To apply for dla for ds

[MissMalteser]

Ds is 2.5 and is on the pathway to being diagnosed with asd, I also think he may be dyspraxic although I’m waiting on the results of blood tests to rule out genetic reasons before I broach this.
He is 2.5 and is completely non verbal, he used to be able to say banana but has now lost it, he also has very little comprehension, the only words I am sure he knows are ‘no’ and ‘juice’
He can feed himself finger foods but cannot use a spoon and so needs to be spoon fed anything slightly liquidy (soups/yogurt/cereal)
Getting through the day with him can be very hard. He is very strong and really too big to be lifted anywhere so everything takes 4 times as long as it should. Getting him into the car for example can genuinely take round 30 minutes
He is obviously still in nappies and I would imagine will be for a long time to come
I still dress him every day and he doesn’t put his arm out for example when prompted to help me, best case scenario is like dressing a doll :( worst case it can again take 30 minutes
His childminder who watches him while I work 3 days a week has recently started making noises about him being hard to handle and not liking the other children in her care. I can see where she’s coming from tbh, he is my amazing beautiful boy but he is also very ful on, he can spend up to 30 mins at a time stimmimg and your day just has to stop while he does because it would lead to a full melt down to try and interrupt him
With all this in mind I have been thinking about giving up work to care for him full time, but this comes with many money worries for us, I was speaking to a friend about it and she expressed surprise he wasn’t receiving dla. I hadn’t actually considered it as I thought you had to have received a diagnosis but looking online this seems not to be the case, but I am still very torn about whether to apply or not. On the one hand it would enable me to give up work and look after him one to one which is really what he needs. On the other hand is it likely to be successful without a diagnosis? Also even though he is significantly different to any other child his age and his needs are much higher I feel like it’s so normal to me I’m not sure what counts anymore? I don’t like comparing him to other children but at the same time I’m not sure how to gauge anything :(
I know this is aibu but the sn kids topic has very little traffic and I also genuinely would like to canvas others opinions on this

Absolutely apply for it! If he gets middle rate you'll also qualify for carer's allowance.

Definitely not unreasonable. Apply for it!

I would apply.

SOme of the things you mention like being in nappies they will class at this age as being normal for the age but plenty of other bits show he needs more care than peers.

Have a look at the cerba guide as that walks you through the form step by step

It may be difficult without a formal diagnosis but absolutely apply. Be prepared OP the form is depressing as hell, its huge as well. Give yourself a few days to fill it out and use an example of the worst case scenario when you do. Good luck

Please apply it is really hard getting it even though you are genuine
you can tell them he is under investigation for his illness. From experience people in the medical profession are reluctant to diagnose some illnesses. You get the benefit for how your illness affect you and not the illness itself. I hope this helps

Hi OP
As a mum of three kids with ASN. I definitely think you should apply. DLA is about the needs of the child and not diagnosis.

Thank you, I think I could get a copy of the report from the paediatrician he’s seen and his salt so I will ask them.
This is all very new to us and it would be a big weight off our shoulders to know we don’t have to worry about the day coming when cm says he’s too much for her. I just hate the thought it may be rejected and so maybe if I wait a while longer there will be more evidence? But the older and bigger he gets the more apparent it is that his needs and struggles far outweigh other kids in his age bracket :(
The waiting list in our area from referral to the asd team is 8 Months which I know is great compared to some others but seems such a long time spent in the system with no support or intervention available, 8 Months before he gets any therapy apart from salt, 8 Months wasted before we can access support for us as a family, it seems so strange to me that it isn’t triaged depending on need, because if it was I imagine ds would be quite high on the list, I think he is at the lower end of functioning as he Is significantly developmentally delayed.

Definitely apply. I was working full time when DS was diagnosed with ASD and it was a massive struggle getting childcare and expensive as he needed more support than other children. I was able to massively reduce my hours when he got DLA and as a result was able to give him much more 1-1 support. It was a breath of fresh air to have the panic or childcare removed.

Definitely apply - I can recommend the Cerebra guide to help you in completing the form. www.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

In terms of money, a successful award of DLA results in an additional premium in your Child Tax Credits (but it's not automatic, you have to tell HMRC); and if you were to give up work, you can claim Carers Allowance if your child is getting DLA at middle rate or higher.

As well as the Cerebra guide, I'd recommend the Autism Parents Chat group on FB - lots of guides to autism and behaviours, as well as lively discussion

Please apply.

Definitely apply.

When you fill in the form, remember that they will be comparing his needs to those of an NT child of the same age, so make sure you highlight the things that a 2.5 year old can generally manage or be left alone to do.

I've heard good things about the Cerebra guide too, anecdotally I've heard of a few people being successful when they've followed it.

Oh, and if you're successful and he gets middle rate care, not only can you get carer's, but if you get tax credits you get approx an extra £60 pw.

Don't forget to fill the form out about your worst day. Don't feel you have to sugarcoat anything as they need to know about difficulties. Have you looked into two year old funding for nursery or specialist nursery provision?

do not fill in the forms by yourself get help because you need to answer them in a specific way to have a chance. Saying that list everybody that has seen or worked with him and write notes on what they have said about his issues - especially his childminder (does she have a qualification in childcare as this will make more of an impact) always list how he is on the worst day. How long does he take to eat or dress what is his sleeping like? Are you under child development centre yet or have you been referred? Include GP but any other department or medical treatment or therapy. It helps if you go to CAB or NAS if they help you to fill in form. Take your time - repeat incidence on the form in questions where they seem relevant include and describe actual incidences - you cannot write too much!

