DLA

[denpark]

I was wondering if I could get your thoughts. My son has just been awarded DLA and we got a back payment, which is amazing.

Now trying to work out what it's considered ok to spend the DLA on as I'm autistic (son has ASD too) and it's giving me anxiety! I don't want to get it wrong!

He's what they used to call high-functioning and most people don't even realise he is autistic. I'm thinking about a weighted blanket and maybe finally getting him tested for dyslexia (never been able to afford it up until now as it's so expensive).

When I start getting the monthly payments, what do people pay for with it? He likes quite specific food and likes to wear certain socks (bamboo ones so they're not cheap and he constantly loses them). Are those kind of things ok?

You can spend DLA on anything that benefits DS. Socks and food are OK.

DSs’ DLA goes into the family pot. We spend far more on their needs than we get. For example:
Higher gas, electric, water, food, fuel, parking costs
More extra curricular clubs - as physio/fitness and to aid emotional regulations/social skills/social interaction
Equipment (including all the things we buy in the hope it helps but doesn’t)
Costs associated with hospital stays

Thank you for this. Really appreciate it. I'm looking into taxi costs as I'm going to have to work later which means I can't always pick him up from school. So the taxi could take him to his sister's childminder for me.
I don't think he'll be ok getting buses and I really don't want him walking there.

So many people I know keep telling me he'll 'be ok' but they really don't understand he'll find it far far too much and it'll overload his anxiety levels.

Have you looked at school transport? Although, some LAs insist it is to/from the home address.

I came on looking for a thread about this.

We have just been awarded for DS1. I have panicked about the back pay and wonder what is 'allowed'. I have set up a separate savings account which I will transfer his DLA in, and have gone back through my bank statements and 'paid back' things like his medication costs; therapy costs etc (although it does not come close as to what we have spent in the past year) but feel really anxious now about it all.

I want to take DS to the theatre later this month as an enrichment experience for him- so guess that is a valid payment. But @Relaxinghammock is right- there are always extra costs that get absorbed into the family budget such as heating etc. What will be good though is that we can now get more regular counselling for him.

It's a strange feeling, isn't it. I feel very nervous about the money abs don't want to get anything 'wrong'

It is a strange feeling. I feel almost embarrassed, like we don’t deserve it. But today I have just paid for ds to go on his yr 9 residential. I’d declined before because we simply could not stretch to it. Now I can. I felt quite strange. We are so used to missing out on things. It feels like a new world is opening up. ❤️🩷🌷

I also calculated what we have spent since I put the application in. It’s over 1000 on meds and therapy and travel to hospital appointments. We can up his 1:1 time with a TA as well. My head is spinning. We got higher rate which is so much more than I hoped for.

good luck toy you @denpark 🌷

@CloudyAgain theatres often have concessionary tickets for those requiring a carer.

Does DS not have an EHCP? If so, it should be in there and you don’t have to fund 1:1. If not, you should request an EHCNA.

Thanks @Relaxinghammock we don't have an EHCP. We got all the diagnoses privately and up until now (independent school) the school has absorbed his needs. So we sort of left it at that.

I am not sure what an EHCNA is so will look into that.

But it is becoming increasingly difficult. I had to give up work due to DS requiring so much extra input and support just to get him through the door of school and then coping with all the carnage afterwards. I gave up work 2021 and we are haemorrhaging money now.

@CloudyAgain an EHCNA is the assessment you first request as part of the EHCP process. Do request one. IPSEA and SOSSEN have lots of helpful information on their websites, including a model letter for requesting an EHCNA.

If you haven’t already, don’t forget carer’s allowance. And, depending on your household income, don’t forget to inform UC or look at applying.

My sons money is spent on his enjoyment at going out to fast food restaurants to eat,theme parks,his food that is specifically for him that costs more than I would spend normally,it's used to replace his clothes that he bites,and to replace iPad screens that often get cracked .
Anything that makes life easier for my son and brings a smile to his face x

The amount of cracked screens and broken things is astounding, isn't it. Plus the amount it costs to get into places that he's desperate to go to and then find ourselves leaving early as he's 'seen it now' and is bored.

Thanks @Relaxinghammock I will look into carers as well. Thank you for the advice and the website suggestions.

@eatdrinkandbemerry your son bites his clothes too? Mine does as well and also unravels the stitching and eats it. I find that hard to cope with as get worried about it harming him. He used to eat his books as well. A parenting phrase I never thought I'd have to employ was 'Stop eating your library books!!'. He's stopped that now but does a good line in eating his socks.

I was under the impression that you can not get carer's until you have been awarded DLA ?

In regards to school transport alot councils are struggling to provide this service

You can’t receive CA until DLA is awarded, but @CloudyAgain said she has just been awarded DLA for DS1 hence my post.

School transport is governed by legislation, if DC are legally entitled to it the LA must provide it and if they refuse parents can enforce their rights.

Hello I'm quite new to this group so not sure if this is the right place to ask or not but worth a shot... I sent off DLA forms which was received by them 26/07/2023 I was told in the letter to expect a 15 week wait until a decision had been reached I've only just crept into week 6 so I know I'm probably still being a Keano but has everyone else waited the 15 weeks or have you had a decision sooner?

Hi. It took nearly 20 weeks to get ours back so you could be in for a fair wait

Hi, thank you so much for your reply I will wait and see when a letter arrives