So hate DLA and LEA. Honestly suicidal today.

[daisy5678]

Hate LEA most (because they're just playing Tribunal Bluff - a fun money saving game for all LEAs to join in - shame it's not so fun for the parents) - despite having about a billion letters and documents from school saying J needs full time support, the Panel said NOOOOOOOO and so we go to Tribunal. Person giving news was like, 'but he's still keeping the 23 hours and we put in the bits you asked us to about liking music and stuff in the (7th) Proposed Amended Statement'...yeah, cos that helps, thanks.

School called me in for 2 hour meeting yesterday because J'd attacked loads of staff in a meltdown. Next time = exclusion.

And DLA - J's been getting it since the age of 3 - middle care and low mobility. Renewal was in October - got awarded 5 years at same rates but asked for reconsideration in terms of care because it's 100% of daytime and much of the night and the *%$W£s wrote back today with the results of the reconsideration - NOT ELIGIBLE for DLA anymore! Apparently he does not require any more care supervision than another child his age (so why the hell is he statemented for 23 hours of 1:1 support then you muppets?) and the woman on the phone said he doesn;t have a learning disability so he doesn't qualify - I said, well he's always had the same dx - ADHD and now sensory processing and ASD too - she said they're not LDs! I said, why's he been getting DLA for 3 years then?????

So got to go to Tribunal about that too.

I'm sure I'll win them both - the DLA one seemed like a joke at first, I have SOOOOO much evidence from SOOOOO many professionals about his needs and never had any problem before with DLA - and ditto for SEN Tribunal, but I don't have the energy any more to keep quoting legal sh1t and crossreferencing everything.

Today is actually one of those days where I could literally just slit my wrists without any second thoughts if I had no J to consider. Mind you, if I had no J to consider, I wouldn't be feeling like this. He is my superstar, but why can't these bastards actually just do what they're supposed to do and HELP me?

Sorry to rant. Just so so bored of this repetitive cycle of crap (AKA my bloody life)

I have had the adult child argument for 2 sloid days now and im fed up of it. reached a point yesterday when i thought i was seriously going to hurt DS because he had just been in a rage all day. We all have our moments even hours when we feel like we are awful parents and that we cant cope but i suppose we all Do cope and we all love our special children.

I adore him, but I'm also scared of him and I know I should be, sadly. ormally I put myself between him and the boys all the time, bit difficult with bump but DH's work hours change next week so will rarely have DS1 on my own- sadly a good thing. Won't get to see as much of dh either (he will work more, shorter shifts so less days off) but it ahd to be done.

Planning on asking GP for a Psych referral, ds1 has never seen one as Psychs / CAMHS etc not involved in Dx procedure round here.

Got SS letter back today - they are assisgning a Disabilities Team Social Worker to phone me in the new year to talk about J's "presentation, difficulties and diagnoses". They've backed off waiting for the ADOS test results and will decide whether to do the social care assessment on the basis of Joshua's needs/ presentation.

Lots of different words used to dress it up, but the gist of it seemed to be - we apply blanket policies and shouldn't, everybody in education and health thinks we need to help you so we'll do it but pretend we'll do it because we would have done anyway (even though they wouldn't because of the blanket policy) because you're making a big fuss.

So 1 battle down (till they have the phone call and decide not to do core assessment - see how optimistic this is all making me?) and 2 to go!

Peachy - our CAMHS psych is amazing so yeah, think it would be worth asking for referral. She even attends meetings at school and is willing to appear at Tribunal and if I phone in crisis period, she calls me back that day and can usually make time to see us. She is the ONLY professional out of ALL the many involved who actually seems to do anything without an ulterior motive.The rest do nothing without thinking of the political fallout first. Who DID dx if psychs don't get involved? Paed?

Peachy and Bonkerz, we seem to be in same boat re: the violence - must be esp. hard for you Peachy with the bump - I think almost harder than the violence is the negative feelings it gives us towards our kids, which you both refer to and which I mentioned in my first depressed post. That then in turn makes us feel even worse about ourselves for resenting/ disliking/ finding it hard to stay calm with our DSs, which makes us even more stressed! We can't win. Aaaarghggh!

big vicious circle TBH. I find myself feeling resentfull someties by the amount of time i spend on DS. Then i feel guilty because it is not DSs fault. More recently i have been beating myself up about a passing thought i had about what life would be like if i hadnt had DS. How stupid is that! I mean i love him so much and would never be without him BUT sometimes i long for a break and some time for me!

I know what you mean, I think. In about 18 months I will probably go back to work for a while and Dh take a break- he will study and be home, much like I am at the mo. TBH I think if ds1 doesn't calm down then, once he gets to be a big lad (he's extremely fit and sporty) it may mean boarding which I ahte the idea of, and would eat all my wages leaving us with whatever DH gets when he's working FT after his degree, but there's a certain acceptable risk we can't go beyond.

Still 5 years or so before we need to think hard about it.

givemesleep I'm at what's happened re the DLA.

