To think the way I spend dla is ok?

[Opal93]

I do always keep in mind that it is to be spent in my sons interest. I do try to put some away for his future, but each payment does help us pay for his additional costs due to his disability (pull ups, appropriate toys, sensory equipment, for example weighted blanket or sensory toys), it goes towards general care of him too such as groceries and clothing, we used some of it towards fuel/car payments as this allows us to take him places he likes and to appointments, sometimes it has went towards replacing items he has broken due to his disability (TV). Most importantly, it buys me time with him, as it allows me to be a SAHM, and I think this benefits him most of all as I know him best and can manage his condition best. AIBU to think I am spending it ok? I do feel guilty sometimes that I haven’t saved a lot of it, although some is saved and that’s better than nothing!

There is no point in saving it otherwise is he has money when he becomes an adult he will loose benefits/have to pay more for his care. DSis is an adult that will never be independent or hold a job, I think from memory it’s over £6k and she starts to loose some. Over £16k and she has to pay for everything.

It’s to support on a day to day basis. What you’re doing is fine.

I’m not sure I really understand the “it’s not for saving” attitude? Surely, as the parent, you are best placed to decide what that money is for based on your child’s needs and your family financial situation? If you feel the best thing is to save it, great, if the best thing is to spend it now, also great. If you’ve spent it on a Chinese because you’ve spent the entire day caring with every fibre of your being without a break then you’re an absolute hero.

In terms of pushing savings above threshold for care - open a trust fund specifically for disabled people. That money can then be managed by someone else (you, a trusted relative) and will not affect the individual’s saving amount but will allow them to be more financially stable as adults. Then tell anyone (eg grandparents) about it who might consider leaving money in their will so that they leave it to the trust and not the individual.

And finally don’t beat yourself up. It’s hard and I’m sure you’re doing an amazing job.

@Autosavepassword

The last thing I brought with my sins DLA was last night's Chinese takeaway once he was in bed. To be particular about it:

Ribs,
Sweet and sour chicken
Beef in black bean sauce
2x egg fried rice
Prawn crackers.
Chicken and mushroom soup
Mini spring rolls.

He had beans on toast for tea. Was I being indulgent: yes. Should I have cooked: probably

Before I get absolutely pilloried for this let me explain a bit about DS. He has complex ASD and lots of other needs including severe challenging behaviour. He's 9 but has the functional ability of a toddler. And needs constant supervision. Every waking second. Even his school agree with me on the continual supervision thing. And yesterday started at 0437.
He's being very very hard work at the moment because he knows school is back again on Monday. I spent most of yesterday trying to stop him maiming himself/myself/his brothers. So yes, I would have liked to cooked a tea we could all eat together (while he is strapped down on his highchair), however I had 10 minutes to produce something while his brothers were distracting him with Postman Pat. So beans on toast and the Dragon hut it was.

Other DLA purchases this week have been copious amounts of summer clothing (because the nappies we get off the inco service are useless and leak like hell), a new safety harness for my car, more bedding (see above r.e. nappies) and I'm currently ignoring the noise my washing machine is making which sounds like it's about to die a spectacular death.

I would give my right arm and every penny of DLA for just one day where DS was a normal 8 year old boy and we could do normal 8 year old boy things. Just one flipping day. Ain't going to happen though.

Spend your DLA exactly how you want, OP. It's hard enough work even filling in the form.

Can totally relate to this. Would give anything for the family to live a 'normal' life. Even family members don't agree with the money we receive. I would swap all the money in the world for my sons to not have to face their daily struggles. You're all doing an amazing job👏. If the DLA goes towards things that benefit the whole family I see it as one less stress that the parents face. Let's face it most days are stressful enough without adding money worries into the mix!

My daughters DLA paid for us to get away during the deepest dampest months, which as she has chronic lung disease, enabled her to get through the winter without hospitalisation. We also used funding from Family Fund especially given as travel vouchers for the same thing. It didnt all go on that obviously, but certainly contributed. The year we couldnt go resulted in a 6 week inpatient stay.
My sons DLA pays a share of his school fees, as he just was unable to cope in mainstream school, despite the high ranking ofsted. I knew, from when we tried with my daughter and she ended up at home for 4 years, that it was pointless challenging the council to provide, and by the time they did he would have finished school, so Ive used his money for that

You're spending it just fine.
It's for the additional costs and loss of income from raising a child with disabilities.
It's not enough money really but some support is better than none.
I applied for DLA for my child but was rejected so I know the hoops you have to jump through.
It certainly is not enough money to save for the future as well as spend for now.

Sounds good to me. And actually, how you spend it is your choice

"You don t save up dla for a 10k wheelchair ...ask a charity for that"

Ds although he needs one is unlikely to qualify for a wheelchair from a charity because he doesn't have a physical disability. We have to fund his off road wheelchairs and buggies ourselves.

I hope no one has said anything to make you feel guilty about how you spend your DLA op?

You get to decide how you use it and anyone else needs to butt out. Ours gets paid into my bank account and used for day to day expenses. We don't ring-fence it.

Why shouldn't it be saved? If the OP is already providing a good life for her child, any extra money in the family pot can be saved. Odd attitude.

@LaceyBetty

Why shouldn't it be saved? If the OP is already providing a good life for her child, any extra money in the family pot can be saved. Odd attitude.

No reason at all.

The pint is that OP shouldn't feel in any way guilty because she isn't saving any of it!

