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Where to start accessing help - HF ASC diagnosis in 10 year old

9 replies

Pheasantplucker2 · 21/09/2018 14:17

Hi all

We've recently had an assessment of our 10 year old dd by an ed psych, and they feel she is HF ASC.

I'm feeling a bit lost, and don't know what to do or how to help. The ed psych has recommended we don't tell DD the diagnosis until she can meet with her mid Oct, in the meantime we have to look for secondary school in the Hertford area (any advice on that?) and look for support for her.

We've been told by the ed psych that there's no point in applying for an ECHP as they're rarely given in Herts, but that the school have been given all their SEND funding and you have to push them directly to get it. She says that there's little need for the official diagnosis to be rushed through as a result, as her report will be enough evidence to allow the school to channel funds.

Are there any good books for girls with ASD?
Any advice on where to go from here, especially what to ask of secondary schools.

Thanks!

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malmontar · 22/09/2018 07:07

I would wait for all the documents you get and try for the ehcp. It doesn’t matter if it’s hard or not, you can always try and you never know. You have a good case as she is older and will need more support because her diagnosis came so late. Egerton Rothesay is an amazing School for kids like this because it’s quiet mainstream but she would need an ehcp. I don’t really understand why the ed psych would tell you that tbh.

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Marshmallow09er · 22/09/2018 08:56

Was it an EP employed by the LA? In which case they sometimes have targets to meet to reduce the amount of EHCPs. Very unethical.

So frequently their advice would be not to apply for an EHCP or to not include recommendations on type of appropriate school.
(Yes - hashtag not all EPs - but unfortunately this did happen to us - and DS is now in a SS with an EHCP).

Absolutely agree with PP - apply anyway. Expect the request to be declined to start, but something like 85% of refusal to assess decisions are overturned at appeal.

Lots of useful info on ipsea. Read around the law as much as you can to know what your legal rights are (it's not as scary as it sounds).

www.ipsea.org.uk/Pages/Category/education-health-and-care-plans

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Marshmallow09er · 22/09/2018 08:59

Also - did the EP's report contain any suggestions on reasonable adjustments for your DD? It's right the school can start implementing those without a plan - and you can also use them as basis for discussion for prospective secondaries.

If there has been no report or recommendations then that's very poor and you should chase it up; being told you have to wait until October doesn't sound acceptable to me.

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malmontar · 22/09/2018 09:24

I agree with the above. We had to go through tribunal for every part of our ehcp including request to access. Saying you live in a difficult lea doesn’t make it ok for your dd to not get the help she needs. We needed up getting a private ep for ours as the lea one was a disgrace- she highlighted that our DD was able to draw to a very high level so she was ok. Completely ignored that she’s working at least 2 years below her age everywhere else. They are told to highlight positives.

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Marshmallow09er · 22/09/2018 11:10

Altho if the Ed Pysch is diagnosing your DD then that suggests it is a private one (I don't think a LA Ed Pysch would ever diagnose - might be wrong but that wouldn't be their remit).

In which case hopefully you will get a thorough report - but I still think her advice is incorrect.

It doesn't matter if the LA don't want to assess / give out EHCP, if your DD meets the threshold identified by law for a plan then they have to provide one, and their refusal would never stand up at Tribunal.

It might be possible for school to support your DD without a plan - lots of SEN children are - but equally if you feel your DD needs more than what school can offer don't be put off applying for one.

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Marshmallow09er · 22/09/2018 11:12

Books / websites:

Girl with the curly hair
Purple Ella

This Newsround special:
www.bbc.co.uk/newsround/15655232

For you :
the Neurotribes book
The writings of Sarah Hendrickx

Sure there's more I can't think of right now!

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amunt · 22/09/2018 11:59

Not helpful advice from the EP about EHCP. Have you been on the Facebook page EHCP in Herts - great resource.

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cakesandtea · 23/09/2018 00:21

To add to what was already said, all these delays in providing the right support tend to snowball into more and bigger problems, they can cause serious MH problems for example, especially at transfer to secondary. So there is urgency, I would argue, to get your DD sorted before the transfer. So there is absolutely good sense to get the dx and proper needs assessment.

Have you been in touch with SENDIAS (parent partnership)? They are funded by the LA, but usually can help to understand where you are in the SEN process and what are the procedures and provisions you can expect in secondary in your LA. They might clarify who is the EHCP gatekeeper in your LA, it might be CAMHS or the Paediatrician, so you might need a referral for an 'official' diagnosis. They might also explain what type of provisions are and are not available at school i.e. require an EHCP.. If they are good they could help navigate the SEN code of practice and the law .

