The assessment process, with school not on board...

[incogKNEEto]

Hi, we are at the start of the assessment process with dd, who is 8, for ADHD/ADD/ASD/something else...

So far, we have seen the gp, been referred to CAMHS (& seen someone who didn't think they could help bar four psycho-social sessions), been back to gp to be told I have health anxiety, then enlisted the help of a parent support adviser, who has met us and observed dd in school, and been back to gp again, with her, to insist on a referral to the Community Paediatrician.

That's where we're at now, just waiting for Paediatrician to contact us with an appointment, we were referred in June so probably at least another month or two to wait yet!

Following the parent support adviser observing dd in class for a morning, she picked up on lots of low level disruptive behaviour, as well as only actually concentrating for 10% of the time. I have also (last school year) had a meeting with dd's class teacher, who said they hadn't noticed any issues other than a lack of attention in class and a few social difficulties with peers. The school pastoral worker had been doing some social stories with DD last year to try and help with this. The CT spoke to the SENCO, who has decided that DD cannot have an IEP as she has no SEN, as she is not struggling, therefore any issues are just down to a 'lack of effort'. Hmm.

Can anyone advise the best things for me to do next? I am waiting to see if we get a diagnosis from the Paediatrician, although I don't know if they will refer us onto anyone else? Hopefully if she has a diagnosis then the school may have to step up a bit and agree to help! I'm pretty disappointed with the SENCO's reaction tbh, I thought the school were supposed to help every child achieve their best, not just ignore any issues as long as the pupil is getting by.

I don't know whether I should apply for an ECHP or not, or whether I have to wait for a diagnosis? I have already applied for (& got) DLA for DD. Maybe it is all in my head, and she's not that bad or different? It just feels like there is something 'extra' going on iyswim? So disheartened already . Just hoping for some advice from someone who has been through this process and survived!

You need ideally to be in a position to demonstrate lack of adequate progress. It might be an idea to make a formal request for copies of dd's education records from the school to see if they include details of all the assessment tests and results carried out on dd over the years and what sort of progress that demonstrates.

Hi op,
We just recently received an ADHD diagnosis for our son after no support from school, just lots of telling off over the last 4 years for ' not concentrating'!
We referred to Camhs via GP. I would suggest writing down all the concerns you have with examples and link to reports from school of lack of attention etc. Our son has ' got by' in the general middle of range class for the last few years but we knew he was slipping. Unfortunately, it took the end of school year for school to realise that he has made no progress at all in literacy and not 'enough' in maths, despite still not being significantly behind the national average.
We do not have an IEP as such although, after a fight, we now have an informal plan and far more strategies and equipment for him in school.
We have lodged a formal complaint about schoo's lack of action.

I would say, stick to your guns, you know your child best. We had been dismissed by Camhs 2 years previously after an initial assessment but this time got a much more lengthy assessment over several months.

Thanks for your replies. It's so frustrating isn't it? When you know something isn't right but basically the people you would think would help I.e. the gp and school, imply or even outright tell you it's all in your head!

I hadn't thought of requesting a copy of the full school record, so thanks for that suggestion Jeeves. I will do that asap. I have got all of dd's reports going back to Nursery, so five years worth, so they help a bit.

Frogs we have seen that for the past couple of years, only yesterday DD told me she had been told off for not listening/not concentrating in class, when she asked for clarification of something she didn't understand. And her CT this year is the SENCO... Who said to her last week (in front of me) that he knew she was a bright girl so he expected to see her concentrating and making the effort as he knew she could do it... I plan on sticking to it as she is already starting to need the help and support, and I can see her anxiety rising and self esteem falling .

I just don't know how to help her, it's difficult when we don't know what is causing the issues, and just see the after effects. She is pretty self contained and controlled in school, so being charitable, I guess they don't see the issues we do at home/everywhere else. It doesn't fill me with much hope for her being understood or helped at school though if the SENCO doesn't believe she has any issues!

It's almost as if they don't need to worry about her because she's bright enough to get by without working 90% of the time, so looks good for their statistics, and that's all that seems to matter to the school. Never mind that she is performing well below her abilities almost across the board.

The school has to provide copy education records within 15 school days, so make sure you keep them to that.

Are you in the South? SOS SEN has some workshops coming up on the EHC process which could be helpful - www.sossen.org.uk/parent_workshops.php

Yes, I've just read the 15 school day limit during my research, so I will keep them to it. I was just going to write and hand deliver a letter to the Headmaster later today. I'm not sure whether it needs to give a reason why I want the records though?

