Facebook DLA group feels uncomfortable

[Furrzu]

My son has additional needs and I am in the process of applying for DLA. I have very little money and would be grateful for anything extra. I'd use it to make a sensory space at home for him, some clubs and for anything else that would help him. We've had a sensory profile done and there's a long list!

I joined a DLA Facebook group that has close to 150k people in it. Honestly, it's very uncomfortable. People posting about whether it's OK for them to use their backdated pay for a family trip to Disney. People going to tribunal to get high rate mobility because their child has flat feet and has to wear insoles but they're worried their child won't get it because they play football, so advised by others to omit this fact. Whether they can save the DLA and ask for UC to not class this as savings as they're saving it for their child for uni.

It's actually made me quite angry but not sure if I am BU. I only wanted advice on filling in the form as it is long and daunting!

So, AIBU? Is this a widespread issue?

I know, I should probably mind my business...

I'm on DLA groups and haven't seen this at all.

The "worse" I've seen is those fighting for HRM yet their child can walk and isn't severely mentally impaired or ticks any of the HRM tick boxes.

Yeah I have seen that loads of posters insisting their child meets the criteria for HRM under SMI ,it makes me cringe because when you read their reasons it's abundantly clear their child doesn't, i don't think most people realise just how severe children have to be to get HRM under SMI ,my son gets it and hes in a special school for children with severe and profound learning disabilities, he's 14 ,non verbal, extremely challenging behaviour, working at pre school levels etc ,etc.

PIP is meant to cover extra costs- but sometimes there are no extra costs 🤷🏼‍♀️it’s that simple. It can be for SKY tv packages, heating, lighting, carers (though these are often supplied through an LA).

We've come across pensioners in their 90’s who have saved it all their lives as they have no need for it. But they can’t and won’t not claim it, what I don’t understand is why they carry on claiming housing benefit and council tax benefit when they aren’t entitled to it- doesn’t make any sense to me. They incur massive overpayments, which are then recovered. Their defence is it’s for my funeral, like that’s some funeral!

I’ve helped a colleague claim it, partially sighted/ blind in the other eye - she works full time . The money has gone on updating her home. Her transport costs are covered from another pot of LA money. I’d rather have my sight than any sum of cash.

There will always be people that take the piss though, it’s human nature. Don’t think about it lol

@x2boys , i totally agree , my dd15 is at a special school , she does key stage 2 work , she is absolutely no where near meeting the criteria for HRM , and I wouldn’t embarrass myself by applying.

We are high earners but we have been advised to apply due to the other doors DLA can open for support. Not decided yet.

I'm not on this group. I have no doubt there are people going to tribunal for flat feet, but I have a lot of confidence they aren't winning.

I disagree that a holiday is not something that dla shoukd be spent on as the holiday could be more expensive due to the disability. Thing like needing certain accommodation (like down stairs bedroom, accessible toilet), nearer tge beach as can't travel easily, higher insurance.. It all limits choice and increases costs.

I remember someone complaining that they'd been turned down a few times for pip. They were trying to claim on the basis of poor vision but can drive. I can't drive because of my vision and still had to do a mandatory reconsideration.

There was a thread on here a while back about someone asking if they could get CDP (Scottish version of DLA) for their child who has flat feet because he can't run or jump. I have flat feet and it's never occurred to me to mention this on my pip or esa forms.

I do use some of my pip for holiday as there is a disability reason for it. And my insurance is more expensive due to my disability.

Just answer the questions truthfully OP and send as much supporting evidence ,from professionals, as you can . Don’t go over the return date even if you have to send supporting evidence later as backdating is rarely allowed .

You sound incredibly worthy and deserving of being awarded DLA for your DC OP. You are one of the deserving ones. House point for you.

On a more serious note, to apply for DLA you have to complete an incredibly detailed form plus submit evidence. It is not easy to obtain this benefit for a child.

I really hope you are able to create your sensory space and please open it up to the community so that all children can benefit.

My child gets high on both and it was a fight, had to appeal etc and I kind of agree with you op. I think children should be assessed in person or video tapes submitted or something other than tonnes of paperwork. It would have saved my family so much hassle and stress and stop anyone who isn't entitled. Altho I do believe humans are inherently good people and fraud in this area is probably very low. You do need evidence after all!

