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

yes similar. I also feel like my child deserves compensation from the NHS as his birth was appallingly managed which led to him suffering a brain injury at birth. We were reeling afterwards and never tried to obtain legal help. And now out of time as well so it is a non-starter. His life could have been so different and the grief and anger is real. Lord as anyone who applies for DLA knows the process is intense. I cried all the way through it as having to write down each and every way his life is affected was literally laid out on the page in front of me. I'd spent 13 years just getting on with it.

So he now gets £412 a month. Big deal. His nearly did not survive medical incompetence. God knows what his future will be like and I am so scared for it. Plus his younger brother's life has been irrevocably changed- our lives as a fmaily are often centred on DS1's very real needs. That changes everything- where they go to school. Where we live. What we do at the weekends. If DS2 can have friends over or not.

It can be all-consuming.

This, PIP goes to the child unless there are a few limited reasons it's not possible. But for the majority, it will go to the young person. I don't think it's a good system. One of mine has no money handling skills, is impulsive etc (but no learning difficulties). some of current DLA award is spend on mortgage and food (I can only work very reduced hours due to my caring responsibilities) and DLA enables us to some extend to keep a roof over our head as I cannot go out and work full time and have a career. DC will soon be 16 and I do worry how we are going to cope. I think at 16, it would be better if parents are still in charge esp if the young person is living at home and largely provided and cared for by the family.

I wasn't aware this post would cause so much debate.

I give her 'pocket money' out of it as although I am her appointee because she is impulsive with money and struggles to understand its value, it is technically her money and I don't want to take it from her completely, she struggles socially, and is currently unable to attend college or any extra curricular activities because of this, despite her really wanting to. The £25 is so she can still go out and socialise with her only two friends outside of an educational setting. This is obviously not only has a good effect on her social skills/confidence but it's been really good for her mental health, which has been in a bad place before. Before the DLA, we were struggling and in debt, and this has helped me to do this for her.

As for cahms we have been referred there multiple times and always rejected for whatever reason. The NHS won't send her to any therapy or OT and the private one she needs is out of our price range even with DLA and unable to travel to.

Our CAMHS offered one thing - CBT therapy. DD went through it 3 times and it actually caused more harm than good.
She was offered some ‘talking therapy’ when I pulled her from the last round of CBT but she would also find that distressing. Sometimes they just don’t offer anything helpful. What she needed was time and more support at school, which they couldn’t afford.

Part of DDs DLA/PIP is covering the costs of me being available to her and not being able to work. I had a good job. She spent years in school on partial timetables which included split days. I’ve had to go pick her up numerous times because she’s been distressed, picked her up from school trips because she’s not coping etc.

I’d much rather work and have a pension growing.

But often it’s an additional income because other means of obtaining an additional income aren’t there. You can’t always work if you have a disabled child or you can’t work to your potential. That drastically decreases the income into a household that has higher essential outgoings than many others.

Does DD have an EHCP? Therapies can be included in there, although you may need to appeal to get them included in F.

I’m too ill right now to argue eloquently but @Firkinflea seems to be on a wind up.

nobody should need to justify what they spend their DLA/pip on. If they weren’t entitled to it, they wouldn’t bloody get it. It’s a 35-page application firm; I’ve printed it for my dc but haven’t found the energy to fill it in!

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/ This should help 👍

Nobody has to justify what they spend their child's DLA on, tbh. It seems to make no difference to some people who have an issue with it, no matter how it is spent.

Thank you 😊

You're very welcome. Try to attach supporting evidence if you have it, and there is a section where a teacher or 1-2-1 from school can write a statement.

Any standard costs which any child would have - food, clothes, getting to school etc are not supoosed to be covered by DLA. It covers costs higher than standard - for example several children I work wurh get DLA for physical disabilities. Some of the things they spend it on include

• taxis if unable to walk to bus stop
• private physio or oher therapies
• specialist footwear not covered by nhs
• transport to hospital appointments
• hospital parking fees
• adapted equipment such a specialist trikes or wheelchairs not covered by nhs

Basically it should fill the gap between standard nhs/council provision and what the child or young person needs to be as independent as possible. For each person thsts different so it's done as a payment rather than provision as they are their family should know what they need the most.

Just a thought there are loads of mh teams privately who work on line? Is a zoom session manageable

can she use the money on a hobby which provides skills to one day lead to work- such as horse riding or animal husbandry?

Yes and no.

We have children on our caseload where they do need specific things which are usually covered by DLA, but the family has spent it on general spends and then the child isn't getting what they need. For example, a child I see wears through a pair of trainers every week or 2 due to their disability, and the family should use the DLA to replace them but doesnt, and he is getting wet and sore feet due to holes in his shoes.

It doesn't sound to me like she doesn't need DLA. It sounds like OP is using it mostly as intended and is questioning how much she should give control of benefits that are intended for her daughter when her daughter is 16. Surely this is just a moment to reassure that the way she is using the money is sensible, and no she doesn't need to give her daughter more of it as spending money (which I'm sure most teenagers would suggest!)

OP, If anything I'd just try and get your daughter involved in talking through the budgeting and what it is needed for, as that might help prepare her long term , although she still might need help with money management.

My 17 year olds PIP (previously DLA) just goes into the family pot - or rather my bank account. She doesn't have her own account and I am her "nominee" (I think it's called).
I've never really thought "oh this pays for this, this pays for that". It's one pot.