It is not intended to be a pot of savings. It is intended to be spent precisely as OP is spending it and she need feel no guilt about that!

The odd attitude is the one that glossed over the OPs last sentence I do feel guilty sometimes that I haven’t saved a lot of it, although some is saved and that’s better than nothing! and didn't think that she needed reassurance that she isn't doing anything morally reprehensible.

DLA is for living expenses, which is what you are using it for.

I get my daughter's PIP and UC because she can't cope with money (she's autistic) and I'm her full time carer. It goes towards putting a roof over her head, household bills, food, petrol in my car to take her to appointments, essentially anything that we need for her to live comfortably. I keep a certain amount for her to spend on her hobbies but I have to ration it because she doesn't understand value and would happily spend the lot. As far as I'm concerned, this is an appropriate use of her money due to the fact that I can't work whilst caring for her. I save a small amount which tends to be spent on bigger purchases (furniture etc.) when needed.

@CuriousaboutSamphire ah, thanks. I missed that subtlety. I thought she was being berating for saving some. Agree, that OP shouldn't feel guilty for using it in the here and now for the child's wellbeing of there isn't enough in the pot for savings.

*being berated

Its down to your discretion how you use it. I tend to pay for therapy and other health related costs with mine. I also try to treat DH and DD with my PIP every couple of months, because ultimately my disability changes their lives, and I can be challenging to live with. I show my appreciation for their understanding and help whilst I'm sure that most would say that wasn't what PIP was for, it could go on paying someone to help me meet my needs, but instead my family does, so there's spare money that comes back to them.

You could maybe investigate some clubs he might like, and think of ways of using the DLA to fund those; perhaps a carer to accompany him, if relevant.

The idea is to bridge the gap between what he is able to access ordinarily, and what he could access were the funding to be there to remove the barriers to participation. He should have the opportunities that other young people of his age access. I'm sure you are focused on making sure that happens, from what you say, and organisations to help families experiencing disability - like Mencap - could suggest what other families do with the funding.

In some cases, children with disability require more stimulation and activity as they get older and reach the teenage years, and want interests which don't involve being taken places with the family. I don't know your son's age, but you might find his leisure needs increase over the coming years, and then it will be very clear what needs to be funded to enable him to live the life he wants to.

Clubs, and learning a musical instrument; types of physical activity are things he might want to do, going forward.. It is sometimes difficult to access group sessions, and the DLA ( PIP now) is useful to fund one-to-one instructed sessions. My son, who is autistic, did climbing and kayaking and tennis and skateboarding and swimming, and always had one-to-one instruction, as accessing a group session wouldn't have worked. He is probably a lot more into physical activity than many. There was a time when he was primary-aged when going to the park would have been enough, aside from playing with toys and having cycling and swimming lessons, but, in the teen years, he wanted more. Mentors are a good idea for older teens, as it gives the young person someone to relate to and talk to who isn't a family member, and if it's a young, cool mentor, it often boosts the self-esteem and makes the young person excited about reaching adulthood.

Just be prepared for things to change. Have the savings there. Make sure there are some holidays geared to what he likes. Pay for after-school clubs. School will put in his mind activities which he might like to take up in his leisure time. ( They are always trialing BMX and climbing and things). Just be conscious of always giving him the chance to express a preference for what to do, and you should be ok, because you are clearly conscientious and thinking about how to spend the money.

I think you are spending it very appropriately. In fact it would be wrong to save it if your DS needed things which he does.

DS is 14 and his goes into an account in his name. He has payments which come out for his music therapy and normally his disabled swimming club fees, but these have been on hold. I use the card to buy DS's very small but quite expensive food list as his diet is extremely limited.There might be some left over each month. I dont actively save it but we don't always spend it all. A few months ago DS eeded a new specialist bike which cost £££ and so the fact we hadnt spent it all meant he had money saved to buy it.

Don't feel bad about spending it how best suits your family. Unless you are blowing it in a casino or buying Louboutins every month its okay.

Yes of course you are fine. I have a disabled son (now adult) so know a lot of families with disabled kids and we all spend the money how you do although not necessarily with the savings.

It's only on Mumsnet that I see people suggesting that it should be salted away for the children. Probably by people who have no idea of the extra costs involved.

I’m an adult DLA claimant with an indefinite award (lifelong disabled not yet moved to PIP).

I disagree with the PP who said you don’t save up for big items, you go to charity. The various charities are great and really helpful. But often as disabled people we can’t wait to find a charity, apply, wait often weeks for the next time they consider applications.

When my washing machine broke in December I could have gone through a charity. But how was I meant to manage in the meantime when I need to put washing on most days due to my disability, I don’t drive and the launderette is miles away?

Nearly every DLA/PIP claimant I know keeps a bit if they can afford it to cover those expenses.

I don’t save my son’s DLA. He’s 6 and non verbal autistic and eats around £70 a week of fruit alone. There isn’t anything left to save 🤷🏼‍♀️

I spend my dd’s on keeping her pony - horses are her special interest and she finds it so soothing to be around them. It gets her out of the house doing physical exercise and it’s great for her strength and coordination. I’m sure many people would be sniffy about this but oh well.

I'd go as far as to say that spending occassionally on a treat for yourself would not be inappropriate. You need to be the best parent you can and the odd pick-me-up will help you do that.

if you are sahm can you claim carers allowance too? I did when I was SAHM with disabled dd. I felt guilty about it, but it was the constant nature of attending appointments that had made me give up my job.