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 and this is the type of benefit that the government talks about wanting to reduce, but their MPs mostly defend it because it makes them popular with certain voters and the poverty / disability lobby.
And this is going on at the same time as out national debt equals our GDP. And we spend ever more just on the debt interest. Crazy.
(I voted for them incidentally, but regret it. They're hopeless.)

Yes but the term disabled is very broad. There’s a big difference between someone in a wheelchair or a severely autistic child and someone with mild adhd

someone with 'mild adhd' is unlikely to get much (if anything) by way of DLA unless that affects their day to life to a fairly significant degree. It's not the diagnosis that determines DLA it's how it affects the person's daily life, their quality of life.

Scope’s research looks at disability as a whole.

Unless you live their lives, no matter how close you think you are, you can’t possibly judge. Currently, in order it be diagnosed with autism, the impairments must be clinically significant (DSM-5) or result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning (ICD-11). Difficulties that meet these thresholds aren’t mild. DC don’t get DLA just because they are behind at school.

I would also add that people on the outisde of a family rarely to never really see or understand the amount of input that might go into a child or other family member with a disability. They see the good days, not the every day.

My older DS might be seen to function. But he does not really function independently. It requires so much effort to get him through the day. I avoid social events with friends and family when I know it's going to be too much- so they see him on a good day. I might say to a friend that yes- we CAN go to a pumpkin carving event in 2 weeks time. Yet i know it most likely will not happen- and tbh the stress of managing him in order for him to even attend such a thing will be so labour intensive. If we get there, they won/t see that. They see the mask. The best case scenario.

We went to visit my home country in August. It took nearly 2 years of solid preparation to get my child on a plane. When we got there his grandparents said 'Oh! he travelled so well- what were you worried about?'.

I was - and am- fucking exhausted.

Tell me you know sweet FA without telling me.

I don’t for one moment believe you have a disabled child. I think you are just a disgruntled tax payer clutching your pearls about disabled children and people getting financial support. If services were funded properly we wouldn’t need to.

Oh and I can tell you right now that the waiting list for ASD/ADHD assessment in my area is at least 24 months and nobody (not even an MP can influence that).

In the meantime bore off and haunt another thread why don’t you!

Taxis - great, but add in 'can walk but it hurts, can walk but can't stand around for undetermined time for bus to arrive, can walk but noise is distressing, can walk but can't see or understand the bus number, can walk but won't be able to get off the bus if it's crowded, can walk but can only manage if there is a guaranteed seat, can walk but is tired, can walk but will be too shattered to do anything by the time of coming back'

Private physio, etc - great. Also useful for things like bandages, supports and something to make the session better/possible, such as a swimming costume, towel, nice hair products and a comfortable pack to carry it in.

Footwear - not just specialist, it's highly likely that footwear will be intrinsically more expensive, as you can't get a cheap pair from Shoezone if you need to have wide fitting, enough space for orthotics, non slip soles, cushioning or built in arch support. Even trainers need to be higher cost due to the need to not be crappy fashion ones. And cheap synthetic socks aren't always suitable, either. Add in clothing - they could go through more, need comfortable fabrics, easy clean, maybe specialist sportswear, compression leggings, gentle grip socks, seamless socks, footwear that can be taken off without bending down.

Transport to hospital appointments - fine, see the first point.

Adapted equipment - that should include things like a decent mattress, memory foam topper, acceptable (and indestructible/easily cleaned/ inbuilt carrying strap, etc) water bottles, the more expensive and comfortable backpack.

And food - you forget that the dietary needs of a disabled person could be different.

And frankly, if somebody has to pay out for a more cushioned carpet for warmth or comfort, more expensive curtains to deal with light affecting sleep, buy a sunrise alarm, hard flooring for dust reduction, a level surface or an easy clean one, a steam cleaner or anything else in the house that might make that person's life slightly less uncomfortable, that's up to them, not somebody making arbitrary rules about what they think should be the only permitted spending.

The issue is that DLA doesn't usually plug the financial hole left when a parent is forced out of employment. DLA and carers allowance combined are usually just a fraction of what a full time salary brings in. As a result, many families are forced to use DLA for general household expenses as it enabled them to have a parent at home (which is more often than not the main cost of families with disabled children - loss of income). We are guilty of that. What good is it defaulting on the mortgage or not feeding the DC proper food because it makes a family guilty of using DLA toward 'general' expenses. How do you propose families are supposed to financially cope when carers allowance is just £2.37 per hour (assuming the parent is caring for 35h only, in reality it is often far more???