@Bushmillsbabe
I expect DLA doesn’t cover 4-5 pairs of trainers a week on top of whatever else that family goes through with management of family costs. Even if it does it’s not really fair to describe their situation without them being able to comment…
Every situation will be different- but the amounts awarded are done so in a very standardised way.
I have a physically and intellectually (and nonverbal etc etc) child.
One month her additional costs might be very little and the next enormous.
She’s cut off from physio sessions by the NHS because she hasn’t got a formal diagnosis for her physical condition/s even though it’s in her EHCP because no-one knows what to do with her safely. I used to take her to private physio but can’t afford it any longer.
All her mobility component goes directly to Motability.
I can only work in term time jobs as there is no form of childcare to care for her. My husband is self employed and has a variable income. Not more than £32,000 a year.
I couldn’t work at all for 6.5 of her 8 years being alive.
I’ve lost my £50,000 a year income firstly because I lost a baby at full term and switched roles to try to go through IVF and gave less travel and then completely lost income when DD was born.
There are so many hidden costs as simple as petrol to appointments or to places that she can sctyaccess and be safe or engage in something.
She gets incontinence pads from the NHS but it doesn’t cover her needs. A pack of pads (14) is around £12 on Amazon. Regular shops don’t stock them.
She causes at least one wash load per day - I won’t detail why but there’s washing and drying costs incurred of course.
Things like buying the correct fixings for her wheelchair in the WAV.
The big spends can be like next year down payment of around £5,000 for a WAV as the lease is up. £18,000 upwards for a powered wheelchair whenever we find a suitable one for her needs.
No idea where I will get those funds but I will look for charities (usually means tested and as I don’t receive UC we probably won’t be eligible).
Train and taxi trip to Great Ormond Street Hospital- well over £100 every time.
I can’t even contemplate buying Eyegaze technology for her to try to get her used to it - it’s another £10,000 upwards investment that might not work.
i can’t afford to buy her the “guided hands” invention that might help her because I can’t afford to spend £600 plus on something she might not use (through aversion or inability).
The obvious thing to say is .. but this is do different from the spending money issue the OP mentioned and yes it is. But that’s the way the government has set it up - parents determine until age 16 and onwards if appropriate what costs to apply the money towards. It could be ultimately it’s don’t on carers for independent living and so on - just because it looks superficial or superfluous now doesn’t mean those costs don’t come around the corner - for the family - very easily (especially if a primary carer gets ill or dies).

No one would argue that it is in any way an acceptable thing to happen to that young boy, that you have mentioned. Obviously you know about the ins, and outs of the situation, regarding whether he needs specialist footwear that would withstand, whatever is causing regular footwear to wear out so quickly, etc. My point was rather, that some people will still see it as the parents responsibility to provide for their child, no matter what the circumstances, and would not be satisfied even if it is being spent on medical themes. That has just been my observation, from some posts on threads like these.

@Overthemhills if physio is detailed, specified and quantified in F of the EHCP, as it should be, it is the LA’s responsibility and can be enforced. Independent provision can be funded. Have you sent a pre-action letter?

Eyegaze technology can also be something that is included in EHCPs. Equipment and other tech can be too. Although you might have to appeal.

Maybe the DL doesn't stretch far enough for all the disability related expenses

It's more like 2-3 a month which are needed.

As a physio we wouldn't cut a child off purely due to not having a diagnosis (appreciate areas do vary though). We base it on 2 questions - 'is there significant potential for improvement in functional mobility skills by having physio' and 'is there a high risk of deterioration of posture or functional mobility without it'. If we can answer yes to either 1 or both of these we keep on our caseload.

As someone has said previously, if physio is essential to access curriculum then education should be funding, again, I know this can be easier said than done.

Re eyegaze - your SLT can refer to augmented commuinication team at GOSH for a trial, and sometimes they can loan one for a few weeks to practice with to see if worth pursuing long term

DS aged 18 saves a little of his ADP and spends the rest on a sport which helps with his disability, helps him with driving lessons too, to become independent. And any small costs which help him emotionally like buying CDs.

He was awarded a high rate for a very good reason and has medical reports to prove it. It's not just dished out willy nilly!

OP that sounds about right. As long as she's saving part of it. DS has been taught this too.

Edited to add DS has spent a lot on counselling fees with his ADP too. So it has therapeutic use primarily for the person to cope with every day living.

Given Scope’s disability price tag research shows disabled households need an extra £1,095 each month on average to have the same standard of living, 2-3 pairs of footwear on top of other costs may not be feasible.

When considering if physio, and other therapies, should be in F or not, the question is whether it educates or trains. Not just whether it is essential to access the curriculum.

This.

@Bushmillsbabe
Re the trainers - fair enough! The family should prioritise them and I’d hope they’d see that.
I hear you re the physio - that’s the reason they’ve given me. To be fair my daughter is very complex because we don’t know what underlies her problems and therefore it’s not clear if physio would help or hinder. I won’t bore you with the details but we’ve encountered problems with things we’ve done physio/OT wise and can’t tell if the problem is because of a condition or because of what we tried.
Re Eyegaze - the NHS won’t let her trial it. Not until she shows some evidence that it’d be worth them investing in it (also we are in a satellite area for GOSH). I tried via a private company but the trial couldn’t work because (this is the sort of thing that wears one down) it was so cold their equipment wouldn’t turn on. They promised they’d come back .. one year and a couple of requests from me, still no appearance.But this conversation has reminded me to try again.
On top of the other things I need to chase (her consultant, her dietician and that wheelchair). The joy of being the parent of a disabled child! (Despite the many highs there are all the little irritants and issues)