Can I save DLA for my child's future?

[SpecialMum]

Hi all,
This is my first ever post here. I have a severely autistic non verbal child. She probably cannot lead an independent life. She receives middle rate DLA and I receive carers allowance. I had to quit my well paid professional job as her care needs are very high. I am worried about her future and do not want to burden my other child (eldest) with her responsibilities after us. So, can I save her DLA in a savings account ?

I did read in Facebook pages that DLA will be cancelled if you don't spend the amount on the child and are saving. To be honest, I don't spend my carer's allowance either. I have spent a very little amount off the DLA /Carers so far. It's not because I don't need it but because I am worried about her future. We don't go to holidays either because it's equally stressful for the child and us. I don't buy a lot of clothes, bags, shoes for myself as I am not working and do not go out and about. I basically lost interest in all these.

We try to meet our needs and buy whatever children need(toys, sensory equipment, tablets) with my husband 's salary. That doesn't mean, we have a lot of bank balance but we do have our own commitments, loans and mortgage. I keep the house expenses low by buying few things like may be furniture, curtains, decors etc from gumtree or marketplace. But food is something which we never compromise on 😜. We have a loan borrowed when husband dint have a job for few months due to covid but did not spend the DLA or Carers amount.

So, my question is, can I save the amount? By doing so, will I loose both the allowances and all my compromises will go in vain. Please don't judge me😔.

If you can afford it get some private therapy. Definitely speech and language probably also OT.

You will be able to get out on Holidays eventually and it will do you and your child good.

I'd spend it on ways to improve your child's life now - who knows what the future holds.

DLA won't be cancelled if you have savings. It's based on care needs alone, salary and savings don't come into it.

I have 2 children with DLA and it goes into the household pot. Some is saved, some on bills and some spent. No one cares or even checks.

I saved half of it and put it in a stocks and shares account, my ds sounds similar. Care/therapy/interventions for young people with ASD dries up and then completely stops (in my LA anyway) when they reach 18, so for us it will be more beneficial at that stage in accessing private services than it would when he was younger. I've never heard of anyone having to justify how DLA is spent, unlike PIP which I have.

Yes you can save it but you need to be aware that if, when your child leaves education , they need to claim a means tested benefit like Universal credit because they are unable to work, they will not qualify if they have savings over 16k. I have seen this happen to quite a few young adults, they claim PIP and a means tested benefit like the old esa or UC and because they live with parents and don't spend a lot it soon builds up and they lose the means tested benefit.

You won't lose it, they don't check. But you may find you need it - we had to spend quite a lot of money on private assessments and legal assistance when my child needed an EHCP for example so i'd say using it for things like that take precedence over future needs.

You can do whatever you want with the DLA money OP. I can’t imagine anyone would ever challenge you about where it’s going. We’ve been getting DLA for DD who is deaf for 4 years now, since she was diagnosed. It just goes in the family pot, we don’t spend it on specific stuff. But there are myriad additional costs to having a child with SEN, far above what DLA covers... e.g. for us- loss of earnings (I too gave up my career), running a car to get her to and from appointments, sensory toys, etc etc. It’s totally up to you what to spend the money on, or indeed to save it. I think the only time one would ever get challenged would be if the child was being neglected, which is obviously not the case! You sound like a fantastic mum

When your child is an adult her care needs will gobble up her savings. What you save will go nowhere towards this so it's a bad plan. Tell your other child that they are a loving sibling but not financially responsible for her (but if they wish to can take over as her advocate after you). Then make sure you access all social care support and benefits for her as a child so that they transition her to help services as an adult and she gets the right funding. Spend her DLA on the extra costs of having a disabled child and things that will be good for her. Save some family money for holidays.

We save ours , my dh has a great job but that doesn't mean we won't need the money for our son when he retires . It's one of the things that keeps me awake at night and we save as much as we can all round .

There’s a myth that they check what you do with the dla. They don’t. You can do whatever you like with it. But I wouldn’t save it for future care- if this is needed an assessment should be made and it should be provided free of charge. I would focus on using the money to improve things now, live in the moment etc. This is what we do with my son who has severe autism and learning disabilities and receives high rate dla.

Just came on to reinforce what others have said:

• You won't lose the DLA if you save it
• You might lose out on other means tested benefits, or have to contribute more to care costs if you do have savings
• Having a disabled child is hard enough, do consider using some of the money now for things that would improve all your lives e.g. OT, SLT, childcare so you can have a break, towards a family holiday, day trips out, sensory equipment - whatever works for you!