You seem to be working with families with disabled DC since you talk about 'caseloads'. Your ignorance it's shameful!

noone with 'mild adhd' will get DLA. the thresholds are incredibly high and it's (despite what the daily fail will want you to believe) very difficult to get.

This nonsense here is why the public finances are in such a state.

I will get flamed for this but I have an ASD child (with EHCP) and applied for DLA as was advised to by another mum at a very middle class school. I could not believe how much money we were given, including a mobility allowance which made no sense to me as DS at age 7 could walk and ride a bike.

He had social issues but no mobility challenges. I filled out the report honestly with no exaggeration, using a typical day rather than fraudulently using a worst day. But the system was shockingly generous.

In terms of extra costs, he costs much less than his sister as he has fewer hobbies. We stopped claiming after a few years as I couldn't morally justify it as we are high earners and he costs us less.

Fine if your child is like Ivan Cameron, but otherwise, for ASD and ADHD there should be no cash payouts and instead access to therapy.

@JustStopItNorasaurus Are you definitely out of time to go down the legal route? The time limits are different for children, and for adults who don’t have capacity to manage their own affairs.

I believe it was 6 years after realising there was an issue.

But I can look again, certainly.

I have a child with severe ASD and severe cognitive impairment, none verbal at 4. EHCP, special school place. it took a year and a tribunal to get DLA. The buggers wouldn't even award low rate care for a very, very disabled child. In the meantime, I had to give up work, borrowed and forked out thousands for therapy. If your child wouldn't have severe and complex issues, you wouldn't qualify for DLA. How did you pay the bills? I suppose you had to give up work? is the cost of not having an income not a monumental one even if you don't have other associated costs? if you feel your child doesn't need much help, why would you even apply?

So thats your situation. And if you were "shocked" just end the claim....? What you're saying is you don't think your child should have qualified, and by your reasoning all other children with the same diagnosis must be exactly the same as your child so their parents shouldn't need to claim either..?Is that your point? Incidentally the mobility descriptor does not exclusively cover physical movement- it also assesses any supervision and safety difficulties, lack of danger awareness, etc.

The mobility component is about far more than the physical ability to walk, run, jump, ride a bike.

My son only goes mornings at nursery due to being probably autistic. DLA would be great to cover the loss of wages!

So why apply for it if you were so morally against
As I'm sure you know it goes off need not diagnosis if you don't think your child has significant needs the chances are he probably wouldn't still be eligible for DLA anyway

Makes me wonder why you went through the hassle of applying for it in the first place, despite whatever middle class mummy advised you to do so🤔

Just because your child and family didn't need that money doesn't mean others don't. By all means don't claim it if you don't need it. Many others with children with ASD or ADHD definitely do need it.

You may not want to go down that route, but you may have the option. It’s 3 years from their 18th birthday as a rule. https://www.thompsons.law/support/legal-guides/time-limits-for-medical-negligence-claims

I filled it out honestly and hadn’t anticipated being awarded as much as I was when I started. But as I worked through the questions I really started thinking about how much time, effort and yes - money - we spend on helping my daughter. I think I just got used to it and stopped noticing some things. It just because second nature to be woken up several times a night and get up an hour early to have time for the clothing meltdowns and spend hours scouring the internet to find the exact pair of shoes which are the only ones she’ll wear. I hadn’t quite realised how much of this was unusual until my son got older and I experienced raising an NT child.

Ds is nearly 16 and because of his needs is wholly reliant on me. He can’t be left home alone even for a few minutes. I have to work reduced hours so I can do school runs because he couldn’t walk the short distance home (safely or physically manage it!)

I think until you have lived it then you don’t realise how much things add up (or how much is lost by reduced earnings). Just small things like today he needed to get new glasses - to get the right ones for his sensory needs I had to pay extra, then I had to pay for a second pair because the risk of him breaking one pair is high and he can’t see without them. (We also paid for thinning but that is a cost that many will have to pay). I would love to have been able to pick one pair in the price covered by the NHS voucher!

She doesn’t need to apply for PIP until DWP write to her to tell her she must apply. If she does it before she receives the instruction from DWP she will lose the transitional protection the provide when migrating child DLA claimants to PIP. There are also plans to raise the migration age from DLA to PIP from 16 to 18. PIP is a much harder benefit to qualify for and child DLA claimants need to wait for contact from DWP before doing anything.

I smell 💩

PIP is a much harder benefit to qualify for

This isn’t necessarily the case for rising 16s transferring to PIP. For example, the statistics released in October 2024 showed 56% of rising 16s moving from DLA to PIP were awarded PIP at the highest rate (enhanced daily living and enhanced mobility components). Only 8% of the same individuals received HRC/HRM DLA.