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)

Oh GMS dunno what to say but couldn't ignore your post xxxx

Iam just at the beginning of all this stuff (he brown dla form plopped through my letterbox today and I shall have to fill it in I suppose.Haven't dared look at it yet)

I hope that tommorow brings you a better day.Two major things in one day,it can't get much more crappy can it??

Sending hugs xxxx

Hopefully someone with better knowledge will have more useful advice,Wrinkly xx

oh give me sleep, I wish every government minister with anything to do with SEN could read your post. I wish Lord Adonis, head of all things to do do with schooling could read your post. Why do we have to go through so many hoops, when having an SEN child is hard enough on its own. Raising a NF child is just a doddle compared. My heart goes out to you and I hope you are feeling a bit better today. I know what it's like to feel like, yet again, you have to gear up for a fight. All my strong vibes and love to you.

children receiving DLA do nto need to have a LD, after all cancer (as an example) is not a LD is it? yet it still qualifies! the poeple on the phone though- they're just call handlers, they know nothing about DLA.

have to say that's why we never asked for reconsideration of both boys refusal for mobility, were convinced they'd pull it all!

You need to speak to the NAS advisor for your area if you have one, who can write a report and help with tribunal. Do you have contact with someone like that?

What horrible timing for you GMS It makes me so angry that we have to fight so hard just to get our children the support they need and are entitled to

How are you feeling this morning?

sorry this is all so crap. That call handler is a twat. dd has severe cerebral palsy and no LD but gets full DLA. Can NAS or the CAB help?
Just seeing the forms makes me anxious and tearful nowadays!
LEA are tossers too by the sounds of it. IPSEA can help with that or Supportive Parents. Don't do it all alone.

I have no experience so this may not be the most helpful suggestion, but can you go to your MP's surgery (ideally with your child in meltdown) and say right, as a contributing member of one of the richest societies in the world, what the FUCK are you going to do for me and my child?

that can actually work ninedragons- helped ds3 with his statement anyway

It feels liek years since I posted on here, it probably is.. but I'm outraged for you.. I agree with ninedragons suggestion about getting an MP on side - or even just your local councillor - they can carrry a lot of clout just because of their position.

The DLA can be beaten - you need a copy of teh Decision makers guide- if you can proove and expalin why he meets their criteria it DOES work. I have no idea where you'd find one -I was emailed relevent sections and he now after 2 years of applying nad trying gets hgher rate for both care and mobility.

Get help from as many places as you can, its not goign to be weasy to win these battles, but your son is entitled to and NEEDS this support so they ahve to be fought, and as a rule I've found no one will fight for you, but they'll back you up and help if tehy can.

Horses arses
DD has not learning disability ok her eyesight is dire, but she needs very little supervision at school and no special ed at all... yet (she is reception)

A child who needs the level of suport your son does
FFS the mind boggles

cerebra have a good guide to DLA on their website IIRC?

GMA i get dla and carers for DS so its totally wrong that they said this and odne this to you. As for statement and LEA i totally understand where you are coming from, I have just emailed my MP with a huge letter about inclusion and lack of support and how parents are having to fight for their childrens rights. Its all wrong and i know i feel same as you right now. (((hugs)))
email if you fancy a moan or are oyu on msn???? slittlejohns25 at hotmail dot com

I am so sorry the dla and statementing powers that be are making your life so unnessesarily difficult! It must be double torture for you on top of dealing with school!
Ive been keeping a diary/ list to help supply practical evidence (with good points just for us to keep our spirits up) for DLA because I suspect we will be turned down but I dont know if it will help. It is the interaction of special needs that make our children so unique and needing constant high level support, not the labels they do or dont have!

Hope you are feeling better today!

i 2nd the cerebra guide along with peachy, you can ask for a copy to be sent to you, i used it in filling both dc,s dla forms and got high rate care and mobility for both, ds ha AS but no learning difficulties so that is a load of rubbish.

so sorry you are going through this, its not fair, be kind to yourself and when you are feeling better kick their arses.!!!!!!!!!