You have to have support evidence to get the higher awards though they don’t just go on what you write on the form. So if someone is trying to argue for severe mental impairment to get higher rate mobility but child attends a mainstream school with no additional support in place and is getting on ok or maybe just abit behind it’s not going to be enough. My son is in autism special school, we don’t qualify for higher rate mobility through smi and i don’t think we should either.

We've spent ours on DS ADHD assessment, on getting the ceiling in the play room reinforced to put swings in and a wall panel for a climbing wall.

We get low rate mobility due to the help and direction needed, which is more than other children his age, and we only got it at this renewal (aged 12) when he's technically better than he was, but other children have improved faster.

Ignore them.

Of course but the amount of people I see who beleive their child qualify, s despite not meeting the criteria is quite a lot obviously they won't get anywhere with it but it does clog up thr system.

I think that would be horrific for various reasons and I'm not sure it would evidence anything other than physical disabilities really.

For those of us with children who are neurodivergent and mask it's hard enough to get schools to believe us at times let alone a random health professional who will look at your child and decide they look fine to them.

It's hard because some disabilities have more costs than others.

Example.

One of my sons is type one diabetic & bowel issues I have to pay for wipes, new pants on a monthly basis, CGM device stickers so the CGM doesn't fall off, petrol for his many hostipal appointments, new bedding on a regular basis, water & heating as I use more, etc

My other son has a LD & autism and doesn't require daily things however he's more big expenses in the past 6 years he's gone through 7 beds by breaking them, he always needs new clothes as he chews them, and then there's his hobbies that help him socially interact and learn social skills.

And obviously there's disabilities that don't really require extra things. It's a mish mash on DLA, but I don't think people can hate on someone for using it for a holiday.
Having a disabled child is bloody hard work.

DLA is not means tested.

It is not abusing the system to get DLA and go on holiday to Disneyland.

So let's just set aside any chatter about how people spend their money. It is irrelevant.

Savings will be counted by the DWP for means tested benefits unless it is locked away in a child trust fund in which case it would not be accessible but you can be penalised for deliberate deprivation of assets when applying for UC.

If you have a deadline for your DLA form get an extension and get an appointment with CAB for help applying. There is a value in having a neutral, knowledgeable 3rd party when filling out the form.

A disabled lady I work with gets pip and she goes on about 3 cruises a year and I say good on her! She works full time, pip is there to make up the extra costs of being disabled to try to put her in the same position as a non disabled person. She has a physical disability so she has extra expenses arising from this, she has to buy pre prepared veg for example which is more expensive, she can only get an automatic car, she has had to have extra rails put in her house etc etc. the list goes on. That’s what the pip pays for and now because she is in receipt of pip (they increased her award on assessment) she can have holidays paid from her salary rather than having to spend it on her extra costs, putting her in a similar position to a non disabled nearly 60 year old who’d worked full time all their life

I’m pretty sure I know the group you mean op. I’ve searched it and absolutely nothing about a Disney trip using the money is coming up. I have two children on DLA. I used the second back payment to move house meaning my children could have their own rooms. I’d be happier to pay less rent and have them share during the primary years but then no one would ever sleep so 🤷‍♀️ .

We had our first foreign holiday when my daughter received DLA for a period of time when she was young. the amount of extra tax credits etc as well as the extra DLA money was a lot. No -one checks what it is spent on.

You have to usually have a face to face for pip. It's utterly pointless. Despite failing their eye test, (I can read 3 lines corrected on a good day) it was still decided my vision really wasn't that bad. You have to be able to read 6 for the driving test.

They just make it all up even if their assessment of you says the opposite.

I do not know about DLA for children, but if it is anything like PIP, then it is no walk in the park to get it.

i do hate threads like this. getting DLA/PIP is bloody hard. it is soul destroying filling in those forms, especially for your child.
yet here we have another thread with people like the op making it sound easy.

Agreed.
What a load of old nonsense.

Yes it's common.

The shift happened at some point I can't exactly state but it went from benefits being for the people in the most need to benefits being something people are 'entitled to' and not based on need.

Which is why reform needs to happen and will, because the bill for disability benefits like PIP has gone out of control and the trajectory is frightening.

Unfortunately, when this happens, it effects people who really need it and aren't claiming on the basis of just being entitled to it.