Dipping my toe into the murky water

[Athena]

Hello,

 

Introducing myself, DD does not yet have ANY formal diagnosis of ASD, but we have been told verbally that by Ed Psych and Paediatrician that they believe she has ASD, as well as AD and Sensory Processing Disorder/Dyspraxia.

 

My gut/parent feeling is that she does have ASD, although she has good eye contact and can empathise with others she is very social awkward and although she wants to play with other children, doesn't seem to know how to, even when other children come round to play - especially as they don't always share her enthusiasm for lining up rows and rows of toy cars!

 

She is on School Action Plus, hasn't met any of her IEP targets and the school have suggested that she needs a Statement of Special Educational Need. They are also going to apply for Exceptional Needs Funding, as they have NO money to pay for the 1:1 classroom support that she needs.

 

BUT, without a formal diagnosis, there is no funding! What is the best way to "push" for a diagnosis? Should I chase up the Ed Psych or the Paediatrician?

 

Can the school press for a formal diagnosis?

 

I am just so frustrated that the school agree that DD has severe and complex learning difficulties, yet there is no money available in the SEN budget to provide the help that she needs.

 

If I have posted this in the wrong place, then Mods, please feel free to move it!

[NickyB]

Hello Athena and welcome

 

As far as getting a diagnosis is concerned, I would keep pushing both the ed psych and paediatrician, and also have a chat with the school SENCO. Thankfully, we didn't have to wait too long for DSs diagnosis, but I did have to keep pestering everyone constantly. I think they got fed up with me in the end, but I don't care, because it got things done Also, I'd keep records of everything that's been said, so you can refer back when you need to.

 

I hope the school get the funding they need soon, and your DD gets the support she deserves. Good luck with it all.

 

Take care <'> <'>

[smiley1590]

have dyspraxia A.S and snesory processing difficulties due to ma A.S at school there no support and help for me there especially not right ones for me on 1:1 bases i was only officially diagnosed with A.S at 14 years old dyspraxia was lil younger 6-7 years old peadtrician n SEN didnt want to give my parents diagnosis they had to fight to belive in but had cheek to call my mother 'overprotective'

 

always known i different to other kids they didnt even pick up on A.S though until too late too much hurt and harm been done i think should keep pushing ed psych and pead too as help and support so vital having lack of educational help and support affected me years later (low -self esteem ,bullying etc) knock on effect it has is so damaging and crushing to everyone involved jmy parents couldnt even rescue me as much they want my heart breaking me crying and frustrated isolated lucky me and my family determined to beat the failing systems everywhere in place!

 

i think you should kee on about statement otherwise won't get individual help and support you feel she needs her complex needs need to be urgently recognised they can't igorn it! as inclusion rights get your ed pysch or pead write a letter explaining difficulties listed explaining fully in detail make your concerns heard DON'T TAKE NO FOR AN ANSWER! keep insisting something is done keep banging on doors or they jus forget you're there or done think your girl needs extra help and support! keep strong for your daugther i thank and so grateful for my parents not giivng up on me like they did! your daugther will be the same with you don't let them shut doors in your face keep at it however hard and difficult keep chasing round until you get answers somehow! don't let systems affect your child (negatively!) like it did with me! the earlier support and help put in place the better and stuck with mnot changed! yes scholl can press for formal diagnosis if they aggree with your decision of it!

 

hope all goes well let me know how it goes

take care

luv ya loadz

hope this story of systems about me helps u and your daughter get help and support you so desperately need!

good luck thinking of you!

KLX

[Athena]

NickyB thank you for the warm welcome and thanks to Smiley for sharing your experiences, I shall certainly keep banging on doors, although I also feel like I want to bang heads together too!

[Kathryn]

Hi Athena,

 

Welcome to the forum.

 

When I saw the phrase Exceptional Needs Funding I guessed where you were from, even before looking at your profile. I'm from Herts too, and boy did they give us the runaround....long story. They don't give out statements lightly, the words "blood" and "stone" come to mind, and the exceptional needs funding is a bit of lottery. You may get it, you may not, and even if you do, there's no guarantee your daughter will keep it and there are no built in legal safeguards.

