Does anyone here fund 1:1 support in schools themselves?

[Siphonophore]

Is it even possible?

Our youngest starts full time school in September, he has a rare neurological disorder(s) thought to be an usual type of childhood migraine. He has episodes several (3-5?) times a week lasting several hours in which he suffers from significant nystagmus and ataxia, and sometimes vertigo and vomiting. Imagine a very drunk preschooler and you get the jist.

He receives middle rate DLA and his preschool receive funding from the LEA to provide 1:1 care for his full 15 hours a week on safety grounds. He copes very well at preschool, the extra help makes the world of difference- he is very happy, and doing great.

Ultimately, when he is affected he is a danger to himself and those around him due to his compromised vision, lack of balance and disorientation. A close eye needs to be kept on him too to try and prevent his symptoms from spiralling to the point that he is being sick and struggles to stand or communicate (not nice :( )

General consensus is that he is not eligible for a statement, because he is not falling behind in enough areas of the curriculum, and because he is not affected by his condition 'all the time'.

At a recent meeting the SENCo of his proposed school advised that unless we get a statement, he will get zero extra support from the school, because there is no money for it. ZERO.

We are in the process of applying for statutory assessment, and have plenty of support from specialist SN LEA caseworkers, but it still looks as though we are highly unlikely to be given a statement.

The idea of him running round school without proper supervision and guidance when he is unwell scares the absolute S**T out of me. I have very real concerns for his safety, and the safety of other children around him too.

Strange as it sounds I couldn't give a toss about his progress against the curriculum- we can support him with that if he missed school through illness etc- we just want him to be safe and happy at school when he is too young to articulate and manage his problems himself :(

My husband and I have discussed the possiblity of funding the support he needs ourselves, if push comes to shove.

Would love to hear from anyone who has been in a similar situation and done the same? Any advice from anyone who has been in a similar position also greatly appreciated!

If you look at the current Code of Practice it is clear that he would be able to access a SSEN under medical grounds and Health and Safety Grounds. He clearly needs full time support from someone who can do the care needs and who needs be be trained by the medical team how to manage and support him.
Under the Equality Act the LA have an anticipatory duty to meet his needs. Their stated position is rubbish.
To say that he only needs support for 15 hours is rubbish. Its like saying you are only ASD for half the time in school.
Ignore any reference to full time needs or any other such tosh.
Stir up the medical team and see what they say.
The LA are trying it on.
Under no circumstances should you pay for the support. It is not legal to do so under these circumstances. He is entering education and so you will be stuck with any support that you offer until he is 19.
PM me if you need additional advice.

My child didnt get a statement until Y1 or Y2 ,I cant remember exactly,but full time one to one support was provided by the council since before Reception due to the same problems . The council funded 25 hours and the school the rest . A safety helmet may help too and a heatherfield chair for his table . If your child injures himself because the intermittent ataxia or dizzeness etc they are legaly responsable so they will either get funding somehow or call you to pick him up but as it is quite frequent and I imagine he can become unsteady suddenly at anytime etc without warning they are going to have to seek funding under medical needs and a statement.

The school must fund the first £6000 of support (about 12-15 hours). The LA must top up above that. These are national rules now.
Write back to proposed school and confirm their advice that your child will get zero support without a statement. Ask them to write back to you confirming this is accurate (they won't!)
You learn to keep a paper trail and challenge the garbage thrown at you.
You get anything short of what you need, you appeal.
But I would probably suggest looking at other schools. If this is their attitude now it does not bode well for the future.

Not a good idea. I know someone who tops-up the LSA's salary in a state ms school (because she wanted someone with particular qualification). However, school often assigns the LSA to another class.

"My husband and I have discussed the possiblity of funding the support he needs ourselves, if push comes to shove"

Do not tell the LEA that!.

LEA must not dodge their statutory responsibility here towards your child. How far are you along the statement process i.e when did your letter to the LEA go in?.

And with regards to the above, at what costs both financial and emotional to yourselves?.

I havent read all the replies.

Our child is in early years so might be different to school. I know some families send an ABA tutor and fund it themselves/top up. We funded the 1:1 for 60% hours for 6 months and then ramped it to 66% time with setting paying 42% and we covering the rest.

Thank you SO much for all your replies, they have given me a real boost! So easy to feel lost and confused with such conflicting information being banded about by people you should be able to trust! We can ill afford to pay for the extra care he needs but we have been panicking a bit and exploring every option.

Excellent idea about asking the school to confirm in writing that they will fund zero- I agree, of course they won't.

Our letter to the LEA is currently being looked at by our caseworkers from the Specialist Teaching Service, once they add their penny's worth it'll be sent in.

hannover4me I would love to hear about your child's experiences settling into school and coping with similar symptoms- would you mind if I pm'ed you?

"Our letter to the LEA is currently being looked at by our caseworkers from the Specialist Teaching Service, once they add their penny's worth it'll be sent in".

Delaying it like this is not a good idea as it can also take around 6 months upwards for such a document to be set up. It therefore needs to be sent off asap. If the LEA did agree to assess they should at that time ask the Specialist teaching service for their own report.

If you want further advice on how the initial letter should be drafted I would have a look at IPSEA's website www.ipsea.org.uk

It's not really delaying it, I emailed it to said caseworkers yesterday and they getting back to me this afternoon about it so we can get it off ASAP. From what I was advised it is important to get the first letter right to even be considered for assessment so I value their professional input.

Will check out the IPSEA website, thank you!

I tried to do this too (10 years back so things may have changed) when my ds (SLD ASD) started school unsupported and was told it would not be allowed because of an insurance issue!!
However I do think safety is taken seriously, and this is an issue of safety not falling behind. A statement is the best way forwards (health and safety neds to be met to allow learning). If there are delays then approach the school nurse and school health service (ours was excellent and was listened to and effective but some have less bite). I have no knowledge of the health side personally but know some children have support for medical needs.
I do understand how daunting it is to leave a young child with high needs to the sink or swim in the classroom unsupported.

"It's not really delaying it, I emailed it to said caseworkers yesterday and they getting back to me this afternoon about it so we can get it off ASAP. From what I was advised it is important to get the first letter right to even be considered for assessment so I value their professional input"

Even then, the LEA could still reject your request. Hopefully they will agree to assess but if they do not I would suggest you read IPSEA's refusal to assess pack via their website.

Good luck with it and keep posting here too.

Sink or swim sums it up magso! I hope everything worked out for your son!

Yes, they could still reject it AttilaTheMeerkat, fingers crossed they don't. Finding the IPSEA website really useful reading, thanks for the tip, much appreciated. Will fight his case to the end so all useful resources welcomed!