Please Help with Proposed Statement.

[LindiRioni]

Dear All,

I just received the proposed statement for my little boy who is 4.5 years old, he has Autism + Global Development delay. So I would like to ask you all some questions please. English is my Second Language so I was not sure about wording in the proposed statement and please excuse my grammar in this post.

1.LEA state on the cover letter that they think the suitable school for September 2014 is ....Mainstream Primary school, Specialist resource base. Is this ASD Unit?? This school has an ASD unit attached to school.

2.I would Like to ask LEA for ABA Home programmes, education otherwise. The consultant recommends ABA to be integrated into mainstream school. I would like to include about 1 hours – 1.5 hours for socialising hours only. I have been doing part time ABA at home for about 8-9 months now and he made so much progress. However, I have done the programme secretly from school and did not tell LEA about it. What do think about this ? I thought that when I go for the first meeting they will question me why I did not tell them about. School notice the progress in him but I told them that I worked at home with him in the afternoon. How do I answer this question please?

3.I am prepare for the first meeting with LEA at the moment. I am planning to give in the ABA report from his consultant and Private speech and language therapy report. Should I give both at the same time or give one at the time ? My aim is to negotiate with LEA for funding and avoid the cost for the Tribunal. In this county there were only family received ABA funding and they have the funding before the Tribunal. I have the consultant letter stating the cost of £23000 ? Is this too much for LEA to pay ? I know that they will not be talking about Funding or money but reality is down to the cost too. The mainstream reception that they offer is very far and children usually travel by Taxi, it will cost about £30 back and for from my house. I have been in to see the school too.

In the statement mentioned SALT and OT, I don’t know how often is this will be but I think someone said to me like SALT will go in to school one for every 2 weeks, is this good Enough for LEA ? Addition to that , NHS professionals are useless and I don’t see the point for my boy having them at all but it better than nothing. Especially OT, She does not really help me with anything. Most of the OT advices were from ABA Consultant and me reading off the book + internet.

4.I am concerning about the question that LEA will have for me at the meeting. I would appreciate any advice from you all about what they might ask or challenge me ?

how would I respond to that please ?

I think the main thing is he will go to reception and he is currently in the mainstream nursery at the moment. All Special units and special need school in here are using TEACCH approach and some Green Span ( Floor time) They might say something like I have not try them yet and how do I know that it would not be best suit him ??

I have done Floor time for while by myself with the help with consultant and it did not help much at all, Little one did make very little progress. There is no data for the programmes or nothing. The only thing was he started to see me as a mother a little bit more. I have done this for more than a year when he was diagnosis at 2 years of age. I just left it because ABA is work so much better.

5.Can you please list any possible questions and Things that will help me to prepare the meeting? What document to bring in, what to ask ?Etc..

Thank you very much in advance for answering these questions and really sorry if this is too long.

TEACHH is not inclusive. ABA is inclusive.

That is your starting approach.

I would suggest you contact IPSEA or Nas education advice line and they can allocate you a caseworker to help you word things.

The proposed statement leaves part 4 blank and is so you can say what you want. So you write back and ask for ABA (education otherwise) including inclusion opportunities with ABA trained support in mainstream. I would put in reports if they support ABA.

The meeting is probably to discuss what placement you want.

You did not need to mention ABA before. The point of assessment is to see what professionals views are, that they are suggesting specialist placement in unit supports you have a similar view of needs.

If your DS is much better at home in ABA than at nursery you may want to offer their EP to come and see that.

They do have to listen to parental preference.

It's helpful the LA have suggested a unit as the cost of that plus a taxi is likely to be about £15-20,000. So not a big difference on cost.

I would ask the LA to cost out their suggested offer eg unit place, 1:1 (if any), SLT, OT etc. then post that info on here as it's often not accurate.

SLT varies. Ours is half termly ( like you it's useless). It might be more in a unit. You should ask how often does SLT and to visit, how many children do they see, how long for etc and try and get clear view of how much time that is.

We find that we don't need SLT and OT as Aba does it better - DS doesn't have many sensory issues it's more behavioural and needing things broken down, which ABA is better at. So we have ABA progs for speech and motor skills which work better than NHS SLT or OT.

We do now have private SLT input funded as our LA is a pathfinder. If yours is you can ask for the provision (or parts of it) as a personal budget and you can then use private ABA and SLT. All this is new and LAs are not enthusiastic but it's a change that's coming and LAs are going to have to get used to parents saying I can put together a better ABA / private SLT package with the same money you plan to spend.

LAs do not want to fund open ended ABA. They are made to think all children must be in school, and school is better (cheaper!). They will often want ABA to transition a child into mainstream and build up to full time school. My DS started 3 half days (7.5 hours) and now goes 6 half days, with rest as home ABA. He is year 2. Been a lot of pressure for him to go FT and fade out ABA. But he still needs split between 1:1, small group and large group and schools don't have facilities for 1:1 space. So we have managed to keep this split. Even if he was in school more he would need to have a room for 1:1 work so our argument is he may as well do this at home where it's quiet etc.

