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

"So complain and make things improve. Email your MP. I emailed my MP and all of a sudden my child’s ASD / ADHD assessment appointment came within the month. Don’t be fobbed off."

You got lucky. When you have more experience you will see that. If only all law breaking by LAs was solved by emailing an MP.

I know, despite it being repeatedly mentioned in this thread. Late comers who haven't read the thread or actually have jumped in to a topic they know little or nothing about, and a couple who because they think all children are exactly the same as theirs think others shouldn't be claiming in the first place. I've repeatedly said, I do not have a disabled child, but for over 10 years have worked in a field supporting those who do. I also care for a disabled adult. Therefore I have a real issue with some of these posters. I have seen the parents who try their best for their young person, I've seen the effect of sleepless nights way beyond "the norm" of having children, the fights for support, and the trauma when I take them sometimes to tribunals to fight for their children.

I am DS appointee. That means that legally it is my responsibility to ensure that the money received is used in his best interest but ultimately it’s my decision how it’s used, the money is paid directly to me and will be for the foreseeable unless something changes whereby he is able to do it himself (I would love it to be the case one day!)

Good for you...your medal is on it's way.🙄

Blame the way those of us on pip are assessed. There's no reason why if people were assessed properly, (they claimed I could drive; my parents were told when I was a toddler I'd never drive which is still the case over 30 years later) 70% go to tribunal and win

I also can't think of a reason why we need to reassess people. I'm due to be assessed soon which is going to be pointless

I also can't think of a reason why we need to reassess people. I'm due to be assessed soon which is going to be pointless

I personally think that the way the assessments are done, needs urgent consideration. Of course some people will need to be reassessed at some point, if long term claiming. For other's it is a complete waste of time, doing countless assessments, for certain severe conditions, that will not improve, no matter what. The stress, energy, time, and money spent doing so, is just another factor in the clogging up of the system. Maybe if these MP's sat down with disabled charities, and disabled members of the public, and listened to them, for once, they might actually make a meaningful change to the system, for the better.

Very few parents will be able to ring fence the money. It’s also not supposed to be for paying for private therapies because the NHS is in such a dire state, although if you can afford it that’s fine. But most parents of disabled children are struggling to care for their children and struggling to be able to work due to their child’s needs. I’d hazard a guess that the majority of DLA goes on food, rent and heating.

This change is actually under way. For those on the higher rates for more severe, long term or permanent conditions which are unlikely to improve there are already open ended awards with no review date. In these circumstances it’s proposed that the claimants will not be asked to compete review forms, but a ‘light touch’ review will take place, checking with GP’s and other HCP’s involved with the claimant to make sure nothing has changed.

I think the problem lies in the fundamental flaws of the present assessment process. It’s supposed to be objective and consistent, and as far as I can see it’s anything but that. I’ve seen many cases where claimants’ own medical evidence at consultant level has been ignored in favour of assessors reports which are in direct contradiction. And assessors are mainly nurses, physios, paramedics etc, not doctors. I don’t know of any other area of medical assessment where this would be tolerated.

I’ve also come across reports where there is a whole page full of measurements regarding joint movement, reflexes, angles of flexibility etc, without the assessor ever going near the claimant, let alone touching them to examine properly. This has been picked up a lot at tribunal level but it still seems to be happening. In one ludicrous example, a claimant was described in the report as being able to flex both ankles normally and the degrees of flexion were given in detail. The only problem was he had an artificial limb on one side, and the other was a club foot for which he had had surgery to fix and stabilise the ankle, which was immovable. I’ve also seen several instances where the claimant has a congenital condition or birth defect, and the assessor has asked how long they have had it.

Until we have a fairer and more transparent system of assessment and more accurate awards I don’t think there’s much hope of reducing the disability benefits bill. An enormous amount of tax payers money is spent on appeal tribunals which are successful up to 70% of the time and yet no action has been taken so far to look at the reasons behind that, despite it being a clear indication that something is very wrong.

I’ve come across this on occasion too, and it would have been reason for you to make a complaint. Driving ability isn’t directly assessed for PIP. Where a claimant can drive, the skills used to operate a vehicle are taken into account to assess ability in areas which use similar skills, and any adaptations to the vehicle or special equipment used has to be taken into account. It’s beyond the remit of an assessor to determine whether you are capable of driving or not.

Thanks for your post@Rosscameasdoody, explaining about open ended awards, etc. I agree absolutely with your last paragraph about the assessment, and appeals situation. I cannot understand why they are not being scrutinised, and overhauled, frankly. There are substantial savings that could be gleaned there.

Completely agree. My PIP assessment was a joke, it was via a call and I could have said anything. In the outcome letter it just quoted things I said.

I think they could just request a copy if a recent consultant or therapy report which evidences that the persons condition has remained the same, rather than completing a full re assessment. The other crazy thing is that initial pip form can be completed online - which helped me as I can't write much due to hand pain - but the reassessment form had to be written - what makes them think I can now magically write!

In my case it's because I'm visually impaired so it's relevant. I had an eye test carried out at my assessment which contradicted the claim it's a choice for me not to drive

(And that's without going into the complex reason why for me it's not just "you've passed the eye test, you can now drive")

Agree. I think for those with no experience of disability there’s a fundamental misunderstanding of why disability benefits are paid, little or no knowledge of how claimants are assessed, and an expectation that the money can only be used for ‘disability things’ which is not the case.

