DLA - FRUSTRATED RANT!!

[stapo1]

Sorry to you all in advance but this is just a pixxed off rant.
Received ds2 DLA award today, lower rate care only!
He is 3.4 years & we have never claimed a penny, but was encouraged to do by everyone, (physio, occ therapist, SALT, consultant paed etc).
He has CP (mild spastic diplega), global delay, low muscle tone effecting his upper body, mild hearing loss, visual perception problems so cannot judge depth & distance speed shapes etc, asthma & we are waiting for a formal assessment regarding his behaviours, routines & anxieties but the paed believes him to have an ASD.
In my real life this definately adds up to more than 1 hr per day additional care. His morning baths to get him stretched & mobile can take this long without anything else. It took me 20 mins this morning to get a clean nappy on him.
He can walk for very short distances, if I am holding his hand as he falls over all of the time he will walk from the front door to the car, about 20feet. Other than that its lifting him from the car to the pushchair, the combination of his extreme fatigue when walking & being scared of his own shadow means he hardly walks at all.
I am considering asking then to reconsider but was wondering if it is worth the hassle. Does anyone know if they ever change their mind or does their decision tend to be upheld?
It took me long enough to apply with mixed feelings but the money would help, was going to contact BIBIC if we got a good award, but will struggle to find that money from elsewhere.

If anyone is still reading my self pitying rant thank you, any advice would be appreciated.

The difficulty with young children is the DLA question whether some care really is more than another child of the same age without sen.

BUT ... i would say yes definitely worth asking them to reconsider - ring them and tell them you will be sending further evidence and you would like them to reconsider upon receiving it. Then ask any professionals who know your son to write statements about the care he needs and also perhaps a family member or close friend.

Part of my job is helping people to apply for DLA's and many have been awarded higher rates simply on the grounds of reconsideration.

IF this fails then don't give up, go to appeal. i know of many which get overturned without you needing to attend, and i do not know of any cases which have been lost once the appeal panel either meet the claimant or the carer of claimant and see things for real. (this is going on work of myself and colleagues.)

From what you have described in your post i would consider your chances high.

Good luck

Thats absolutely terrible stapo1, i really dont understand why the dla people makes these decisions sometimes. Your son should have been awarded high rate care and mobility because of the extra care he needs and mobility because he can only walk short distances. I applied for dla for my ds2 a couple of weeks ago so im sure it`ll be a good month or two before i hear what the news on it will be. My son has asd and gdd. I think you should consider appealing the decision they gave you because it certainly sounds as your son deserves a lot more than they offered you.

thank you for your replies, I feel mean moaning I know there are lots worse off than my ds & he has done amazingly well but even so he does need constant help & care, he is the only child at his playschool that is either carried from the car or in a push chair. The others all run around outside playing with each other waiting for the playschool to open he is not able.
I think I may ask them to reconsider, maybe include specific examples, or a brief 24 hour diary type report. He also goes to an sn group 1 morning per week, perhaps I'll ask them to write a statement, is this the sort of extra evidence they may consider.
Thanks again for your support my bed is calling but I think i'll write a letter in the morning!

Sorry 2mum should of said good luck with your claim for your ds.

Stapo, sorry you've had this hassle with DLA. Sounds like you are more than justified asking to them to reconsider. Did you include loads of specific examples of the extra help required? I'm halfway through DD's DLA renewal claim at the moment so know what a headache it all is.

At the risk of repeating myself I'm using a guide for parents published by Cerebra which is a step by step guide to filling in the forms. I'm finding it really useful as it gives so many examples of what you need to write & how to justify your claim. Can't do links but their website is www.cerebra.co.uk - you can download it from the site or ask for a copy to be sent.

Good luck - really think you should ask for a reconsideration.

stap we are the exact same.

we were awarded lower rate care only too.

we are still awaitning diagnosis however all signs point to CP or dyspraxia. he has confirmed low muscle tone and joint hypermobility.

He is 2.5 years and we too are bathing him loads, he need additional supervision with meals too as he chokes on his food and need help bringing it back up-sorry a bit to much info

We have asked for them to reconsider which they say can take 11 weeks, then after that we are looking at an appeal if the desision stays the same.

Maybe if they come and live with us for a day just they will see that an hours additional care doesnt touch it

thanks Reiver, I will have a look at the cerebra website & give it a go. I think I probabily didn't include enough example & was a bit too nice, trying to be positive about ds. I think I need to toughen up a bit.
JamB its all so frustrating & takes so long, it has taken 15 weeks for our first decision. what a worry you must ahve with mealtimes, our ds is OK wiht that SALT has really helped with his facial muscles & tongue, as a baby though he would take well over an hour for a small bottle as he struggled to suck. I think perhaps we should of claimed back then, but well we just kept hoping things would improve & he would catch up.
Good luck with your claim, please let me know how you get on, thanks for your support1

Apologies - made a mistake with the website for Cerebra which will teach me to type it without checking so early on a Sunday morning !

Website should be www.cerebra.org.uk

Don't be put off by the title - it's relevant for a wide range of special needs.