I would advise if you haven't already done so, to get your own Code of Practice and make your own sense of the 'graduated' approach and criteria to progress from one phase to another and towards the statutory assessment, i.e, what is inadequate progress.

You might also want to get in touch with IPSEA, SOS!SEN and the National Autistic Society educational support helpline.

I suppose your DD was assessed by an EP because there are problems that the school cannot address. So in the graduated approach process your DD might be on the phase right before the statutory assessment, when they involve professionals. The whole point is that the EP should identify the barriers and recommend provisions which were not tried before. If EP's recommendations can be implemented within resources available to the school, they will need to implement them and monitor the results. If the progress will be inadequate at the next review with Senco, you might ask for a statutory assessment. It is the way to identify all the various needs. The assessment might be the fastest and the only practicable way to understand your DD's SEN. The outcome might be that she does not need an EHCP, but it would be based on comprehensive understanding of her needs. Has the EP recommended an assessment by Speech Therapist and /or Occupational Therapist? It is not unusual for DC with ASD to have needs in those areas. Sensory needs are now part of diagnostic criteria, so the EP and the school might have observed something that requires an OT assessment.

Getting the EHCP is not an end in itself, it all depends on your DD needs. What is really important in my experience is to have a full understanding of the needs and have all the provisions in place by the time of transfer to secondary school.

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Pheasantplucker2 · 23/09/2018 11:57

Thanks all.

We've had 2 years of hell with the school - bullying on a class level, constant misunderstandings with friends leading to social isolation and anxiety on a massive level.

We looked at changing schools (one private option and one state option) at the end of last term - she went for a day at each and decided she wouldn't cope with the change. She came out white faced and shaking, they called us early at the state school as she really wasn't coping. In retrospect this is her meltdown point.

The head suggested she might be on the spectrum and arranged for an LA ed psych to assess her, which happened last week. Although not an official diagnosis - and round here it can take up to 2 years apparently with NHS waiting lists, the EP was pretty clear that it would just be a rubber stamp.

We're waiting for her report, which she has promised to send through this week. She spent 2 hours on the phone with us last week though, talking through all the options. She seemed pretty switched on and supportive, but I'm not clear on the role of the EHCP yet and how it would help her.

The EP was clear that there were things that could be put in place which would help her in advance of secondary school, and that she would be recommending them in her report. Her reason for not worrying about an EHCP too much was that in Herts the schools have already been given additional SEND funding - she said they don't like you to know this, but you don't have to wait for an EHCP to force them to make "adequate provision" to support her learning, and gave me an act to quote to them if it was problematic.

My DD has a residential week this week with school, and I'm not sure whether she will cope. To be fair to the school, they have reacted quickly and supportively to my insisting that they put additional provisions in place to keep her supported and have listened and taken note on all the meltdown triggers. She has ways to communicate that she's not coping and my parents have very kindly agreed to "holiday" there so if she's struggling she can see them or go away with them.

I'm going to read and digest all your incredibly helpful advice once she's gone and I may well be back to ask more questions. I had looked at Egerton Rothesay as a possibility but we couldn't fund it ourselves, and would need the LA to do this, which clearly they won't without an EHCP. As time isn't on our side we need to get a move on with this.

The secondary school I was thinking she would go to is our nearest school, and is supposed to be excellent at addressing the needs of the individual. I spoke briefly to the SENCO at the open day and she's happy for me to go in and meet them in advance of me making a decision.

I suppose what I'm trying to get my head round (and I hope I don't cause offence to anyone with my clumsy terminology) is that I have been working along the lines of DD being NT with a few anxiety and social issues for a long time. To be told that it isn't that and that she will need additional support to cope in a mainstream setting - well, to be honest, it's a bit of a head f*ck for me. She's always been academically bright and was seemingly socially confident until the end of year 3 (which is when I understand a lot of girls start with issues) and she has been brilliant at masking her difficulties, so for the last 2 years I've thought she's just been in a very difficult class with a couple of known bullies who have targeted her, and that's been the issue.

I've been wishing the time away until secondary school, as so many people have told me tales of their shy children blossoming when they escaped the very narrow social confines of a small primary school. I'm now realising that, for her, this is not going to work without a lot of support.

Thanks for the book recommendations - I'll get them and have a look.

Thanks lovelies - I will be back....

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