 

You can push for a statutory assessment yourself as a first step to getting a statement. There is no legal requirement to have a formal diagnosis of anything first, although obviously it will help, and the more professionals who can back you up, the better. It helps if you can show your daughter has been on SA+ for some time and that the school have tried hard. If the school support your request, it helps.

 

Re diagnosis, I would have thought the Paed is the best person to approach. The EP can't give a formal diagnosis. If the school can put pressure on too, that might help.

 

K x

[Athena]

Hi Kathryn, thank you for the welcome! Yes, I have heard that my LEA are, to put it mildly, not exactly the best when it comes to SEN provision...

 

I also understand that they were challenged by IPSEA in 2007, but I haven't found out the outcome of that, if you have any info on the current position regarding the legality of their SEN funding, maybe you could send me a message - I don't want to get kicked off the forum for anything that may be construed as libelous...

 

I didn't realise that the Ed Psych couldn't diagnose, so I have learnt something useful already and it is only my first post!

 

Is it only our LEA that uses "Exceptional Needs Funding" then? When the SENCO described the process to me, it did sound very much like a lottery and pure chance if the District Group agree to the funding.

 

As I understand it, the school can apply for a Statutory Assessment, but it is better if I do it myself, with the school's support, as I would have a right of appeal to SENDIST, but the school would not?

 

I have been trying to do my homework!

 

But I do realise that this is going to have to be a very steep learning curve, it I am to do my best for DD.

[smiley1590]

my parents often felt like banging heads together the years my parents fought for me over all kinds of problems arise!

[bid]

Welcome to the fporum, Athena

 

Another Herts person here!

 

We did get a Statement and a residential special school placement, but that was before the concept of Exeptional Needs Funding

 

You don't need a dx for a Statement, as it is based on the child's actual needs. What the school does need to do is show the LA that they have gone through the process of SA and SA+ but the child's needs are still not being met out of the school SEN budget before a Statement will be given.

 

Your SENCO should have some paperwork that's a sort of 'tick list' showing the route to Statementing. You could ask to see a copy and get her to talk through the list in relation to your child.

 

Good luck, and keep us posted.

 

Bid

Edited March 7, 2009 by bid

[isme]

Hi, sounds like you have a battle on your hands.. Good luck!

[Kathryn]

Is it only our LEA that uses "Exceptional Needs Funding" then? When the SENCO described the process to me, it did sound very much like a lottery and pure chance if the District Group agree to the funding.

 

As I understand it, the school can apply for a Statutory Assessment, but it is better if I do it myself, with the school's support, as I would have a right of appeal to SENDIST, but the school would not?

 

Other LA's have introduced a similar system I think, but may call it something different - I don't know of another LA that calls it Exceptional Needs Funding.

 

You would have the right of appeal whoever initiated the process, so it doesn't matter from that point of view. If the school are willing to do it, let them, but if you feel they aren't going to get round to it any time soon, you may want to get the process underway yourself, and get the school to support you.

 

K x

 

[lynne]

 

 

I would ask the paediatrician to refer you to CAMHS as she/he will not be experienced to make the diagnosis and is just wasting time. If she/he does not refer you than go back to your GP and ask them for a referreal to CAMHS (lcoal mentral health team) or ask them for a second referral to Community paediatrican.

 

Within the NHS if you are not happy with the diagnosis or treatment you have the right to a second opinion. There are other people on here from your area so they may recommend who diagnosed there children (if they were happy with the service).

 

[smiley1590]

CAMHS are alright at assessing as thats who assessed and diagnosed me ! but supporting long term wise i feel it doesnt work! like the system deos i belive the system is failing and believe persdonally the NAS better the AS people i know n MH people say that CAMHS negative situation to be in! i been with CAMHS for 2 years then referred to adult services they all very weak not very regular or to meet indivdiual needs paeatrician wasnt supportive and understanding of my dyspraxic diagnosis from my mum teacher and him called my mum 'overprotective' anyway good luck hope you have better support!