Statementing buddy?

[gravelchops]

Hi my son is currently being assessed for a statement. He is 6 and has aspergers. I wondered if there is anyone on this board who has successfully won a statement for their child with aspergers, having had opposition from the LA. I am currently trying to make sure we are getting everything we need to secure the right help and funding. It would be great to get the support of someone who's been successful. thanks.

My son has Aspergers and has a statement (with 32.5 hours support). We applied for statutory assessment but the school supported us, and most unusually the process went very smoothly for us.

What stage are you at?

School weren't doing anything, so we applied for a statutory assessment. We were refused so applied to tribunal. The LA then agreed to assess. The LA said that they would contact all the relevant experts (S&L, physio, OT, paed etc) to request reports.
Stupid me thought that the LA would arrange for my son to be seen by all these people. Today I phoned OT / Physio, they said that as my son wasn't on their caseload, they won't be sending a report. Its up to me to re-refer. The system is farcical.

I think the system is that relevant bodies will only report on children who are known to them if that is what they have been asked by the LA to do. If they have been asked by the LA to assess a child then that is a different kettle of fish and then they should see him.

Has your ds been seen by SALT, physio, OT, Paed and so on? If so they should send a report on him. If he isn't currently on their caseload they can't report on his current situation, but they can (and should be willing to) report on his 'historic' situation -- ie what he was like when he was on their caseload. I take it that you have of course sent in copies of all the reports you have?

Obviously he can't get a new referral because there are strict time limits for reports to be recieved and a new referral can't happen that quickly (in my experience anyway). I think you are being fobbed off, because they really should be able to at least send a copy of any report they sent to you.

Reports on what the professionals concerned already know is part of the assessment, and usually the other part is that your child is assessed by an educational psychologist. Has that happened yet?

My 5 yr old DS has AS and has just got a proposed statement through offering 34 hours a week 1:1 with a teaching assistant (we are asking for placement in an ASD unit at another school, though, so the panel are reconvening on Friday to make a decision on this!).

I'm really sorry you've had such problems with getting your son seen by professionals. Unfortunately, if there is one thing I have learned from this arduous process it is not to rely on or take at face value anything any 'professional' says. This is not because they are all evil bastards conspiring aginst you 9although some of them may be ) but because (as is often the mantra on the MN SN boards!) - you are your child's best (and often only) advocate.

In our case, it was about 15 months from me getting a GP to agree to refer to a Paed to us getting a diagnosis and the LA agreeing to assess. The diagnosis was the really tricky bit for us, as he seemed to be batted back and forth by the health professionals for months before anyone would actually dare to mention ASD. In that time, he was seen by CAMHS and a SALT, and his school got a lot of advice from advisory teachers from a local special school, an OT and various other professionals from the LEA. Unfortunately, for us, it had to get to crisis point (repeated exclusions from school) before the LEA fully came on board.

When I made the application for SA I went completely OTT, wrote a hugely lengthy piece of parental advice and copied in reports etc. This was just at the rquest stage.

I also got hold (ah, google!) of email addresses for all relevant professionals and completely invaded their professional privacy (you know how they hate email contact). I wrote repeated updates on how poorly DS was doing at school and how desperately he needed the statement and cc'd everyone and their dog in. I also phoned and cried and cajoled to get him bumped up waiting lists, so that he had seen everyone he needed to see by the time SA was carried out.

It was exhausting and, at times, my mental health probably suffered (the rest of my life certainly did - I had to take huge amounts of time off from my university course and defer exams etc).

When they agreed to carry out an SA, I didn't leave a thing to chance. I insisted on meeting the LEA Ed Psych before she saw my son to advice her on our perspective on things. I emailed the Paed to try to impress on her the fact that the statement was crucial and that her medical advice must reflect this. I copied in every report, meeting minutes, letter etc that I had and wrote a 16 page parental advice.

Madness.

It worked, though.