Good luck 🌺

DLA won’t be cancelled if you save it, however it is intended to be spent on the needs of the child - fine to save for eg a specialist safe bed (several thousand pounds) but you won’t be doing your child any favours by saving it for adulthood - once they turn 18 they will lose benefits if they have savings over a certain amount, they will be charged for all care they receive, and it will vanish into social services budget rather than bring your child particular joy.

Why not think about things it could be used on which would improve your child’s life now? Private speech or occupational therapy, maybe hiring a PA to be an extra safe familiar person who could help out on days out, save towards turning a corner of your hone into a sensory sen safe retreat with specialist lights and robust kit?

It’s not reckless or selfish to spend it. It’s paid in recognition of the fact that with additional needs come additional costs.

Many families use it towards the mortgage if one of them has had to stop work; effectively it’s buying in the other parent’s time.

Others use it in all sorts of ways. If you get mobility component, the Motability scheme is amazing, swap your mobility allowance for a bee reliable car with all servicing and repairs covered, so your only ongoing cost is fuel.

Other people use it towards for eg making sure they can take a holiday in the same place every year, which helps with familiarity for their child. For equipment around the home - a bigger buggy and larger walking reins, a larger 5 point harness car seat, that sort of thing. Or (in normal times) membership of local places the child has an interest in - zoo if they like animals, car museum of that tickles their interest, whatever it might be.

At the moment ours vanishes on private therapies. Expensive but if they mean we will be living with less frustration and stress in the future then that’s great. Additional clothes to replace the ones chewed through. Stockpiles of a favourite toy ready for when they stop making it.

Definitely be mindful of future care/benefit needs here. You could speak to your welfare rights team for advice, that of course only offers advice on the current benefits and they may well change or have conditions altered by the time your DD reaches 18, but it could still be helpful as a starting point. Saving it isn't always the best option. You say you are saving 'not because you don't need it, but because you are worried about her future' - you need the money, it's probably better all round to use it. Saving for years could result in it disappearing very quickly when she turns 18.

If they have savings it can mean their benefits stopped when older. Over a threshold.. Can't afford remember what it was however...

I'm not sure of the ins and outs..

I would definitely save something... If you can.... But don't worry as pp said the provision is free based on need but in wondering why you don't get the highest one!

At the moment due to Covid lots of people aren’t spending on things they normally would do. For your DLA claim, you would have had to state what she is unable to do, and the money is supposed to be used to pay for ways to address those things. So, as has been suggested, speech therapy session, play therapy, water therapy, all would be beneficial for your daughter now and throughout her life.
I assume all your income is in one pot and out of that pot you save a substantial amount. But please don't just save for her future. You have 2 children. Also, taking out a loan when you have savings is really bad financial management. The loan will cost you much more in interest than the savings will gather. Use those savings to pay off the loan. If, in the future, your dh loses his job again and you have savings over a certain amount, you wont be eligible for benefits, until those savings are brought under a certain level.
I would be looking at what your child needs now and in the immediate future - for example you may benefit from a bigger house if she would need a bigger bespoke space to play in, therefore saving now for that makes sense. But please don’t make your lives miserable by scrimping now - both your children should have the best life they can have.
As far as holidays go, there are many excellent places that cater really well for children with additional needs. It may be good to do some research and start planning a lovely holiday for your family.
My final advice - referring to your daughter as ‘the child’ makes it sound like she’s an object - the car, the dog, the garage. It’s an odd way to speak about your own child. Are you struggling to bond with her? Do you have support for your emotional needs? If not, I’d seek it out. Not every parent finds it easy to accept that their child has a disability and yet they're expected by society to just get on with living. If you and your Dh are finding it hard, ask for help. It’s out there.

Slightly off the point of the thread, but why only middle rate care for a severe non verbal child? I think you are entitled to high rate care allowance and possibly high rate mobility. You should look into getting a reassessment.

For your DLA claim, you would have had to state what she is unable to do, and the money is supposed to be used to pay for ways to address those things.

There is no correlation between ability and what you are 'supposed' to spend DLA on. None. It's a made up condition by people who don't have a clue what it's like to actually need to claim disability benefits. Just the same as the one OP initially posted about thinking she had to spend it or she would lose it.