I agree with all the above about applying. I wish I had done it earlier for my DD, though, like you, I was unaware that we were eligible. It was during one of her interim appointments (pre-diagnosis), that the doctor spoke about DLA, and he said "why haven't you applied for it?". I was surprised, but went ahead and DD was awarded middle rate care and low rate mobility. I used the Cerebra guide linked above, it is really useful. I am going through this process again with my DS, he's a little older than yours and has similar difficulties. He doesn't have a diagnosis yet, but does have a lot of hospital letters/nursery & external agency letters to support his case. Make sure you include as much of this evidence as possible.

Further adding to the yes -.apply; get the form now and find where your nearest assistance to help complete it is. Even if you are good with forms, it is essentially very upsetting because you have to really face the difficulties your child has and write it out in black and white.

With regards to any reports that have already been made regarding your ds you should have been given copies already but if you haven't please get copies and make sure that you get copies of every Report, etc from now on. There will be many over the next few years OP. And more once you add education into the 'mix'.

Good Luck

Oh thank you everyone for the guidance and support, i would also like to highlight it’s such a shame that the sn board doesn’t appear on active threads as there are so many knowledgable people that post here more than anywhere else and the advice given really is invaluable
I have downloaded the cerebra guide and will have a proper look at it later
Is the funding for nursery available in NI? I don’t think I’ve heard of it but we were referred to the educational psychologist who called to advise he become eligible for his appointment regarding SEN in sept when the new academic year starts but until then she would refer us on to preschool specialists? (I think, I’m going to have to start taking notes at each call and app because it’s so much to take in)
We have been referred and had our first app with the paediatric asd team here in NI, when we had our app for the developmental assessment the paediatrician who carried that out advised us she sits on the board of the asd team so her report would form one of the 3 specialist reports needed for an official diagnosis, so I think this means we are 1/3 of the way in but again I’m not sure how much I took in and when I called to confirm the helpline was unhelpful to say the least
I haven’t been given any copies of any reports but will definitely request them!
This has probably been the most stressful period of my life, to know your baby is struggling and feel that with you everyday but also to constantly worry about the impact on finances, the rest of the family, your own stress levels and your relationship is just a whole other level of headfuckery so I am very grateful for the all the advice

The important things for you to remember from a stress perspective are (1) you are not alone and (2) take care of yourself.

I have to go against the grain here and say I had no issue applying for DLA for my dd. I was awarded within 3 weeks middle rate no questions asked. Even filled in the form myself! It was very simple and quick ime. and dd wasnt diagnosed either at the time.

Thank you eggysmum
Inthelightofthemoon that is comforting to know, I worry that without enough evidence or a diagnosis they will think I’m trying it on, you hear so many negative reports on pip etc that it seems so many are turned down and I really don’t think I could handle being told he’s not ‘bad enough’ for dla when I know it would be a huge benefit to us all, I actually wish there was a face to face assessment as then I wouldn’t beat myself up with thinking it my fault for not putting the right info if it gets turned down-anyone who spent more than a minute with him could see it clearly

Yes, do it. I'm just about to do it for my 7 yr old son who has global developmental delay. Like you, I'm just used to what I do for him but there's no denying it doesn't impact our family life. I wasn't even aware of it but a friend has applied for her 12 year old son (and got it straight off) and told me I should. I don't know whether they will give it to us but definitely worth the time trying. It sounds to me like you would be eligible... Good luck!

I applied for dla for my son due to a speech and language disorder. He gets middle tier which I was really surprised at. I don't claim carers allowance as I also work. I sent off every form I had no his problem, speech therapy reports, educational physiologist reports, letters in regards to accepting his language unit placement etc. Make sure you send off photocopies of everything you might have.

Same here. I applied myself using the cerebra guide with notes from all relevant appointments. And In section 20 I asked SALT to fill it in as she saw him the most. He was awarded middle rate for 2 years and it took about 5 weeks. You can only backdated dla from the date you apply so don't put it off any longer! Feel free to message me if you need any help. I'm no expert but it's nice to have a hand hold oh and if you include your mobile number you get progress texts about your claim.

@MissMalteser I'm also from NI and applied for Dla for my 5 year old DD who has a lot of extra needs and like u she is waiting on assessment for ASD. I sent the form off in March and only got a reply last week to say she wouldn't be getting anything because she does not have a disability. So while yes I agree with others who say apply I just want u to know that it definitely isn't easy being awarded x

DS has yet to be diagnosed with asd & dyspraxia but is on the way to being. He is 3 & was awarded MRC.

I used cerebra guide & sent copies of pre school IEP, risk assessments & paediatrician report.

If you do apply take a photocopy of the form & keep copies of any documentation you send - helpful for renewal.

I am now on a career break, claiming carers & child tax credits.
Like yourself childcare was becoming a huge issue.

I know have ed psych report & draft statement (ECHP in England) and SALT reports. I honestly feel he is entitled to HRC but I don’t want to rock boat when renewal is a year away & will hopefully get LRM.

I’m still stressed as life is stressful when parenting small children especially when additional needs are in play, numerous appointments & admin. I’m on anti depressants & diazepam. I wouldn’t be fit to work anyway but I do find it isolating.

I would def apply in your position. good luck.