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...

This, absolutely!

When you have a disabled child you spend a lot of your time explaining to people who don't understand. There is nothing to be guilty about.

This!

Absolutely!

im on one of the groups and imo people do spend the money on things it’s not intended for.

its intended for extra costs that occur due to having a disability like extra clothing due to a child biting holes in them or having incontinence, speech therapy and so on.

its not meant for spending on things you would otherwise pay out for if you had a child without a disability.

so imo a holiday would not be something my sons DLA would be spent on, as you would still go on holiday even if your child didn’t have a disability.

my sons DLA goes into an account that’s only for that. Every penny spent out of it is costs occurred due to his disability, if I would buy something anyway whether he had a disability or not, it doesn’t come out of that money.

DLA is not compensation for having a disability, it’s because having a disability means things are very expensive for you that you need to pay out for due to having a disability.

i know I’m in the minority though in my way of thinking.

No-one gets to dictate what the money is spent on and that's how it should be. I used my back payments to pay off my debts because it would have been rather silly to use it all on a sensory area and then have to pay a fortune in interest each month. Why do you need validation so badly from the benefit bashers of mumsnet? It's extra income and that's that.

DLA is fairly easy to get so I'd make the most of it. Once they get to sixteen you have to apply for PIP for them and it's a lot more difficult.

You might go on a holiday with or without disability but it is more expensive with for a variety of reasons such as increased travel insurance, you can't go to a lot of cheaper holiday locations due to lack of accessibility or suitability, paying for taxis rather than walking or using public transport, it all mounts up

This

I think it just depends on individual families

We just pool the DLA and carers allowance in with the rest of our money. Caring for DS means I can’t work full-time even though he is older now. Family can’t help with childcare in the same way they have with other DC because his needs are higher, plus I’m too exhausted anyway. So in a way it’s replacement income for that. We always prioritise both children’s needs above our own so I see no issue with it.

This is why a lot of people are pushing for an overhaul of the whole DLA process, and benefits in general. I’m sure there’s many who claim and are absolutely entitled to it, but there’s many who are abusing the system. Yet th3 government seems to think it’s okay to blanket remove the fuel allowance from pensioners who are just above the breadline.

I think it's not as clear cut as this in a lot of cases (though appreciate it is for you!).
For example, I'm a single adult who gets PIP, and it goes into my general budget/ savings. My grocery shop is more expensive because of my disabilities (I have points on cooking/ preparing food), but it wouldn't make sense to try to work out what proportion of it is "extra" and therefore should be paid for from the PIP pot, and what proportion counts as a normal grocery shop. I try to save part of it for my next wheelchair, but I also save other income towards this. I have a higher electricity bill because I can't move around as much, and am at home a lot. I do also need to buy equipment and disability related consumables periodically, but so much of my life is just more expensive in a way that can't be categorised into PIP/ not PIP.

ETA: with the holiday example, before I was ill I did solo travel, but now I need someone to come with me. I have once gone on a holiday with a family member who couldn't afford the full cost as a carer, and therefore there's an extra cost for me (because I couldn't go on holiday alone)

Your also very privileged to be able to put your sons DLA in a separate pot ,many parents of disabled children can't afford to so and t ot gets put onto the general household pot ,which is a perfectly legitimate thing to do .

And decided to judge other SEN parents. Nice. 👌🏻

I think there is many who try to abuse the system I see people on daily basis trying to put in claims for very tenuous reasons they are rarely successful though.

Contact citizens advice for help or your child's OT or SEN teacher if they have one, they will be used to the forms and will be able to support you.

I don't want to repeat a lot of what's already been said. My 4yr old son receives middle rate care dla. The whole process of applying and the 24 week wait for a decision was frustrating I will say that.
When I received his backpay a good wedge was spent on a XL Disability buggy ( he's an eloper especially on public transport) so this was essential. Safety aids for the home and all sorts of other things he needed.

Going for high rate is extremely difficult to get. They don't just hand it out on a whim. And you definitely would not get it for flat feet .

That aside , I just wanted to reach out. Leave the dla group ( I definitely know which one you mean ) as it doesn't sound the place for you with how you're feeling.

Also you mentioned a sensory space. Heads up, if you were to be awarded dla for your child you would be able to apply to the Family Fund for a grant , one of which is a sensory package. This is what I got for my boy.

Guilty about what?

https://www.benefitsandwork.co.uk/

They do a guide to assist filling in a child's DLA form,

https://www.benefitsandwork.co.uk/guides-for-claimants

You would have to be a member to access it but it costs just under £20 and its worth the money. They are really helpful for understanding what the questions are really asking if that makes sense, and how to fill it in properly.

Its a legitimate site, I've been using it for ESA and DLA then PIP for years and have always been successful following their guides. Whilst I can't vouch personally for the child DLA guide I imagine it's as good and up to date as their adult ones

Yes I wondered that ?

so imo a holiday would not be something my sons DLA would be spent on, as you would still go on holiday even if your child didn’t have a disability.

While we would go on holiday regardless of disability, holidays are more expensive because of the disability and so I do use DLA to pay for holidays.

The DLA group I'm on is usually people posting that they have or haven't been awarded, asking if this evidence is good or asking for advice because their child should get high rate but have either been awarded low rate or not at all.

My son gets high rate care and high rate mobility and the money just goes into our family ''pot''.

I'm in a number of disability and DLA groups on Facebook and I have NEVER seen this at all.

The most entitled posts I see are people complaining about not getting a free carer ticket at an event.

DLA wouldn't cover a trip to Disney even with the back pay from the current 20 week wait. It's not fortunes, it certainly doesn't cover the additional costs of disability but it's a contribution and it's a gateway benefit for lots of families,

My son gets the same his HRM pays for his mobility car and the HRC goes into the family pot my son has severe and complex needs though and loads of evidence

I think the Op,s point was that some people do save the DLA for holidays ,which is a legitimate reason, as it benefits the child ,some people save all the DLA long term which isn't really what it's for but no one checks .

I think I know the group you mean . I left it , there was someone asking about high rate mobility, because their child was a few months behind in school .