It’s accepted that significant disability results in extra costs in everyday life - that’s why the assessment is split into mobility and daily living activities to give an overall view of how much extra expense the claimant is likely to face. It’s paid as a cash benefit for a reason - because disability isn’t one size fits all, and the disabled person themselves is best placed to decide how to spend the money to support their needs. Those who have no experience of disability are never going to understand where those costs lie because they have a fixed idea of it having to be spent on wheelchairs, zimmer frames and the like. As an example, incontinence is something that presents across a wide range of disabilities - does it never cross people’s minds that this will inevitably result in higher utility bills because of extra laundry/bathing. Then there’s personal and bed/furniture protection, which is only available on the NHS in limited and strictly assessed circumstances.

In the case of child DLA I don’t think it can be said often enough that it’s one of the most difficult benefits to secure. All children need care and support. But to qualify for child DLA it has to be clearly demonstrated that the needs of the disabled child meet the threshold for being significantly above the needs of a child of similar age without a disability.

These topics inevitably turn into benefit bashing threads, mostly driven by people who don’t know what they’re talking about because they lack the experience, those who just jump in because they see an opportunity to voice ignorant bullshit, or the significantly wealthy who simply can’t grasp that they may not need the money, but there are others for whom it makes a real difference to the very difficult lives they lead though no fault of their own. Threads like these make me sad and fearful for disabled people and their families.

I think you’ve hit the nail on the head. The bill for disability benefits doesn’t just reflect the cost of the benefits themselves and the administration. It also encompasses the cost of assessments, reassessments, appeals tribunals etc. The assessment processes haven’t been fit for purpose from the start and the whole system is in need of urgent review if the government is serious about saving money.

The online application process hasn’t been rolled out to all areas yet, so I can’t see the review forms being added to the online facilities any time soon. I retired a while ago so hadn’t seen a review form for some time until a friend asked me for help in completing one. I was quite shocked to realise how many changes had been made. Instead of the previous straightforward enquiry as to what, if anything has changed since the last assessment, it’s now pretty much the same length as the initial application form and asks for the same level of detail. All of which they already have.

It’s really concerning that they would claim that if you had evidence to the contrary. One of the aspects of the assessment I find most concerning is that in many cases the assessors’ report takes precedence over consultant and other specialist reports provided by the claimant, even when they’re in direct contradiction.

I think these are great points. Often disability benefits are used to provide comfort for the person that they wouldn’t otherwise be able to afford. I don’t know a single person IRL who would have a problem with this. I also think those who don’t come into contact with disability in any way, are not familiar with the exorbitant cost of disability equipment. A simple plastic lifting or grabbing device can cost a considerable amount, never mind the mind boggling prices of wheelchairs to take people beyond the bog standard NHS provision, which in many cases isn’t suitable or comfortable.

The other difficulty with child DLA/CDP is that as parents you grow to adjust your parenting to the needs of the child you have.

You often don’t notice how much extra care your child needs because you simply adjust your parenting. I know for me it wasn’t until I was on holiday with other family members I realised just how much I had to adjust to my DCs needs. My sister at one point asked whether I ever accessed respite care - having watched how much I need to scaffold and direct both kids in completely opposite ways, how much support they need and how little time I had for household tasks. For me it was just life, including both kids being up and needing supervised at different times during the night.

It’s not until I sat down and completed the paperwork I realised I was giving much more support than other 8 and 10 year olds needed, and how bloody worn out I was trying to sustain a busy job, advocating for their health and education needs and actually caring for them. DLA helps ease the pressures in numerous ways not least because some things I can throw money at.

Illustrates the point perfectly.

Yes exactly. As I said upthread I just cried all the way through the DLA application because we just naturally developed our parenting to deal with things and did not realise how disabled and limiting DS1's life was. (Actually, the sheer ease to parent a second younger child without was the first eye opener).

I took me 8 months to actually fill out the form and send it off. I found the whole experience so traumatic. And I'm a professional bureaucrat in my former life and filling out forms is daily bread and butter!

DS1 is 15. This evening I made a lovingly prepared dish and when bringing it out of the oven dropped it all over the floor. It's smashed to smithereens. DH has just looked at it in horror while I am white and said 'I'll go and explain it to DS1 that this has happened, and he's not to worry, sometimes these things happen...' In other words- the sheer amount of effort to manage a normal situation is something most people take for granted but for us is going to completely disregulate him, make him distraught and we will be dealing with the fallout for the rest of the night I think. You don't even realise how much you have to put in sometimes with sheer effort. Parents of children without disabilities often have no fucking idea tbh. (As demonstrated on the thread).

Fully agree on the extras you just don’t realise.

Before leaving for work this morning (at 8) I had unpacked the feed delivery that had arrived the evening before (was too tired to empty the 13 boxes!), done his morning feed and then set up the one for school, packed his dinner and made sure his school bag was packed, done his physio (muscles and respiratory) and made sure he was dressed and ready to go. I also found a few minutes to get myself ready for work.

Tbings have calmed down for us now hence me being able to work but there is still a lot of extras that you wouldn’t normally be doing for a nearly 16 year old!

We don't (yet) get DLA (because I'm massively struggling with doing the forms) but with two autistic DC with varying sensory/food/school/emotional issues you bet my costs are higher than average for their ages.
I've had to reduce my hours at work and work much more flexibly than my company are really happy with and every single day is bloody hard.
And I still know we have it easy in comparison to others.

I sank an entire bottle of red, whilst dictating the DLA form to my then husband, both of us sobbing.

Massive hugs. I see and hear you.

Copilot is your new bestest friend. Seriously.

Just download it and then pretend it’s your mate and boom. Forms filled. Just cut and paste.

@Hollowvoicestart a diary for the next week. What care you are giving at different times.
It can help focus what help you are giving and you can include in the submission.

The charity Cerebra have a really good guide, it helps you identify the areas that your child needs additional support and where that fits in the paperwork. It really helps to frame your thoughts and is worth using, just google Cerebra.