Those courses look great, thanks for the link, I'm in East Anglia though so might be a bit far, and most of them are on days when I'm working sadly, but I will definitely look into them further if we decide to apply for a ECHP.

No, you don't have to give any reasons for wanting the records.

Sorry, I have another query, so thought I'd put it here to keep it all in the same place! I have written a letter to the Headmaster asking for a copy of dd's education record and will take it in on Monday.

I wondered if anyone had any thoughts on whether it would be worth going for a private assessment for DD, as we've been told we won't get an initial appointment with the Paediatrician until mid-late November (referral from gp in June)? I have had a quick look online and wondered if anyone had heard of Judy Eaton, or had an assessment carried out by her?

It is so incredibly painful and unnecessarily more difficult when they don't believe you, isn't it?
Many of us have had this. Have faith, you will get there in the end - it will just be a bit more difficult.

I have been through this and it is so frustrating. It started when my ds was in nursery in the UK and continued in elementary school here in the USA. They kept telling me that there was something wrong with my ds and that he was not "focusing" in class and that I had to do something about it. I did ask his first grade teacher if she would like me to attend class with him and sit behind him and rap him on the head every time he started day dreaming....I mean really what was she wanting me to do? In the end I had some very expensive private testing done when he was 8 because they were so sure that he was learning disabled (and it was my/his fault because they weren't actually suggesting any solutions). Testing said he was a genius with some processing issues and gave a list of recommendations of how to help him succeed in a traditional classroom setting. School continued to ignore the testing recommendations, but did finally agree to assess him for G&T 2 years later than his peers (which his passed with no problem). I finally moved him to private school. Ds is now 14 and for other reasons and additional diagnoses, I am finally believed when I tell them about his special needs/genius/issues and he is finally back in public/state school getting the support he needs. I only wish he could have had it all along and that I didn't have to be subjected to the disbelief and difficulties that we went through. I suppose that's not much help for how to do it differently, but perhaps it's helpful to know that you are not the only one suffering through this and that it will get better.

Thank you for your replies, it does help knowing that we're not alone.

It is hard, especially if like me you're not a terribly confident person. I feel like I'm trying to juggle work, home, school, appointments etc with that underlying fear that I'm doing so many things at once and failing at all of them!

I also feel guilty that we didn't realise before that DD was different, so that all this would be sorted by now and she'd be getting the help and support that she needs. Mind you, many of her issues have only started to become apparent in the past two years as school work has become harder as well as fitting in in social situations. We have spent so long making adaptations to help her with daily life and we just thought it was her personality and that she'd grow out of it...I suppose I can't now blame the teachers for not spotting it or not accepting it.

I feel so helpless and hopeless about the future. Scared for DD's future prospects for happiness/success, and scared that I won't be able to help her by fighting this fight well enough

DS2 attended a school in Essex. The diagnostic route is via the comm paed in that area. They have a neurodevelopmental clinic. After seeing paed, the specialist adhd nurse did a school observation. He met the criteria but does not have a diagnosis - he has since been diagnosed with ASD. He passed the local ADOS but was referred to GOSH for a second opinion.

I would stick with the NHS if at all possible rather than go private for a dx at this point. DS2 also has a private dx (MS using the DISCO) but this was done for statementing/tribunal purposes in addition to sticking with the NHS because of speed - DS2 was referred to local comm paed in 2012 - just under 3 years to diagnosis.

Because diagnosis can take so long it is advisable to apply for an EHCP now rather than wait. DS2 received his statement before he received his dx. If dc are later diagnosed with ASD this has to be amended. DS2 is currently in a Suffolk school - access to county autism outreach is dependent on having a firm NHS diagnosis (so his referral was declined) and his primary need is recorded as BESD (with social communication needs being detailed on the statement under the 'behavioural and emotional' heading rather than 'communication').

Although the school were superficially 'on board' I had no idea of the extent and severity of the problems until external experts observed him in the classroom. The account that the teachers gave me was radically different to the one they gave the specialist nurse. Despite the CT comments being recorded in the report, the CT was not willing to repeat to me what she had said to the nurse even though I said 'I had no idea - why didn't you tell me?'.

Thanks for your reply KOKO, would you say it's still worth applying for the ECHP even if the school are denying that there are any SEN? I can't show that the school aren't meeting dd's needs under School Action/Action + as they don't agree there are any needs to be met in the first place...

