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
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?
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Should I appeal?
7 replies
NiceCupOfTeaAndASitDown · 11/07/2016 13:25
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PolterGoose ·
11/07/2016 20:19
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zzzzz ·
12/07/2016 08:13
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