Bookie and DLA... ***WON***

[Bookworm]

Well, renewal for child came today and it's the same as last time, when he was 7: higher rate for care and lower for mobility.

 

Last time, I was just so glad he got it (it was 1st time we'd claimed anything) that I just accepted it, but this time, I am going to appeal: I think he should get high mobility. After all, the criteria used is "needs significantly different from a child the same age without a disability".

 

My argument is that whilst it could be argued that quite a few 6-7 years old can get upset and collapse in a heap and need to be carried or dragged and therefore that an AS kid's needs may not be so different, and of course, 7 yo can't go to town on their own and need supervision, so yes maybe... but at 12, a non-AS child can go to school on their own, can go to the shops, the cinemas, the swimming-pool and all other activities... Not only my child can not, but if he goes into meltdown, it now takes 2 carers, not just 1 to control and hold him, so I'd say that his needs are now MORE significantly different from his age-peers than before, and that is what I'm going to argue.

 

The risk is that when you go to tribunal, they review both aspects and there is always a chance the tribunal could reduce the care element, but I'm thinking that if the DWP were happy to give us the higher element, it's not terribly likely the tribunal would then change it and I am happy to take the risk.

[Bookworm]

Nah, this is the DLA we're talking about here, remember?

 

I'm going to an Incapacity Benefit appeal with someone on Wednesday, and the original decision to stop IB was made mid-September!

[Bookworm]

Update: Computer says no.

 

 

 

Hi-yo, hi-yo, it's off to tribunal we go. *sigh*

[Bookworm]

LOL.

 

 

Well, coming after a week where he threw a scooter at a teacher and another day barricading himself in one of the rooms and when one of the TAs told me that when they go to the shops, they take 3 members of staff in case he kicks off, I am all the more determined to get this wrong righted. The money is incidental in this instance. I am sick of seeing autism treated like one of those mildly inconvenient issues when it colours every aspect of their lives as well as the ones around them.

[Bookworm]

No, it's not your imagination.

 

Every claim they turn down which doesn't get appealed saves the government money, and well, with those banks needing rescuing every week to the tune of billions, they have to trim somewhere, don't they...

[Bookworm]

[Bookworm]

Appeal form went last week. It's a waiting game now.

 

Meanwhile, this morning, child refused to get up. Simply refused. Not moving, not responding, dead weight. Trying to touch him would send him in a major fit and even if I somehow managed to dress him, get him down the stairs in that state, transport then wouldn't carry him for safety reasons.

 

Yet DLA tell me that he doesn't qualify for higher rate. Yeah, ok. Maybe I should film this and then let them see the reality of things.

[Bookworm]

That's an appalling statistic, dpick, and one which only confirms what most of us suspected, that is money saving any which way they can on the back of the most vulnerable. Bloody disgrace.

[Bookworm]

Phoned DLA last week to find out if they had received my appeal as they hadn't acknowledged it... Nothing on file, but I am being told it doesn't mean they haven't received it, just that it hasn't been processed yet.

 

So we have to lodge our forms and appeals in a timely manner and with a very short window of time, it would seem, but they can take as long as they want. Says all about how we are considered.

[Bookworm]

Got my acknowledgment they have received the appeal yesterday, saying they are going to look again at all the info they have, and to contact them if I haven't heard from them in 11 weeks.

 

Funny, I thought that was what they had done when I asked them to review their decision. Surely they wouldn't have said no without actually looking at the file first?

 

I reckon they either a) didn't actually review the file and just said no and/or b) they're going to review the evidence to see how much of a pain in the a**e I am going to be and whether it is worth them trying to fight it.

[Bookworm]

Oh yeah, didn't you know GC? Once they reach the magic milestones (12, 16) they're not autistic anymore, that's the law! Shame the little blighters refuse to pay attention and keep on refusing to conform!!!

[Bookworm]

Reply received today, no change in decision. There's a surprise.

 

Tribunal, here we go, starting from a low point, I know it is going to be VERY difficult to get them to accept that autism justifies a higher rate of mobility, and i know it is going to very tough on me to do this appeal, but needs must.

 

Morale very low tonight.

[Bookworm]

Sorry hun, i take it you have supporting letters from docs and social workers etc

Silly me of course you have

No, I don't. T's AS doesn't require ongoing medical care, and apart from the autism, he is very healthy (in fact, his condition mean that he has a very high threshold pain so seldom needs medical attention), and as for social workers, I firmly believe that the best way to get on in life is to have nothing to do with them.

 

I have however one good thing going, which was worrying me: one of the criteria is the brain damage part, and the DWP's own dr accepts that in the submission, so that's one of the big obstacles out of the way.

 

Now what I need to do is build a case of testimonies from people, professional and friends to testify what his AS means in real terms of care and mobility.

 

What would be ideal is if T could go into meltdown and have someone film it whilst he's being handled, and can anyone imagine how that could happen? Yeah right. I do have some pics of him rolled into a ball by the car and that will go in, but it's difficult...

 

Thanks for the support, guys, I feel a bit better today now I have started working on the file and developing a plan of action.

[Bookworm]

Still not got the hang of quoting, huh?

 

I understand what you are saying, but I truly don't think the GP would be any help, the surgery changed contracts recently, all the GPs which saw the kids from infancy are gone, and none of the new ones has ever met T yet. The paediatrician discharged him back to GP a couple of yrs back.

