does reduce with income or savings. You'll be glad to hear anyone saving from PIP will simply lose UC if they're not working. A lovely, enviable poverty trap you're wishing on others.

Here I am today, wistfully waving my pretty bloody decent day rate goodbye over the horizon, rather fabulous CV in the wind, almost out of savings and looking at benefits I may be able to get now that disability has made my family utterly broke... My advice to everyone is don't be me, claim what you're entitled to as soon as you can, save if you bloody can because why the hell shouldn't you? I sincerely doubt I'll ever save enough on bloody DLA and UC to fulfil the ambitions I had for my child's future. In fact, I certainly won't, because UC tapers away with savings. Oh the plans I worked for before she was even born! Honestly, some people, I do despair of how little you know.

Many disabled people have to save for equipment. Nothing wrong with that. This isn’t a means tested benefit and can be spent in whatever way supports the recipient. And why shouldn’t disabled people be able to save a little ?

Often earnings are directly affected by having a disabled child. I can’t put my child in wraparound care, or find a childminder who can deal with his level of needs (and his aren’t as severe as many other children) and family members who can happily watch my other child can’t cope with him either. So although he doesn’t require specialist equipment etc it’s been a big and ongoing financial hit.

There have been a fair few threads recently about children with SEN being disruptive or violent at school and many, many posters expressing that it’s not an issue if they are removed without anywhere else to go. I always wonder whether they are the same posters insisting mums of disabled DC have no excuse not to work fulltime.

Some people need to save to go towards a down payment on a motability car, or housing adaptations to make it more accessible. These are daily needs, but they take some saving for

Do you guve her option of say £15 top up if she is heading out with friends on a Saturday?

With no savings where do things like an off road specialist buggy come from? The NHS don't supply them and, without one, my child wouldn't be able to go for walks across the grass in the park or through the footpaths in the woodland. His NHS chair is OK for flat surfaces like pavements but it can't cope with rough terrain. Without savings he wouldn't have a comfortable seat at home, he'd be in his wheelchair for most of his waking hours. Don't we all like to come home and have a comfortable place to sit? I sure as hell don't sit on a dining room chair when I could sit on the sofa and why should he? His off road wheelchair cost me over £3k and his chair for in the house was almost £2k. I can't go to places like IKEA and buy him a child's chair because he lacks the tone in his muscles to sit without specialist straps and supportive seating.

He's 5. He deserves to be able to experience things lots of us take for granted like a walk in the woods and he deserves to be comfortable when sitting in his own home.

I am in no place to judge but I think you should be covering her bus tickets and other things that a parent should cover including treats. and then you manage the money to fund only things that are more expensive like the difference between the price of a regular top and one that she needs because of her disability if you understand what I mean . That’s what I would do

🙄

Wow no wonder the country is facing bankruptcy.

Why have you rolled your eyes at me?

This will end soon though. We have no option. It’s just not an efficient way to spend taxpayers money.

I claim DLA for my DC even though I theoretically don’t need it (higher earner), as it’s for my disabled DC needs, not for me.

DC gets £558 per month DLA.

Largest expense before I recently changed jobs was Nanny Housekeeper which cost almost £4k per month, but allowed me to work (single parent).

If I didn’t have a disabled DC, I’d have 2 DC in the same mainstream school, costing £15 per day each in after school club (DC special school has no after school club), plus a cleaner £80 twice a month.

DC various therapy sessions alone cost circa £400 per month as all one-to one, not to mention the cost of clothing which doesn’t irritate their skin, and specific foods which DC can tolerate.

DLA simply offsets costs incurred by families with disabled DC, it’s far from being just a handout!

Isn't it obvious?