It's like I'm stuck in a loop, until I can get a professional (ie the paediatrician) to say DD has SEN I can't get any help for her as 'it's all in my head' or down to dd's 'lack of effort'. So the school say they won't do anything extra unless we get a diagnosis, then they'll create an IEP/start helping her.

The SENCo actually said (last year when I asked via CT for an IEP) that she can't have SEN/an IEP because she's not a failing student... Basically, because she's smart and still performing currently as an average student, even though she's only managing to concentrate about 10% of the time... Argh, it's infuriating!

DC don't need a medical diagnosis before they can get educational support - it is supposed to be needs led. But, if you don't identify a need and/or deny that it exists, you don't have to meet it. Where there is a functional problem, focus on cause - either blame the parent or the child's lack of effort. Catch-22.

I would advise that you get an independent EP assessment (cost about £600+ don't need to be tribunal savvy) using the WISC-IV and the WIAT and including class assessment. I'd also ask for MALS (myself as a learner). If there are educational needs identified then ask the school how it plans to meet them. Any dragging of feet should result in immediate application for assessment for EHCP. You will be turned down at first request - most people are, regardless of severity of need. But the LA will send a rep to meet with you and the school to discuss how needs identified in your EP report can be met by the school. Use this meeting the agree 'all that the school can do' (which will have been given as the reason for refusing assessment). Take it from there.

You should do all of this at the same time as pursuing medical diagnosis (if appropriate) through the NHS.

sorry for sounding 'bossy'

That's OK it's good to hear from someone who understands and doesn't immediately dismiss my concerns!

I'm thinking of contacting Judy Eaton to ask which assessment methods she uses and to find out if we can afford it! Is the MALS done by school or by the psychologist/paediatrician?

I handed in my letter to the headteacher yesterday asking for a copy of dd's education record, so it will be interesting to see how she has been assessed at school so far.

Thanks for your help

I think that Judy Eaton is a clinical psychologist rather than an educational psychologist. I think you need a two-pronged approach. The thing is, even if JE gave an ASD diagnosis, the school could still claim that, despite this, there is no educational need.

DS2's current statement is for social communication in unstructured and semi-structured times (PE, break etc) plus social skills group etc. We are appealing as there is no learning support inside the classroom as the original LA assessment was purely observation and had not even assessed never mind revealed academic needs.

Yes, we had come to the same conclusion about Clinical psychologist vs. Educational psychologist KOKO. Also, to have DD assessed for both ADHD and ASD would be £1500! Which tbh we really can't afford at the moment, especially if it won't lead to any more support for DD. I think we'll hang on to see NHS community Paediatrician in November.

Well, I applied for an EHCP assessment on 6th October and I'm currently awaiting a call from an EHCP co-ordinator to discuss DD.

I'm not sure if this means they are going to assess or whether the co-ordinator is going to decide if they will or won't assess. She mentioned that she will decide if it goes to panel? Does anyone know what that means please?

INCOG I would take that to mean they havent decided yet whether an assessment needs to take place. Can you give the co-ordinator a ring and ask for clarification? It can take upto 6 weeks for them to give you an answer of yes or no. They may ring first and then follow up with a letter saying what they have decided. If its a NO, then you can appeal. I really hope you get a yes. Its a long drawn out and exhausting process and I have had to take a break from work just to deal with DS and the EHCP process. I honestly don't know how people do it if they have no support! Good luck INCOG.

Thank you. I have just spoken to the co-ordinator and she wants to take it to panel on Nov 18th, but apparently doesn't have enough evidence?

I have to ask school to refer dd to educational psychologist for a report and send it to her, as well as any other reports asap. The problem is school don't seem to think there are any issues so I don't know that they will agree, and can't show that they have done all they can do to support dd before asking for extra help via ehcp! I think the co-ordinator wants to say yes, but needs more evidence, but should it be up to me to get it?! Obviously I will do as much as I can to push it forward but it seems a bit odd that they can say that there is not enough evidence to take it forward to panel, but surely the assessment is done in order to find out evidence of needs and help needed?

Also, she said they were aware of the six week deadline but that no-one was meeting it...so that doesn't fill me with confidence!

What you have been told is bollox. The EP comes AFTER they have agreed to asses because that would be an assessment wouldn't it?

Tell the coordinator that if they need an EP report they should contact the school themselves and organise it.

Also tell them that the assessment has the PURPOSE of gathering evidence and lack of evidence only strengthens the case for assessment not the reverse.

Put it in writing after the conversation. You are being fobbed off.