 

Even the NAS helpsheets are saying that the GPs might not be much help to prove a case to the narrow confines of case law and that family and friends may be more useful. If ever there was need to confirm how isolated we are...

 

Thanks anyway, all thoughts and comments are always welcome even if they don't lead anywhere, you never know which one will fire up a good result!

[Bookworm]

Well, got letter from tribunal, I've ticked the box to say that if they get a cancellation, I am willing to forgo the minimum advance warning, you never know, it might help getting a tribunal date this side of Christmas. Getting together my testimonies etc and thinking on my strategy. DS's behaviour's is deteriorating rapidly at the moment and I keep on wishing they could see him then and then tell me that he doesn't justify the higher rate.

[Bookworm]

Well, what do you know? Got letter today from tribunal and they've set the date already : 15th July. Better get my skates on then.

[Bookworm]

6 days to go and quietly pooing myself.

 

Chap from Mencap is coming today to go over my bundle and point out glaring ommissions, missed tricks etc...

 

Friend of mine read it yesterday and said that the amount of testimonies makes it look overwhelming and that if I don't win, no-one can. Well yeah, but SHE lives with it too, she knows what it's like, convincing the panel will be another thing altogether.

 

Living on my nerves right now. Anyone looking at me the wrong way is likely to get their heads bitten off. And to top it all, T. won't wear his fleece anymore because a kid coughed on it the other day and some phlegm got on it. Despite having washing twice, he just won't touch it anymore. Oh, and he's got a bald patch now where he has been pulling his hair out. *sigh*

 

Signed: woman on the edge of yet another nervous breakdown. Thank goodness for Prozac, is all I can say.

[Bookworm]

Aaaaand *breathe*. Dropped my bundle to the tribunal earlier on, nothing else I can do now but wait for Wednesday.

 

I hadn't realised how much this had been weighing on me until today when we had the end of year assembly, and T. wouldn't come into the room (asemblies have always been a major major sensory issue). As the other kids swayed and moved their arms (badly), I thought: "is this is? This is what we can look forward for the rest of our lives? He is 12, he should be out with his mates, getting up to mischief, worrying about his looks, doing sport stuff... Instead these kids are moving their arms and my own son can't even join in", and I started crying my heart out... Oh, it's ok if people were watching, one thing you lose when you have a child with autsim is any sense of embarrassment in public... :-|

 

Anyway, on the good side, we managed to get him to get his hair cut afterwards, so that's a plus... And so it goes on. :-|

[Bookworm]

 

 

I don't believe this.

Got a letter from the tribunal today: they have cancelled tomorrow's hearing. It's reset to August 20th.

 

I phoned them, and the reason is that they had only allocated 15 mns for the hearing, and with me submitting an 8 mns DVD, they realised they wouldn't have enough time to deal with it all and voila, postponed for a month.

[Bookworm]

Yeah, I guess... But I have been having kittens all week as it is, so having to wait another month... I don't suppose there'll be ANY lining left to my stomach by then. :-|

[Bookworm]

Well, one week to go and ticking. *and breathe* :-|

[Bookworm]

Well, so much for 1/2 hour hearing, I was there for over 2 hours!!!

 

And the result?............. Adjourned. I kid you not.

 

Apparently, the huge amount of case law, testimonies from school, family friends, people who do actually know my son and my own 6 pages statement comprehensively demolishing the DWP's case isn't enough if there isn't a Dr's report... :-|

 

Well, yeah. Apart from his autism, T. is actually very healthy and hasn't been seen by the GP for years. What am I supposed to do, take him there once a year so they can confirm he is still autistic?

 

Anyway, I pointed out that a CAMHS appointment in our area would take between 18 and 24 mths, possibly longer, and that the Ed psych for the LEA wouldn't be interested in following him up since he is in private school, so what to do? Eventually settled on asking the Ed psych from the private school (who has after all known him for nigh on 4 yrs) for a report, meanwhile, I must still get the CAMHS referral in action, and I must keep a diary of his meltdowns to document the when, how, why etc... Of course, the problem is that we actually seldom take him out precisely because of the behaviours, so it seems we are going to have to take him out more often and distress him and us so that we can document his distress... Oh-hum.

 

The goods news is (yes, really!) that they didn't just toss the case out, which is I think what they intended to do in the first place, so here's hoping and waiting some more. Who said it was ever easy, hey?

 

signed: an absolutely shattered Bookie who's going to go for a long nap before she falls asleep on the keyboard.

[Bookworm]

Time for an update.

 

Got a date for tribunal on December 3rd.

 

I kept a diary as requested and am about to send that in to add to the file. I have received a copy of T's medical records which, as expected, show nothing very useful, and just show that once we had him in a SEN school, they were quite happy to discharge him. Also received copy of the MDT at his school, suitably bland and neutral the way those reports usually are. My job will be to show the tribunal what lies between the cracks, the traffic light system put in place for example to deal with his behaviours, which shows the excesses for what they are and how difficult it is for the school to cope as well.

 

One thing the diary shows is how unpredictable his behaviour is, and how there is no pattern to when he goes in meltdown, and how neither the school nor us can see it coming at times. I hope that will help giving the tribunal a true picture. We will see.

[Bookworm]

Yeah well, I won't count those chicken just yet, CG. They're certainly making me work hard for it, that's for sure, presumably because I don't work hard enough for and with my kid as it is.

[Bookworm]

I'm in complete and utter shock. I am, quite literally, shell-shocked.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I won.