AIBU to apply for DLA?

[DLADilema]

I post quite regularly, but usually name change for anything specific to my family for fear that a quick advanced search would quickly identify me.

My Dd is currently being assessed for Autism. In all stages so far the consensus has been that she shows definite signs of being Autistic.

It feels like a relief to finally see myself as a good mum who just can’t do anymore than I have been - I’d always felt a bit like if I just tried harder, or was a ‘better’ mum then these problems would go away.

So, I’m considering applying for DLA for her. We have got by so far without this, but a few people have suggested that I should apply. It doesn’t take me long to identify things I have purchased specially because of her needs eg: books, laminator, extra curricular lessons (much further away than the nearest available, because of the extra support and understanding she receives from teacher).

I feel really strange about it. I want to claim for her, but something is holding me back. Maybe I feel a bit ‘grabby’. I don’t judge other people for claiming it - dh even told me Katie Price claims it as it is for her son and not for her. I feel like we don’t deserve it because we have been struggling for so long but we have survived.

To make it an aibu, although in honesty I only posted her for ‘traffic’ - aibu to claim DLA even though we have (just about) coped so far on our own?

If it is relevant we have no savings, and significant debt that we are managing and very slowly reducing.

These replies are so useful thank you so much. I’m embarrassed about the teacher knowing I am applying for her. But on fairness when we started talking about pursuing a diagnosis for her I had to rule out a private assessment because of cost and the teacher knows that.

It is such a dilemma because I don’t begrudge her any of the extra care - she is my daughter and I would do anything for her. It feels so disloyal to write it all down like it is a problem.

It's still dla for children aged 16 and under. Goes to pip when they are 16

Depending on where you are they have services to assist in filling out the forms.

I claim dla for 2/3 of my kids. They’re both autistic and the youngest is severely disabled. I gave up my job when my middle dc was 1 because they couldn’t cope in a nursery setting (I was a high earner). Overtime we’ve had to pay for private speech, OTs, one has serious medical issues, play therapy. It isn’t an easy form but yes I would claim.

I think the thing you have to remind yourself about is that with extra money you should be able to do extra things with your daughter. Ours has benefited greatly by doing therapeutic horse riding and we have been able to do other things to help her socially and aid her self esteem. I have two children with additional needs and have never been able to return to work so rely on things like DLA to give our children as 'normal' a life as possible.
Don't forget that if you are on tax credits DLA will increase these as well. You must tell the tax credit people though as it isn't always applied.

Op if you aren't entitled you won't get, so apply and see. Practically, it's that straight forward. Emotionally it's bloody shit.

I claim for my 3 yo, I hate that for the purposes of the forms that provide money to enable me to not work he is disabled. The rest of the time be is simply my super boy who happens to require constant o2 and is fed via a tube into his stomach.

Glass of wine, chocolate, big girl pants and describe the combination of all your worst days. It's hard because we spend their lives celebrating everything amazing about them but it's a few hours of your life

I think if you ring them to officially request the form, then as long as you submit it within a specific timeframe, they would date any award from the day you requested the form. I might have that mixed up with another benefit I've read about but thought it's worth mentioning. Especially if it takes you ages to complete and send, as it can, being so long and requiring various forms of evidence. Good luck OP.

Our child received a diagnosis before the age of 3 and the psychologist gave us an info pack that included a dla form. I admit that I didn't even consider it, I presumed it was just part of a pack that had no relevance to us. I admit that I didn't want to think of my son's autism as a disability. In trying to understand the condition I was focusing on all things positive that I read online. I was actually quite annoyed when a friend gently tried to make me aware of entitlements (done in a very gentle way). It was just too early for me. Our child was granted full time one to one support at school through his ehcp. Still I didn't apply!!! After 3 years I did (agree with others it is very unpleasant doing the comparison that is needed) and it was granted. I mainly applied as I was concerned for his future. I hope (tenuously) that he may not need support as an adult, but I don't want to be naive. If he does need support the fact that he qualified for dla as a child may be evidence for adult support. We probably can cover his extra costs, however, like you we are not necessarily covering our own as he is the priority. Since receiving dla we frequently replace things (toys), go on days out and feel a lot less pressure when things don't go to plan. We have also been paying for twice weekly swimming lessons for years. He enjoys this but is still in the beginners class which is an extra long-term cost that goes beyond normal parenting. We have bought garden equipment to build his muscle tone which all helps motor skills, without having to go to the park each day.

Meant to say less pressure on days out because if we pay in and it isn't working we don't try to get value for money, we leave if necessary and put the cost of this down as a necessity covered by dla. We can't afford to do this ordinarily but dla means there is a lack of stress and anxiety.

Ssssurvey that’s a very valid point about missing lessons/value for money. Sometimes it’s just not going to work and it is obvious before we even leave the house!

