Help needed, MNs of school age children with DS!

[Dingle]

AS some of you know Amelia was refused for assessment by the LEA and is about to start school with no support in the classroom, and only 20 minutes 3 times a week with her LSA outside the classroom.

I am thinking of trying to produce a document of evidence showing what support other children with DS are getting, both locally and in other areas. 25 hours seems to be pretty standard from what I have heard so far.

Is anyone willing to contribute towards this. I know their argument will be that every child is an individual but IMO the contrast between what the majority of children with DS are getting to not even being assessed to determine the needs...is just far too extreme.

I was thinking along the lines of name, address(if possible), LEA and a brief outline of how many hours support and brief particulars of any specific therapy within the statement.

Please advice and help if you can. I am treasure for Downs Syndrome Medway and I am hoping that I can widen this information with local input, BUT I know of very few children already in school- most of the group have toddlers.

amny children with DS are in SLD schools- I know it makes it harder to compare but I think you should mention that- you may be able to find fiugures for the number of children with DS in SLD. For a comparison when ds1 (now in SLD) was in mainstream he received full time 1:1. Not sure if you could work that into your argument.

I really feel for you Dingle, I think your LEA are behaving disgustingly.

Personally I only know a couple of children with DS who are older than Amelia. One is just going into Y1 with a 25 hour statement in place but still not coping with lunchtime and or full days.
Another I lost regular contact with a while ago, started MS school, but not sure with what level of support and only managed a couple of years at the most, as far as I know is now in SN school.

I know of a few others through NHS therapy groups, but because Amealia has had no NHS therapy since last Auumn, I am not sure of their situation. We are having a Kentwide meeting later this month and I am hoping for some more hard evidence.

Maybe people will be more willing to share their info if you present the data anonymously but have that info yourself so no-one can say you are making it up. What about any DS EGroups, support groups or the DSA?

Dingle in dd's class there are two children with DS (as jimjams says this is SLD) so how can they justify so little input in a mainstream setting?

The only other two i know of (one loosely) has very little imput and is struggling terrible and the other one goes to a private school where mum and dad pay for the extra support

Ds1 has no statement but got a heck of a lot more help than that in Reception!

Good luck with finding the info you need. xx

have you thought about contacting DSA and seeing if they have info or support services they can provide?!?! probably a stupid question but just a thought.

Eidsvold- I contacted them when I put in the request for assesment. I need to ring them again to ask for further advice but TBH, trying to have any conversation on the phone while I have both the children around isn't worth the effort. I am hoping when DS is back at school at the end of the week I can sit Amelia down in front of one of her fav DVDs and get 5 minutes to myself!

Hi Dingle - right... so why was she refused? What reason did they give?Have you appealed yet?
Can IPSEA help?

We got Lottie statemented just before her 3rd birthdaya nd we were refused at first but I appealed and won.
She got 10 hours a week and as far as they were concerned she was at school for 15 hours, actually I put her in full day in the end but that was an agreement with the teachers there and they didn't charge me or anything, anyway...

So at the review for wheh she goes into primary we updated it and she now gets 25 hours a week. Teacher is in school full time so will be there for Lottie all day every day.

Am happy to give you any info you want, just email me.

They are saying that the school feel that she does not need a statement at this moment in time and that they are meeting her needs in nursery and expect to meet them in Reception. They also say that the school have envolved the appropriate help to ensure her needs are met. She has not seen either SALT or OT for nearly a year and her physio program is from 18months ago when she was wearing the AFOs. The only therapy/input she has had recentl;y has been what we have paid for privately (Symbol and BIBIC)
As far as I know she hasn't even been seen by an EP, only talked about in an In school review meeting!

Have contacted IPSEA and have just had more paperwork today, I have to put in by appeal before 27th of this month.

DownsED cannot help (not enough staff) but I do still need to contact DSA again. (I spoke to Bob Black back in June?july when I put in the request to the LEA)

Any advice/feedback would be much appreciated.

Right - what areas do you think she needs help in? Where do you think she's going to need the additional help?
I'll pull my statement out and we can go over key areas together if you like.?????

Lets pull out key phases like 'making sure she can access the curriculum' and things like that.

There are children with ds in my sons unit. I also know three children with ds in m/s two have statements for around 20/25 hours, the other has had a fight to get support for similar reasons to you, but I know she won a good level of support.

I am in another part of Kent.