Talk to me about EHCPs please!

[SinkGirl]

I made applications recently for both my twins (who are 3 next month). Had letters this morning confirming they are proceeding with the assessments and setting the final meeting for first week in November.

My question is, do I need to seek support from SENDIASS? Would it be unwise not to, as I have no experience of this process? If not, what should I read?

To summarise
DT1:
Autism diagnosis, very bright in some areas but completely non verbal, lots of stimming, climbing, understands very few words (as far as we can tell), just starting to use PECS for a few things sporadically. No social interaction with peers, limited interest in adults.

DT2:
Much more complicated- ASD plus a visual impairment (which we think doesn’t affect him too much but unsure), plus some brain damage and either endocrine or metabolic or genetic issues (still having tests) relating to blood sugar levels and other things. More delayed, also non verbal, very sensory seeking (dangerous mouthing etc). At the moment he’s in the 0-2 room at nursery as the toddler room would be too dangerous, and he can’t stay there forever. Again, very limited socially.

I think I have a clear idea of what they both need - ideally one of two local specialist early years settings specifically relating to ASD. If not, more intensive 1-1 support at nursery plus SALT and OT time and making sure DT2’s medical needs can be monitored. Possibly a VI teacher but at the moment we aren’t sure how bad his vision actually is.

Any thoughts? Clearly I have no bloody idea what I’m doing.

Do you know which specialists are assessing them?

Only provision contained in the reports will be included in the EHCP. So you should have information from the school/setting they are in, information from yourself and from and Educational psychologist and anyone else you reasonably request. So if you think they need SALT and OT as part of the EHCP you need to make sure reports from both of these specialists are included in the assessments.

Once you have the reports you need to read them through and make sure you agree and they don't need to be changed then the information will be included in the EHCP (hopefully!)

In terms of contacting SENDIASS, unless you want to request assessments from the LA that you are not getting there isn't much to be done until the reports come in.

I don’t know anything at the moment. They’re both under SALT at present, although not currently under OT as we were told there’s not much they can do for them at present. OT were involved in their assessments when they were diagnosed (December and February).

SALT has been into nursery to see them both recently so I’m not sure if they’ll need to see them again. Their paediatricians have also seen them recently.

It seems they’ll need to see an educational psychologist and a social worker according to info on the council website.

I would contact your LA key worker (there should be a number on the letter you received) and check who will be assessing each child. Then follow up with a confirmation email, so that you have a written record. We were told who was assessing with our agreement to asses letter.

If you look at the SEN Regualtions 2015, Part 2, 6 it gives a detailed list of exactly what information the LA legally needs to obtain during the EHCP. It's a good guide for checking the LA are including all the right people in the assessment.

I think if OT have assessed previously and have said they can't do anything, you are unlikely to get another assessment unless a lot has changed since the last assessment or the report is old/out of date. I guess it depends if they have be discharged from the service or not.

OT is a bit of a sore spot for me because I don’t really believe they can’t do anything at all - I know other kids who are non verbal and have no understanding of words who see them. We have been given a list of available chew toys 🙄 Awesome, thanks for that. Very useful when my son chucks anything he’s supposed to chew and instead eats furniture, window ledges, stones and tarmac. Oh and once, half a dried dog poo.

I think as they are progressing there is maybe more that could be done for them. So I think a new assessment would be useful since it has been six months, and the one who had few sensory issues at assessment is now showing more (lots of stimming with his hands and covering his ears frequently). I can only ask, i suppose. SALT is the main thing really.

You need to push for a VI specialist's report. It sounds like OT may well be necessary for both sensory and motor needs.

The problem is he can’t participate in eye tests at all so they can’t make any assessments. He obviously has vision and can see but we don’t really know what his vision is like - I think he has issues with depth perception at least. He has optic nerve hypoplasia (small optic nerves) - some with it have basically normal vision, some are completely blind. He also has strabismus which alternates which they reckon isn’t affecting his vision 🤷‍♀️

Sounds like all the more reason to have a report from a specialist VI teacher on what support he will need for education purposes.

Okay. So I’m going to contact the LA tomorrow and request:
OT assessments for both twins
VI specialist teacher assessment for DT2

Do they have to tell me who they’re seeking reports from, and do I get to see any new ones before this meeting? I’m not expecting any big surprises to be honest - their needs are quite clear / obvious so I’d be surprised if anyone reached any vastly different conclusions than they already have (it was the LA SENCO who said we should be looking at specialist settings ASAP). Still, if there are any surprises it would be good to know about them in advance.

I work in a school for children with severe and profound and complex learning difficulties and we have an ophthalmologist who visits the school regularly to assess/monitor some of our pupils. Many are non verbal and have limited understanding but she manages to complete some form of assessment so it can be done.

They dilate his pupils and look in his eyes (which he detests), so they can see his optic nerves and check for refraction errors but despite their best efforts it’s very difficult to even get him to do the usual look at the light, look at the toy type tests or the ones with pictures.

Sorry, I find it really difficult to talk about this because I feel like shit that I can’t even tell how much he can see. He can feed himself etc (well, with his fingers) and likes looking at books, and loves the TV - he can definitely see, but I have no idea what he sees, how much detail, etc etc. He used to be brilliant with things like shape sorters before he regressed and now he can’t line things up but I don’t know if that’s vision or something else.