You do have a right to mainstream school and can argue ABA is necessary step for your child to be in mainstream. But be vague about how much time in school as if you say 1-1.5 hours then the LA will be wary of that. I would leave that argument until you see their reaction to ABA. Our statement phrases it that ABA consultant is person who decides how much time is spent in school and when to increase it. That's based on DS skill level improving to point where he benefits from small and large group work as well as social opportunities. He can now learn in groups but couldn't at 4. We also need to do priming in 1:1 etc and then once he's learnt skills in 1:1 we bring them into school. School is a much more challenging environment for him so he learns much faster in 1:1 quiet space than he would in school even with same staff and same teaching!

You should also ask for their data on unit and outcomes from children in unit etc. why they use TEACCH. What evidence they have to support it etc. don't feel you have to do all the justifying. Ask them to prove to you their option is a valid one with good success rates.

Another option would be to use an advocate like Fiona Slomovic (mediation and advocacy). She is excellent and very knowledgeable about ABA and good at negotiating deals. Not very expensive either.

Your ABA consultant should be able to advise you on wording etc too.

Mainstream school will have a cost eg per pupil place is about £4k which will have to be added to costs of your package

£23k is a lot less than our ABA package but we went to tribunal. We would not have got ABA without winning it at tribunal.

£23k is equivalent to the salary of a full-time 1:1 at higher level, when you add on on-costs such as pension, sick, training, agency fees etc. Complex children need the higher level TA. Autism is a complex disability.

SALT and OT cost around £100 per hour of contact for the NHS regardless of what the LA buy it for, so it is still £100 cost to the tax payer. Weekly for both comes in at about £7k on top of the 1:1.

I don't think the LA will question you too much at the meeting, more try and convince you that ABA will turn your child into a non-generalising robort and prevent his social skills from developing and that full-time 1:1 stops independence.

Dear AgnesDiPesto ,

Thank you so much for your information and useful advices. This is very details on everything that I need to know about.

I will find out about the cost and everything else in the meeting and will coe back with more inforation again.

I also have Fiona helping me out for this but I like to prepare myself in advance too. I will take my friend with me to take the note so I have to explain to her some of the Gargon and wording for this matter to her.

To be honest , I think the cost from the consultant is a little bit less. This is base on 35 hours only for 10 monthly visit + Tutor £10 per hours + cost for tutor to attend team meeting and work shop + anual report + Half day visit and resouces £1000 a year = £23962

The consultant recommend to use Cauldwell £2000 to top up sor superviser if needed and I will have to do admin work myself. What else should I will ask for ?

I have the Private SALT report and one of the recommendation is to over see the SALT in ABA programme termly. I mean, she cost about £400 + report. I am not sure to request for that or not ? I must say that Speech is the big part of his statement.

Does anyone received private SALT & OT and ABA at all ?

His NHS SALT and OT is very terrible. For example She was try to get him to use PECS, Shw said my boy is not good and he was on Phase 1 Pecs for 3 months then Phase 2 for 3 months. I knew that he can do PECS at home independently up to phase 4 and travel comunication when we was working on ABA ? I find this and absolutely terrible. Her latest report say he should ove on to Phase 3 but as a ABA we are doing sound and mastered almost every sound and also doing the Vocal Mand. Fro non-verbal and now he said a few clear word within 3-4 weeks of Trying !! Amazing what ABA can do !!

I hear people is also talking about £2000 extra from LA , this is call personal budget. This is a new thing come in to LA in September. Have anyone has Idea about this and Should I bring it up to my LEA ?

Thank you inadvance for everyone answer , I really appreciated.

Dear StarlightMcKingsThree,

This is a very good point that ABA is inclusive.

I must say that I cannot believe that SALT cost £100 per hours !!! This is shocking, I am sorry to say that if my SALT get £100 per hour then I should have taken some of that of her because I am the one that doing more work than her and the amount of work she is doing to m y little one she should cost less than my tutor.

The Private SALT cost me £400 for 6 hours assessment + 10 pages of details report. NHS have done less than 1 hour observation and 1 target + 2 pages of report with lines in between for his statement !!!

I think the good tutor should be pay about £15 per hours ?? The thing is where I live we have not got the ABA tutor at all. I am using ABA student and train the up myself.. so This is why my consultant quote as £10 per hour.

There are tutor nearby county, they would charge about £15 per hour and i have to pay for travelling expense too. so the total cost rooughly £17-£20 per hour.

Am I right regardless what the cost is , Everything should meet and adjust to his needs ?

I found a lot of old and recent thread about this issue (Costing) I mean surely LEA should have regardless what is need for that child and it should not really be the money. Do you think that I should be talking about Money with the, I heard from another mother who win the case (Quite different situation ) she said that we should not be talking about money with them but They never going to say anything about the coast because it is against the law.

Thank you for your answer Star.

Hiya,

Another question please,

I went to see this mainstream school and ASD unit. I talked to Head teacher in there.. She seems nice and said that she will try to work with me. I thought that it would be good as I thought that I can have 1:1 from my side to go in with him. I just realise that if he goes to the unit, he will not have 1:1 support.

In the statement however, mention that little one is needed the 1:1 because his safty, LA just put on there that school will be more vigilant and keep an eye on him??

The question is Head teach told me that in school they use some principles of ABA with Children; This where is my concern start. I think that LA might bring that up. I kind of remember seeing someone answer this question before and using principle of ABA in school. Can you please try to help me argue this point?

thanks