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Here are some suggested organisations that offer expert advice on special needs.

Recent diagnosis and accessing support nightmares
7

Dotdotdot19 · 05/05/2022 10:15

My DD is 3 and recently received a diagnosis for social communication disorder with a view to a formal asd diagnosis once she is older. As an aside she also had severe glue ear for an unknown length of time due to the pandemic and not being able to access the ENT department thanks to some horrific gatekeeping of appointments by my GP surgery so I might be extra touchy on the subject of waiting lists.

I am currently in full battle mum mode and have requested referrals to OT, Portage and am chasing up her EHCP but I am really struggling with the complete lack of anything other then complete disinterest from the services. The only support group in our area that works for us (we both work full time) has recently shut down and the other one that might be a possibility has a waiting list of 18 months.

I don't really know what to do to move forwards. I am trying to teach her Makaton which is not working yet, I have spent hours reading and reading both books and websites and still have no bloody clue what to do! And nobody seems to be able to help me beyond saying how stretched all the services are at the moment. Her nursery are trying their hardest but can't even begin to factor in specialised one to one time until the funding is there which can only come from the pissing EHCP which is 'delayed due to lack of educational psychologists' but could be sped up by a video consultation. She won't engage with a video call so we continue to wait.

I'm not entirely sure what the point of this is, maybe to check that I haven't missed anything out to chase/get her on the waiting list for or maybe just to have a moan of how utterly crap it feels when you ask for help but get batted off to other services which either don't have space or give a massively long time frame to wait for even the most basic assessment! My friends and family are currently either ignoring the diagnosis or listing bloody celebrities as a well intentioned but really irritating way of trying to give me hope.

She is such a happy little girl and I am determined to get her everything she deserves so that she can thrive but I genuinely feel like i am smacking my head against a brick wall!

It's shit isn't it? Please tell me it gets better.

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AReallyUsefulEngine · 05/05/2022 11:43

EHCNAs are governed by statutory timescales. If the LA are not sticking to these write to the Director of Children’s Services threatening Judicial Review. If the LA EP cannot assess within the timescales they must commission an independent assessment.

The nursery can apply for early years inclusion funding if they need more funding to provide additional support while waiting for the EHCP.

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Dotdotdot19 · 05/05/2022 11:47

Where would I find details about the timescales please? And the other funding?

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AReallyUsefulEngine · 05/05/2022 11:50

IPSEA fact sheet about timescales here.


Early years inclusion funding is mentioned here on the gov.uk website. If you google your LA and early years inclusion funding there should be more information.

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Dotdotdot19 · 05/05/2022 12:30

Thank you! I'll look in those and resume my rattling of the LA!

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Needanewadventure2021 · 05/05/2022 22:07

Push for the EHCP. I was totally under the impression that support was in place from diagnosis. I have since learnt from my new employer that this isn't always the case. Only when the care plan is in place required support is given.

I'm pushing more now than ever since finding this out

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AReallyUsefulEngine · 05/05/2022 22:34

Even without an EHCP schools have a statutory duty to make their best endeavours to meet a child’s additional needs regardless of whether they have a diagnosis or not. What an EHCP does is give access to support not otherwise typically available or in excess of what is normally given and, if written correctly, gives enforceable rights. But schools absolutely should be supporting pupils’ with SEN without an EHCP.

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AReallyUsefulEngine · 05/05/2022 22:34

Although support in schools is based on needs rather than diagnosis.

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