Don't be embarrassed in front of the teacher. When I contacted the senco to say we were applying and dla may make contact, she couldn't have been more nice. I suspect she wondered why I was only just getting round to it. It is a very big deal to us as parents but others think of it as an obvious thing to do.

Good luck OP, the cerebra guide as mentioned by others is very good. Make sure you keep a copy of your original application to help in the future.

If you get the award you may then be entitled to carer's allowance and possibly extra tax credits or UC.

Yes you're right THeLastMermaid. I get them to send the form and then complete it electronically. They backdate the claim from when you applied for it then.

The point about walking out of things is a really good one. You can get a cinema card too where you get a free carer ticket along with the child one. We leave cinemas a lot!

Definitely apply. If you werent entitled they wouldnt include children with autism! I get middle rate for ds because he struggles with personal care. You may not think you “need” it but here’s where my son’s payment goes:
Brand new school shirts, pretty much every month as he spills paint, food, pen etc and can ruin at least 3 shirts a week.
X 2 different sport clubs, plus sone quite pricey equipment for one, to boost his coordination, confidence and social skills.
Ipad purchase payment and mobile data plan, because having a tablet to focus on really helps when he struggles in shops etc and he also uses this to develop his knowledge of his latest obsessions

The rest I am saving toward a trip that relates to one of his main interests in the near future

Without an official diagnosis it's unlikely that you'll be awarded it, so be prepared for that and immediately reapply once you do have it. Even if you need the care, and technically meet the requirements it is difficult without the diagnosis. I had to apply 3 times total. 1st no - no diagnosis. 2nd no - wrong diagnosis. 3rd time - approved. Good luck, it is worth trying.

Ds2 has ASD and we've had dla for him since he was 3.5 yo. We got it for two years (he didn't gave a diagnosis at the time it was granted) and then when that two years was up, I reapplied. He then got it for another 5 years, which means that I won't have to complete that awful form until that 5 years is up.

Don't do the form all in one go. It will finish you off. Put aside three chunks of time, a couple of hours each chunk I would say, and go from there. If you phone up and ask for the form, send la gets awarded and you return the form within a certain time (I think it is 6 weeks), the dla is backdated to the date of your call.

We spend dla on one to one swimming lessons, additional therapy, spare everything e.g. all types of shoes so that DS doesn't become reliant on one particular pair which wpuld cuse problems whn his feet grow and that style isn't available, second hand very rare Thomas the tank engine trains, I also buy the seat in front of DS when we go to the cinema as he kicks (much less than he used to, but we haven't eradicated it)' the list is endless. Someone once told me it should stand for Damage, Loss and Accidents.

Definitely damage loss and accidents!

Damage, Loss and Accidents, I love that. Yes that definitely accounts for a chunk of my monthly outgoings.

OP you sound so like me a year ago.

I claimed before christmas using the cerebra guide & got MRC - DS is 3.
This has let me take a career break, claim disability element of tax credits & carers allowance so we’ll get by.

I totally get what another posted said about normal for you & normal for other families is 2 very different things.

It’s bloody hard & stressful & if £ helps a little then it’s worth it.

Also DS doesn’t have an official diagnosis yet but I had paed report, school IEP’s & risk assessment. HV filled in the person who knows him section too. I’m not sure you would get an award without ‘professional’ evidence.

Damage loss and accident
Despite buying very hard-wearing tablet covers my son will not abide by them at all. There is no reasoning with him on this!

Definitely!

Just as others have suggested you should go into as much detail as possible and remember to mention how things are on her worst days.

Just wanted to say from a school perspective, if anything schools are more aware of how much extra money goes into caring for children with additional needs as we have to apply for funding for provision as well. Which doesn't only include things like 1:1 support but can cover sensory items, calm down toys and other things, so are well aware of how expensive things like these are.

Please don't feel the teacher will judge.

It's a hard firm to complete as it's so negative.

Please do it, the money is to help you and your daughter. If you are awarded middle care or above you can claim carers allowance too. You are also able to claim pension protection if you don't claim carers allowance. If you are on low income it also brings extra tax credits/ universal credit.

So many things affect your life when coping with a child on the autistic spectrum.

Even very subtle things can be draining.

The best advice I was given was to fill out a spare copy of the DLA form and go and see a representative at the local branch of your National Autistic society.

They were so good, and prompted me to think of things in a different way.

The form is very much set up for physical disabilities and it's not intuitive. Unless you understand how to get your points across you are disadvantaged.

Good luck, don't be down on yourself. It's a hard process writing down things you'd pushed away or hadn't wanted to acknowledge.
But it means you'll have a little bit more flexibility with your daughter.

Our DLA has meant I can now plan activities that we can access together. For example, my daughter loves swimming but can't cope in a public pool due to various factors. I now have the funds to hire a private pool for an hour that costs x4 what I'd pay for a public swim (it's a very reasonable private pool).

It's been very welcome and needed. This means my daughter gets to experience things her peers can do.

I should add, we are on the pathway to diagnosis. We claimed based on need.