My arguement is that ds may be bright and intellectually capable of the work but his SN prevent him from accessing the national curriculum adequately and thus he is not reaching his full potential. They're such a bunch of bastards

I had ds annual review today which seemed to go really well although the SENCO from the school he will be attending form sept2008 didn't bother to turn up I'll just have to see whats written in the amended statement now. Somehow I feel that another battle of my own may be looming

My argument was that if ds1 lost it in class and killed someone I would hold them personally repsonsible and sue their arses off- somehow that worked with the LEA [blsuh]

God I am turning into a bitch

ooooooh not sure if this is good or bad but you know that email i said i sent to my mp.......well have had a reply asking for DS name and DOB and school and that mp will take the matter up with LEA! Scared now becasue i have either started something bad or good........ agh

Hooray, that is a fab result bonkerz. The LEA will do nothing unless they think their job or pay rise is in danger, then they'll pull the stops out!

Thank you all for your messages. Have calmed down a bit now.

Peachy - hadn't heard that NAS did things like that. Will contact them in the new year.

Got all the DLA guides...I KNOW he's entitled to the DLA...filled in the DLA appeal form and sent it today with a very scathing letter pointing out their incompetence and the incorrect application of the law (the learning difficulty thing) and pointing out that he's always been eligible before and his needs have worsened!

I enclosed:
-Statement - with the 7 billion 'needs' identified
-All school reports/ annual review notes, including school's views that he's a danger to himself and others, hence having fulltime one to one support
-the CAMHS notes on him, going back 18 months with the ADHD dx and ASD dx as well as reports from interim appointments, with psychs mentioning how much hard work he is in appointments too. Oh, plus the 9 page ADOS referral.
-the letters psych wrote to Council to back up why J needs a Blue Badge (succeeded on that one...after appealing. Why do I have to appeal for EVERYTHING?)
-ed psych reports
-child in need meeting notes and plan

• the paed stuff from before CAMHS
• the OT report, with the sensory processing stuff and the 2nd centile motor skills stuff

I did send all this last time too, but I've helpfully highlighted all the relevant bits that show he needs more care than others his age, stuff like "he is a danger to himself and others and needs constant supervision to minimise self-harm and injury to others. He receives 31.5 hours of teaching assistant support, 45 minutes OT and 55 minutes of Behaviour Support Service time per week. Restraint must be used if necessary" (from school reports...oh, but silly me, everyone must have that on their school reports cos J is no different from any other child his age

I'm sort of OK with the DLA one because it was clearly a mistake. One which I can only assume will be rectified at the appeal, but that might take 3 months and am screwed for money in the meantime. J is not allowed to after school club because of health and safety and his after school care (1.5 hours a day, at our house) costs £400 a month so DLA is all that enables me to work and afford the mortgage, iykwim. But how can this child not be entitled ffs?!? They've made a mistake and I hope the muppet who made this latest decision gets severely told off!

The Statementing thing though is annoying me because the Tribunal probably won't be until June and by then they'll (LEA, I mean) have probably done something else to block me from going through with it. They are going to be up agains the CAMHS consultant psych and the headteacher of J's school as Tribunal witnesses and the LEA have no evidence against doing the thing I am requesting: put the full time support and the OT into the Statement. They just don;t want to because it will cost money. I'm just so lucky that J's school are willing to fund full time themselves for now.

Then Social Services still haven't responded to my complaint...next stage, I reckon. ANOTHER form to fill in...maybe I'll wait till I've got one of the others out of the way.

I like the MP idea...he was very helpful last time.

It helps to have people who know what this is like. My friends don't quite follow all the various forms and tribunals and just say I should be a lawyer as I argue well in the letters. I shouldn't have to though. None of us should. I am so so tempted to go to the press but could upset J if kids at school found out through parents and would DEFINITELY harm me professionally.

Thanks again, all. At least I have good chances of winning both of these, esp. the DLA one.