Like you stapo I think I was too nice with my first claim and tried to put a positive slant on things. I found it all very upsetting to write too. My DD was about the same age as yours at the time and the true extent of her problems was only really becoming clear. The guide I mentioned will help you to give clear examples of how he needs extra help and remind you of all those things you do which you tend to take for granted. Takes you through things step by step.
Good luck!

agree totally with being to nice.

It took such a long time too for 1st decision on DT2 it was 11 weeks in total.

Thanks Reiver
I have had a look at the cerebra guide & I wish I had used it with my original application. Thanks for the info.
I used our local disbility advice centre, they were very good & helpful but now comapring the two I think the DAC must be more experienced with adults claims!
If the request for reconsideration is not successful do you know how long you have to leave it before you can submit a fresh application.

The letter writting will have to wait another day though, he has discovered the art of smearing & I have tonights dinner to clean from just about everywhere. I left him for 1 minute while I put the plug in the bath, but it was long enough!

Jambuttie was wondering, were your dt's premature?
Hope you don't mind me asking.

we had a similar problem when I first claimed for dd. she got the middle rate. was ok till I realised that other children with cp were getting the higher rate.
if you put cp into mild/medieum/severe she would be severe.
I poke about and found out it was to do with sleeping at night. so when filling in the forms i did it on the worse ever night and got the higher rate. ask them to look at it again as sadly things will only get harder the bigger they get, good luck

Like yourself stapo, when my ds was 3, I was encouraged by paed and SALT to apply for DLA. So off I sent the application only to recieve a refusal, I doubt they even glanced at it. When I asked them to reconsider I made sure I included every single report, and asked them to contact paed if they needed any more information. Originally they contacted ds's GP, she'd only met him on one occasion for a minor ailment and had no experience of ds's ASD and how it affected him, I made this clear to them when I asked them to reconsider. Eventually we recieved DLA but not without a struggle, no problems when I reapplied this year(he's 6 now) but first time round I was as angry as you. I know it's emotionally draining filling out these stupid forms but it's clear you are very much entitled to a higher rate, good luck.

Needing extra help at night is key to getting higher rate as 2shoes says. But, it sounds like you should be getting middle rate even if your ds doesn't need help at night. I would definitely appeal.

Re: BIBIC - I don't know your overall financial position but they do grant bursaries. Or give you the chance to fundraise to offset the costs of your visit. Worth finding out about if you really want to go and can't afford it.

hi stap01

yes the twins were prem, they were born at 29 weeks.

we have recently found out to that DT1 has been referred to autism clinic for assesment too so another blow there

I think you should definitely ask for your claim to be reconsidered. I'm sure half the time they don't even bother to read the forms.

You need to be as negative about your ds as possible and keep using the phrases "A normal child of age is able to do XYZ" and "A normal child of age doesn't need to be [stretched/carried etc]".

Thanks everyone for your positive words.
I am definately going to ask them to reconsider & have drafted a letter.
I don't think we qualify for high rate care because he does not have sleeping problems that often, infact the opposite he is very difficult to wake & get moving, he sobbed for 45 mins this evening because I woke him for dinner, In the end I had to bath him to wake him (& then bath him again after he'd covered himself in pasta sauce!)3 baths a day at least he shouldn't smell...
The only time I have trouble during the night is if he does wake I have to re-do the entire bedtime routine to get him back to sleep. This is more frequent during the winter when his asthma wakes him. So we are luckier than most in that we tend to get a good nights sleep.

I have tried to justify why he should be entitled to high rate mobility & hopefully middle rate care. So fingers crossed,
Thanks again

have you had any joy yet stap?

we are still awaiting the reconsideration for DT2 have also just applied for DLA for DT1- possibly autism

HI Jambuttie

Thanks for asking!

I telephoned asking them to reconsider & have written them a long letter giving examples of daily life & giving direct comparisons to other children of the same age.
Tried to be a bit firmer & borrowed some of the wording from the cerebra examples, did feel mean writting such a negative letter about ds2 but when I re read it, it was just honest & made me realises some of the differences that we have just got used to dealing with iykwim.
We received a letter saying it would take 11 weeks for a decision, so back to the waiting game.

Good luck with your claim, what a nightmare having to go through the forms a second time for dt2!

My ds1 (nt6) asked again today if ds2 is autistic, there is a little girl with autism in his class & today he said that his brother was acting like his friend does when she doesn't like noises. Perhaps I should ask the DLA people to speask to my 6 year old!!

Let me know if you hear anything.

Hiya stap

Will keep posting too on our progress.

I haven't sent away any further documentation to them. Felt that if reconsideration is refused I will have all the info i can get hold of for the appeal if that makes sense.

We recieved DT2's CDC report on Friday so we can use that too.

Fingers crossed for you too, I have worked it to be around the 2nd last week in August for the 11 weeks to be up for me

Thanks Socci

The info will be very useful if we have to appeal, fingers crossed it won't come to that!
I'm always the optimist...

well got the letter yesterday saying reconsideration refused

I am thinking now of going to appeal has anyone any tips for me please?

You know I wish they would come and spend just 1 full day and night with me to see just how much "extra" care he needs

anyone?

Nothing helpful to add, just total disbelief.so v sorry. I'm ignoring my forms, have to do renewal application by sept