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Should I appeal?

(8 Posts)

DD is 3.9 and has a verbal diagnosis of ASD but is not yet diagnosed formally as considered 'too complex'. She meets all criteria for PDA but is considered too young for an assessment/diagnosis at present.

We went straight to private after a very stressful time trying to get help for DS (5, ASD) on the NHS. I'm sure many have been there being told its in your head/bad parenting/he's fine etc. We are just thinking now about trying drop in OT, SALT etc for help but so far have struggled on

DD masks beautifully at nursery, they have no concerns and keep asking "could it be something other than ASD?" 99% sure it's PDA but what would we know? We're only living it every day angry

Anyway the thing is we've applied for DLA. I know she's too young for the mobility element but feel she would warrant lower rate if old enough - they're saying she's consciously choosing to have refusal episodes because she 'can physically walk, she just doesn't want to" I'd really really like to see them get a child having a refusal episode to move but that's by the by, she's too young anyway.

The original claim was refused. The mandatory reconsideration has also been turned down. They are saying that 'a diagnosis of PDA cannot be given before age 5' as this is what it says on her Neurodevelopmental paediatricians report. I feel the age it can be diagnosed is kind of irrelevant, if she has it she has it and is displaying the symptoms regardless of whether she has a diagnosis which puts her care needs far beyond her peers. Am I missing the point here?

They've also said that because she needs no extra assistance at nursery the hours she needs care do not add up to significantly more than other 3 year olds. She's only there 15 hours a week...is there something I'm not getting?

My gut feeling is their understanding of the realities of caring for a child who displays these traits/has social difficulties is poor. I feel it is obvious that she's different and needs more care than her peers. I feel she is eligible for middle if not higher rate care. But is it worth appealing - going to tribunal or am I just in for more stress?

Should I wait until we (hopefully) have outside help or a diagnosis? What do we do in the meantime?

DS had DLA at this age for the same kind of thing but was a breeze in comparison. Is it worth the fight?

Hope that all makes sense - I have an aura migraine coming on and the words are jumping all over the page confused

PolterGoose Mon 11-Jul-16 20:19:54

Did you give explicit examples of how she needs more care than her typically developing peers?

I think it is harder with littler children as they all need supervision so proving the 'over and above' is much harder.

I'm guessing you used the Cerebra guide?

pandyandy1 Mon 11-Jul-16 20:42:16

Hello

I just wanted to say that we are in a similar situation.

I have found my son (3.7) has developed soooo differently to my two daughters and although he currently receives outreach support for a speech and language delay/disorder and is on the waiting list for ASD assessment (fully supported by his paediatrician,) he keeps it together so well at his preschool... and I am sure the staff there think I'm crazy!!!

But like you say...live a day in the home life and things are very different!

On a positive note though...my son sees a pysycologist (again, I'm sure preschool think unnecessary,) but she has said that it's very common with any child with any difficulties to keep it together in one setting but let it all out where they feel 'safe and relaxed.' (Obviously positive as i would be devastated if he DIDN'T feel safe and relaxed with us, his family.)

In my son's case he is composed and happy when things are his way and at preschool with a set routine and access to toys he is fine.

At home when mummy has many mundane jobs to do and isn't there to provide constant entertainment and oversee every tiny interaction that goes on between him and his sisters and he's relaxed...well, that's what I wish his school could see!

#not on your ownsmile

I did give examples. I used the celebra guide for my first application for DS but should really revisit it. My form was so thorough (I thought) - I do think it's the lack of outside help that's going against us. We've struggled on because I couldn't face being told I was imagining things again but I think I need to grow a thicker skin!

It helps to know we are not alone, thank you. I believe masking is a hugely common thing with ASD and anxiety, I just wish HCPs would cotton on to the fact instead of looking at us like we're mad and sending us on parenting courses

zzzzz Tue 12-Jul-16 08:13:37

My honest opinion is that IF she sleeps then I can't see that the difference in care is enough to warrant DLA in the presentation you have described. (NB ds has ASD I do get that it is nothing like raising an nt child).
If it was me I would apply again as she hits reception and just wing it for now.
What would you use the DLA for? Is it something that will impact her development going forward? I found £££s increase with age so for us the early years (minus therapies and Drs appointments) were considerably less expensive.

2boysnamedR Tue 12-Jul-16 09:48:13

Everyone seems to have such varried experiences with DLA. My son got high rate mobility as soon as he hit three. But we had reems of NHS reports. He had feet funding for over a year by then too. Nursery had no input on his form. In theroy he physically 'could' walk but he's not making a choice, there's no capacity for choice is there?
Can you go to your GP with your reports to get to see more NHS peeps to get it all singed off? Sorry not being much help

coffeemachine Tue 12-Jul-16 15:08:52

the important thing for DLA is that you can evidence that her care needs are significantly higher than that of a child without additional needs.

If you cannot demonstrate right now, then I agree with zzzzz, I would wait for a bit.

DD has ASD and we got DLA from 3 but she also had no language at that point, not toilet trained, not sleeping with full time.e 1:1 support at nursery.

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