I would be more than happy to advice you on anything you aren't sure of. Our LEA is notoriously tight with statements, and I learned pretty quicklly that i would have to pull out every stop and try every trick in the book to get what I believe my son needs and deserves, even if it makes me look like a crazy lady...

I have a DS aged 11 with ASD. My LA also initially refused to assess last year but agreed once I'd lodged an appeal.

We have a final statement now but it's going to an appeal hearing again (next week, yikes!) for parts 2, 3 and 4.

DS also didn't/doesn't have NHS SALT/OT input and the LA didn't seek advice from them. Our LA got advice from their EP, our (private) paed, NHS paed, school and CAMHS (we were already getting treatment from CAMHS).

I've depended a lot on independent reports though. I have private reports from SALT, OT, EP, psychiatrist, BIBIC. Even if the NHS did do an assessment on your son, they wouldn't necessarily put in recommendations that would be useful to you (specific and quantified) and they often play down a child's needs.

I should say, in our case the school were supportive, which I am sure helped matters. When I say 'supportve' I mean they would have applied for SA if we had not, and were happy to write a meaty piece of advice to the panel and copy in all IEPs, incident logs, letters of exclusion etc.

The SENCO was also brutally honest with me about what the LEA would require in order to carry out a SA. He advised us to 'paint a picture of DS on his worst imaginable day', as difficult as it may be (and it was - made him sound like a devil). He also told us to throw in lots of phrases like 'longstanding and complex special needs that require full time 1:1 support' into our parental advice, in order to send the message that we were asking for the moon (and that they might at least offer us the stars, iyswim).

On the other hand, the school have excluded him repeatedly and the headteacher has contacted her union with regards to 'protecting her staff' from my wayward five year old . As the SENCO rightly advised us, the school have to have been seen to have exhausted every option, got almost full time support in themselves form their own budget and prove that the situation still isnt working, for the LEA to agree to fund the support that is in place anyway. Very frustrating!

One last thing - when the SA was carried out the LEA only sought advice from:

1. me
2. the school
3. the Paed (re diagnosis)
4. their Ed psych

If I hadn't copied in reports from the SALT, OT, CAMHS, advisory teachers etc, they wouldnt have sought it. Unfortunately, it was left up to me, and I think this is a real crime. There are plenty of parents who don't speak good English, arent highly literate, or are just very busy with work and other children, and it seems so unfair that the LEA can get away with overlooking these families simply because for whatever reason they didn't make it their life's mission to photocopy and post off every bit of paperwork they have on their child.

Really agree with ReasonableDoubt's last post. Our LEA asked the same list of people for advice plus Social Services (and as we're not known to them they didn't bother to reply). The report from Paed was pretty useless, very thin indeed (though I don't blame the Paed as she has a ginormous caseload).

The school did support us and this was really crucial. In fact I personally believe it was the SENCo telling the Ed Psych who did ds1's assessment (in our hearing so this is how I know) that ds1 was found licking a snake in the classroom that really swung it .

But seriously, you do have to assume that the LA aren't going to do anything for you, and make sure you give them every bit of information you can, and write your own advice really carefully.

As RD says you do have to write it as if every day is his worst day and give specific examples/evidence from the reports you include for every point that you make. (EG ds cannot hold a pencil properly as OT makes clear in report dated x encl on p x).

You probably know this already but IPSEA/SOS:SEN are great for guiding you through the whole process.

Thank you everyone for taking the time to reply. I am going to read and digest all your information and take on board your advice. I have been fighting for more than 2 years to get to this stage. I've got loads of reports / evidence going back the past 3 years (which the LA had when they initially refused to assess) but nothing new since they agreed to assess (not enough time to get new referrals). I am hoping that recent meetings with Ed Psych and Autism team will be enough to get the statement. They acknowledge all his problems but will that translate into concrete support or are they just fobbing me off?? (I dream of getting him 35 hours one-to-one support). I feel emotionally overloaded by the whole process and we are only got past one hurdle so far.