They havce a lady ehre who tey employ part time who comes out to ASD families if you need support- she's supposed to be here afte Christmas after I ahd a near breakdown on the phone when SS refused us support (dreading DLA application in summer as Paed refuses to see HFA kids after 2 years post DX and SS won't support HFA, so currently getting no help at all- despite having a knife obsesin atm, kicking his brotehr in the ehad yesterday and claiming his NY resolution is to kill ds2....) (we've got a diary going, original dx says constant 1-1 and we shall take to GP for everything / ask for repeat referaal if needed)

getting loads of stuff through for ds2 so should be mroe straightforward this time- they refused first but backtracked at appeal based on him being incontinent- we actually have paperworkm stating this now which should help

J's also got a knife obsession at the mo - that was what prompted Child In Need meeting. He had one when aged 3 too - kept 'hitting' me and kids at nusery with knives/ scissors and throwing them - but at least he was restrainable then. Not now!

We were also turned down for a disability assessment and carer's assessment by SS (though they did offer 4 hours of respite a week, but I'm not after respite) because HERE, they will class any autism dx as a disability, but not ADHD (which was the only dx in place when I applied) because 'ADHD is not a complex disability'. Now even with the autism, they're stalling and saying they want to see the ADOS results (test in 2 weeks) first - LEA is doing the same - one of their stupid reasons for refusing to up the hours in the statement.

Sounds like you're having an interesting time of it too, Peachy!Why won't paed see your ds? Is it CAMHS? They're all too quick to discharge; I know my friend's son got discharged almost straight away after dx.

You said earlier that you have never gone for reconsideration in case they took it all off you - is that common then? How did I not know that?

00000000000000000000000000000000000000000 - those are the hoops we have to jump through, and they keep getting higher and higher...
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Soon I'm gonna get all the hoops and shove em round various people's necks!

Its digusting we have to fight so hard for our kids. Im beginning to think this mp thing may be a good way of getting our plight into the limelight IYKWIM. There are so many parents of SN children out there who are not as strong as we all are (although i know myself i dont feel strong alot of the time) If contacting the MP only shows LEAs that we wont be fobbed off and ignored then i say we should all do it. I too am good at writing letters and sounding professional unfortunately face to face i turn to jelly and become too emotional!!! i feel a big campaign coming on....MP today....Press tomorrow. Chin up ladies....MUMSNET MEANS STRENGTH

Yes. I am the same - I can do the written argument well but babble and cry face to face.

It's just having the time and energy. I don't have enough of either any more! When I have some more of both, I think the MP and press route might have to be the way to go. Also the Ombudsman - I have even looked at their complaints form and it's very very easy!

I remember the year long battle to get the statement. I was lied to so many times and then was so pleased when the statement finally happened, even though 22.5 hours weren't enough, it was a start. Of course, that was only the start of the crap! Three and a half years on from asking for the assessment for the statement, I have a acquired a garage of SEN paperwork, a cynical attitude and lots of anger that everything has to be a fight.

Don't we have enough of them in our own homes?!

I'm so pleased you've got your fight back.

Not that you should need it. It absolutely horrifies me that such a rich country can treat its most stressed members so badly. There was a case in Australia earlier this year in which a woman snapped and suffocated her autistic son with a pillow. She was tried (and acquitted) for manslaughter, but I thought Jesus Christ, a society that allows things to get to that stage is inhumane.

You really do have my sympathy and admiration.

I feel your pain

We haven't started all this yet (statementing procedure only just begun) but I am bracing myself for a battle. Your story brings it home to me just how bloody difficult and unfair it is.

I hope you keep your strength and manage to get what you all need. Best of luck.

I'm not as stronga s I would need to be sadly- I distinctly remember the day is at at the top of the stairs working out if I could be sure of not ending up in a coma .

He was discharged by aped, CAMNHS never even seen him. We have been offered a few hours a week at a Cm for him funded by SS but there will be other kids there and I am not puting them at risk. We had applied (at paeds request) for DP's so he could ahve someone to take him out and teach himappropriate nbehaviour in shops etc- DH's shifts mean that if we go out we have to go as a family.

We had a big head off this morning as I forced him to batha ctually- he kept growling and trying to hurt me and sdaying he was going to kill me, and I amazed myself by staying calm and just repeating 'I am in charge as I am an adult, you are a small child and will do what I need you ro do'. Stage one of battle won. Only another decade to go!