I've been getting DLA for my DS since he was 7. He is now 18. He also has ADHD but we don't have anywhere near the "evidence" you have. We just see one consultant we haven't seen for over a year, and a mental health nurse. Although he has a TA it isn't fulltime (tho he says his classes aren't big enough now to warrant one in lessons, 6th form 1-8 pupils per class )

It really isn't fair that parents with SN kids have to jump through all these extra hoops. Perhaps someone in authority will read one of these threads (everyone seems to be swotting up on MN just lately) and actually do something.

If we all keep mentioning names of ministers I reckon they will google search their names and to back and read these messages to see what a hell of bureaucracy SEN parents live with under the present system. So, Lord Adonis, David Cameron, Ivan Cameron, Gordon Brown, Sarah Brown wife of Gordon Brown, Ed Balls ....you never know, it might work!

What bugs me is that the DLA was the ONE thing I've never had to fight for - just got awarded middle rate care and low mobility without any hassle other than filling in the damn for. EVERYHTHING else - statement, blue badge, SS support I've expected to fight for. But to go to nothing for DLA...

Still, as you say NEHFAWX, at least I've got lots of evidence, all testifying to the danger he presents to other people if left unattended (and even with support, tbh) - his Child in Need plan (written by school with psychiatrist) even says he must never be left unattended at school or home.

Oh well, at least I can hopefully look forward to a big backpayment when they either look again or get to the appeal stage (I think they look again when it goes to appeal anyway, and I'm guessing the supervisor will look at the statement of reasons saying turned down for not having a learning difficulty and go and slap the reconsideration decision maker round the head a bit!)

I think Gordon Brown and Ed Balls might be cc'd on my letter to my MP, aquariusmum - good plan!

Michael German and his Wife Vanessay (he's the local Assembly member) helped us loads with statementing in the past, for ds3.

Sadly our MP Paul Flynn has a reputation for being terrible with casework- but maybe if he reads this he'll want tocchange that? (mind you, he's not ben well lately).

The fighting is ridiculous. Were it not for that, I could cope. The rest is within acceptable limits- yes ds1 is violent etc but I can accept that's not his fault; DS3 is the opposite but needs more in the line of personal care etc and just as much supervision (1 who never goes to sleep and one that wakes at 3am- what jolly japes LOL!)

Peachy: "The fighting is ridiculous. Were it not for that, I could cope. "

I could not agree more.

So...DLA sent me a letter, dated yesterday, esplaining the reasons for their decision not to award DLA when I asked for the reconsideration, reiterated the bobbins about not having a learning disability and not needing more care or supervision than another child his age blah blah bollocks blah...

...so I rang DLA to ask what their definition of learning disability is and how many children aged 6 have a Statement of SEN and full time support at school...got a nice lady who sounded as confused as I was and then said, well, you're appealing aren't you. I said yes and she said, hang on, they've changed the decision again while preparing the appeal: back to middle rate care and low rate mobility.

So now do I stick with what we were originally awarded or go for the appeal to try to get the high rate care that he's clearly entitled to (awake for hours at night, needs constant supervision if I don't want the house flooded or the clothes to all go in the bath, and supervised all day to prevent danger to him or to others)??????

What's the chance of the appeal being just as random as the decisions and having it all taken away again????

givemesleep,
dd was awarded low rate care and low rate mobility originally.

she has CP, suspected ASD and asthma/eczema.

i told them i was going straight to appeal and in the meantime they awarded her high rate for both.

i know they dont like going to appeal and i remember saying to the woman on the phone well i dont care when i turn up with dd at the appeal i think the tribunal panel will be disgusted and i hope it filters down to whoever decided NOT to give her high rate.

I am glad they have given it back GMS!! It depends I suppose on how much energy you have for appeal/how much you need extra money. My hunch is that they'll think they've done you a huge favour by reinstating and will say no at appeal. But I don't really know. They have obviously made a cock-up on your case, so you could do the old "I'm going to let the press know what a mess your dept is in" - that generally works well, as I used to work on the other side in a PR department!

givemesleep: considering all the other fights you have to face you have to think about this seriously. Wahts the money difference between middle and higher rate????
If its alot of money then go on and fight. If its not much then maybe focus on the LEA and when you win that tibunal maybe with a statement for full time oyu will have a stronger case with DLA.
Im so sorry oyu are having such a hard time of it.

I got reply today from Mp , he had contatced CSIS on my behalf who are investiagting the issue. Have you written to the MP yet???? Wish i could help you more.

Thanks for your replies guys. I feel like I don't need the hassle, but could do with the money to pay for the £100 per week that his after school one-to-one costs (from 3.15-4.30/4.45!!!!)

I agree, bonkerz, that the SEN tribunal has to be the focus. AM, I would make that threat if they would care - I know LEAs care - does the DWP?? Nice idea, because the letters are hilarious (in a messed up way) because there's clearly no consistency between decision makers - it's a big old lottery!

Bonkerz: glad your MP has responded - who are CSIS? I will start MP letter soon - twice now tonight I've been advised to on here, so will do ASAP!

erm i may have got the letters wrong! Children information services! LOL no wonder oyu couldnt get it!
I could email you copy of my letter if you want and i sent my emails through a brill website. will pass it on if you want. email me. slittlejohns25 at hotmail.com