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...

And I'm really not being goady, I just joined the page recently and sat down to do the form this evening and ended up scrolling through the posts in disbelief!

Leave the group. Find another. Or contact your local Citizens Advice for form filling.

The group seems to be making you angry and upset, and it doesn’t sound healthy for you. I think the best thing would be to leave the group (there are so many people on it, it doesn’t sound very useful or relevant to you either). All you can do is focus on your own child, don’t worry about what others are saying they are doing (the truth is often stretched on social media). I hope you find a more useful group soon.

I tried CAB but they don't have any availability before I need to get the form sent off.

People posting about whether it's OK for them to use their backdated pay for a family trip to Disney.

What is wrong with that?

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.

You don't get high rate mobility for having flat feet. Neither does the form ask if you play football.

Try harder OP

Thanks, I'm just exhausted, life with my son is relentless and it bugged me that people were so brazenly fudging. Don't know my own mind atm!

Try harder to do what?

What group are you in? I'm in a DLA group and while you do see posts asking about how money should be sent and advice for how to word things but not really the type of things you have mentioned.

Cerebra used to have a really good guide for applying for DLA. (probably still do but mine are adults, now and get PIP)

I don't really understand why you're upset.

The people getting DLA, do so because they have a disabled child.

Spending some of the money on a holiday for the child and family doesn't seem like a bad thing.

The tribunal will only award HRM if they have enough evidence and the child meets all the critera, believe me it's not just handed out on a whim.

Saving for the child in question doesn't seem like a bad thing either, it's their money after all and if everything else is covered saving it for university sounds sensible but UC does class it as savings so they'd probably have to open a savings account in the child's name and wouldn't be able to have access to it.

If you're not comfortable in the group then leave and contact CAB to help you fill out the forms.

Try Fightback. They really good for PIP, but I think they do DLA as well.

Thanks, i will look at this. Was probably misguided starting this thread. Will give my head a wobble. Sorry all, just finding life with SEN child hard and probably got a little over wound up.

Try harder to do what?

Find something real to be bothered about. Net oh of the things you mentioned are real.

Just to clarify; I don't mean they are not real as in I think you made them up, I mean they are not real as in nothing to be bothered about. It's fine to use DLA for whatever you want and you don't get high rate mobility for flat feet. Be more aware rather than annoyed.

Thank you.

If you call the DLA helpline and ask for a deadline extension - explain that your local citizens advice doesn't have an appointment available in time - they will usually give it. Get citizens advice to help with the form. And leave the group.

Its difficult to get DLA let alone the higher rates so try to take it with a pinch of salt if people are saying they're trying get higher rates for minor things - they're very unlikely to succeed.

People can use it for whatever they want so try not to judge. Parenting a disabled child is hard enough, you know that!

For using back pay for a holiday, the families will have had months of increased costs for their child due to their disability so they won't have been able to save their own money for a holiday. Holidays are difficult to arrange for children with disabilities but they are still as beneficial

Oh and just to add the SN parenting board has loads of threads on DLA if you want to get advice there

https://www.mumsnet.com/talk/special_needs

Thing is advice for how to word things also applies to legitimate claims as well. We tend to downplay our disabilities (I certainly did) and sometimes we don't express how bad things are articulately on paper. Our words are so easily twisted by assessors as well. So there is a place for that kind of help. But of course any unscrupulous person could abuse the system.

I sincerely doubt that the flat footed child would get a high rate mobility if they can play football. Flat footed to the point of severe pain when walking would get some points I think.

yabu

I’m on that group too. Bottom line is people can spend the money on what they want. I have three children with SEN and used to get disability for all three. We didn’t have any expenses that weren’t covered by other services but it helped since I couldn’t work due to caring for them all. Some will be better off than others and it breeds judgement and jealousy. A shame really, since life is hard enough for SEN parents without getting it from each other.

If you think about saving money, this is something most people do if they can but parents of disabled children often do get wrong advice about whether they can save money, they also often don't fully realise how much of their income goes to their child's additional needs, so they wrongly worry that they aren't using the money in the way it should be used and that they aren't allowed to have any savings. So for instance they pay for extra travel costs, food costs, electricity, etc. through household budget rather than specifically using the DLA for it and then worry about how to use the DLA.

I think I'm probably in the same group ,it winds me up the things some people try and claim for i just roll my eyes..

Seems like there are quite a few defensive people in this thread, guilty consciences?

I’m on one of those groups, possibly the same one. I’ve literally never dared post as some of the people can be so nasty.

As for playing football, this probably doesn't look the same for the child as it does for the child with no disabilities. My child goes to a sports class but how she participates isn't the same as how a typical child would so you do have to be clear when filling out the forms that you are giving an accurate description.