If DLA is granted it is not for anything specific and you are not 'supposed' to spend it on anything in particular.

Why not spend some of the DLA/carers, and save some of your husband's salary instead?

It'd work out as the same thing, but you could more easily justify buying what your child needs.

@smartiecake

Slightly off the point of the thread, but why only middle rate care for a severe non verbal child? I think you are entitled to high rate care allowance and possibly high rate mobility. You should look into getting a reassessment.

High rate care is only given where there are substantial night time difficulties and care needs. Not all non verbal children with severe day time needs have night time needs. It is purely the night time needs that make the difference between mid rate and high rate.

My son has severe autism and a diagnosed sleep disorder. He sleeps 2 hours a night, is dangerous at night and is on sleep medication. We get high rate care.

My friends son is non verbal and has severe autism - social workers involved as such severe meltdowns needs restraint plus 2-1 care, but sleeps 7-7. He is on mid rate care.

Thank you all for such positive and supportive responses. Just wanted to add a bit of more information.As most of you mums have rightly suggested, I could use the amount for therapies and outdoor activities but the problem is the child does not support to any of these. After quitting my job, I took her to India(that's where I am basically from, a British citizen now) for therapies as they are readily available there and we don't have to be on the waiting list unlike here. All we need to do is pay and you can have sessions everyday. I stayed over for 4 months taking her to therapies (speech, OT, behaviour). (She hasn't started school by then). This was when we did not receive any DLA or carers.

If the savings are in your child’s name when she turns 18 if she has over 6k in the bank she will not be able to claim benefits such as ESA / income support in her own Name

Sorry, posted it by accident before typing the entire message and couldn't edit.

So, for four months I took her to therapies on and off (she wasn't cooperating) but with no use. She doesn't sit still even for a minute. Then decided to come back to the UK when. I received a letter from SALT. She was equally unsupportive here as well. Tried to take her to swimming, outdoors, theme parks but she never seemed to engage in any kind of activity for more than few minutes. After sometime, she would get agitated and will kick, last out and have severe meltdowns. Even driving is very stressful with her. So we try to be at home where she is relatively calm.

At home I try to provide activities like water play, play doh, swing, trampoline. Even in these activities she will play for a very short while and start messing around. For instance, when I let her play in the bath, she will play for a bit and start to wee in it and also drink the same water😔😔.

Dad had/has to sit in the car or garage several times to do his work or take calls as it is very difficult inside the house.

The mainstream school SENCO said that she has not seen such a complex case in her career as my child is very hyper, running, jumping all the time. She has no cognition or understanding of anything. You can imagine the severity when even a special school was reluctant to take her given her complex needs.Another special school has accepted her and She only started this January.

That's the reason, I can't take her to any therapies and outdoors. When I said, saving for future, I meant if she needs to be placed in long term care(after us). I am guessing they are very expensive. Throw some light, if the government has to provide such care. Obviously I don't know a lot about the system here, I am learning gradually.

Sorry for the long post but this is very little compared to what we go through on a daily basis.

Can i give the savings to my other child when he is older so that he can spend on his sister when required? Mainly for long term care. Probably that's what I can do because she probably needs a consenting adult as she can't do it on her own. She has a diagnosis of Intellectual disability, far worse than learning disability 😔

Sorry to hear things are so difficult for you OP. It might be worth enquiring with your council if they have a respite service (in our area it’s called a short breaks service). We’ve recently been assessed and we’re getting direct payments to fund 1:1 swimming lessons for DD, but they also provide playgroups for children with complex needs, to give parents a bit of a break, and I believe even will fund short breaks for the child to give the family some respite.

I am not sure why my replies are shown as a new message, not as a reply to someone.

One of the mums has suggested that we need to plan holidays. Yes, thats what we are planning to do once this covid things get settled. But it has to be myself and my son(NT) or Husband and son because my daughter cannot cope with holidays and outings. We decided to do it, so that our son is not suffering from the family circumstances and he should not be deprived from holiday time.

And the same mum was saying that I was referring my daughter as a child, its not because I fail to have a bonding with her. By now, you guys might have learnt that I am not a native British or an English speaker. So, such things happen when a language is not your first language. I dint know, it sounded like an object. I would not do all these and worry so much about her if I do not have a bonding. I am not even visiting my family in India because, she is unable to cope with the journey and so many new people back home.