Obtaining a statement for ABA- advise please

[hippygem]

Hello,
This is my first post on Mumsnet and I'm really hoping you can give me some advice.
My little boy was diagnosed with autism & developmental delay in June when he was 23 months.
We've managed to obtain 2yr old funding so he can start at our village preschool for 2 mornings a week in September. We had a great meeting with the Ed Psych, area SENco and preschool SENco, and they've drawn up a 'preschool plan' that means he'll have a 1:1 support. They've been very accommodating so far.

However, we've recently decided that we want to start an ABA programme as well as preschool. We've been in touch with PEACH who have told us to get River statemented in order to get the funding, and that we will probably end up at Tribunal but it's definitely possible. They've said we need to write to our LA and ask for an assessment to start with, and that it's best not to mention ABA.
I'm not scared of fighting as we had to fight to get a diagnosis so early, but there are a few things I'm worried about:

1. If we're not to mention ABA, what do I state as my reasons for wanting a statement? They've been really accommodating to us with the early preschool placement and 1:1 support, so I can't put that. He's only seen SALT twice in 5 months & OT three times, so maybe I should just say that I feel he needs more regular therapy?

1. The ed psych is really lovely but she's already said my area "pride themselves" in having a very low statementing rate. Is it really worth the battle???

Thank you :)

I'm in similar situation ragarding preschool. I'm not expierienced with statement, as I'm going to apply soon for the first time. I'm interested what does Peach say you can get an aba trained shadow 1-1? Ds is having mixed therapy at the moment (floor time+play therapy+aba fusion:) don't really know how could we train anybody for that... I'm wary of the long fight ahead for us and not at all sure I can manage to get aba incorporated in the statement, if it's worth the battle ( i mean impact on the whole family+ finances...so know what you mean. I want statement before promary school mainly to be able to choose school for ds, as no way he is going to our local school- but that's probably mot a valid reason to use ;)

Caudwell children's charity do £2k worth of funding (enough for someone to come and show YOU what to do) for ABA. It's not enough for a full-time programme but sounds to me like an excellent way to:-

1/ Get parents started enough to establish whether it is the most effective teaching method in preparation for a full time programme.

2/ Aquire the evidence that it works that you'll need for tribunal without remortaging the house to do so as they provide an independent bod to over see the programme.

3/ Support a child in mainstream who perhaps doesn't need a full time programme but rather a "boost" to the existing support available from the state. Or perhaps to help a school/TA that want to help but don't quite know how. (this is the route I'm going down with my 8 year old, as he's SO close now to really doing well in so many areas).

Well worth looking into for you methinks.

You say that two mornings per week term time only in mainstream with a non specialist is not enough / has no evidence base to support it. Can also say SALT and OT is insufficient.
You don't have to call it ABA but I think you probably have to say you want specialist early intervention.
You can also say you want a programme that provides support at home / generalises skills across settings.
There are ASD guidelines from 2002 which recommended 15 hours for pre schoolers.
Also US evidence - National standards Project which recommend 25 hours per week year round.
Expect the statutory assessment to be refused. You then appeal - often the council back down on this and do the assessment as you only have to show your child 'probably' needs an assessment. You then either get or don't get a statement. If you don't you have to appeal to show a statement is needed. Once you have a statement you then probably have to appeal to get ABA written into it. So most families face 2-3 appeals and can expect at least one to go all the way to tribunal.
you will have evidence within 6-9 months if ABA works better than mainstream provision.
We applied for a statement at 2.5 and it took until 3.11 to get one with ABA on it (via one tribunal)

Chances are the 1:1 support will have very little autism training or guidance, especially with 2 year olds. I have seen many many clueless, but well intentioned 1:1 staff, trailing after children with autism unable to engage them in anything when I have looked round schools and nurseries.

It can be worth the effort my son has 35 hours a week of ABA 48 weeks a year and ABA staff go into school with him (he goes to mainstream part time and does home ABA the rest). He would not have been able to go to his local school without ABA support, school would be a disaster without it. He has made so much progress. Before we won ABA he had full-time 1:1 in nursery (15 hours a week) + SALT + outreach for 18 months and learnt absolutely nothing. Not a single word or skill, when in home ABA he learnt new stuff every week.

It cost us about £12,000 in private ABA, advocate and expert fees to get through tribunal (we did most tutoring ourselves) but so far (and its a struggle to keep ABA once you win it!) we've had nearly £100,000 of ABA funded.

How many hours are PEACH suggesting you do? We did not go with PEACH as they wanted us to do 40 hours and we could only manage 15-20.

Thank you so much for all your help!

babiki, the ABA therapy would be a separate thing to the preschool hours, but I'd be hoping to show the 1:1 show techniques.

bochead, I've just this minute filled out a Cauldwell application form! Although didn't know how much they'd fund or how long it would last.

AgnesDiPesto, that's incredibly helpful. You're right, the 1:1 has no experience of autism. In fact, nobody at the preschool has any experience of autism including the senco, River will be the first autistic child to go there (it's a small village nursery.) I'm going to be there from September until Xmas then will start to leave him there, and they're sort of expecting me to show them what to do. I'm concerned that they'll manage to keep him happy & safe but he won't actually learn anything, which is why I want ABA.

Peach suggest as standard 30-40 hours, but said they'd give an exact figure after an assessment. I don't really know where else to look.

We use Autism Partnership (Leeds, London, Cheshire offices)

You can do a thread asking for recommendations where you live. there is a yahoo ABA group which is worth a look.

I think my DS would have struggled with 40 hours at 2.
We were able to show good progress compared to nursery provision on 15-20 hours per week with us trained as tutors. 30 hours would have been better but only if you can really afford it. Don't feel obligated to do it.

You need to be tactical about nursery. If you train them in ABA you risk the LA claiming all your hard work as their own. To win you need to show (a) ABA will work and (b) the LA provision does not work. In practice this means you have to stand back and let nursery work or fail (usually fail) on its own merits.

If you bring ABA techniques into nursery the LA may make the nursery's life very difficult if they are anti ABA. We were lucky the nursery had tried LA help for 6 months before we started ABA and felt it was lousy and then when we started ABA saw immediate and big changes in DS. That did not stop the LA bullying the nursery to change their views that ABA was good for DS - the LA also got SALT to change view that ABA was working to saying it was awful.

The law says parents are not required to meet their child's SEN from their own resources. If you are having to put in time and training to nursery that is evidence the LA provision is not good enough. Its not your job to train nursery that is autism outreach's job.

I know it is hard to stand back and let it fail, but it can be better to do that for 6 months to get the evidence than to lose an appeal and be stuck with terrible provision for 18-24 months until you can get back to tribunal. You will need evidence your child has tried the standard provision and it has not worked.

Thank you. I managed to find an advert online for an ABA tutor in my town (I live in Somerset), from a couple of years ago. I've got in touch and whilst she no longer does ABA she's passing my details onto her old consultant.

I don't think River could do 40 hours either, I think 30 would probably be his limit.
This is our main problem- we have literally no money of our own to put towards it. We will be relying on a grant from Cauldwell & LA funding in his statement. So unfair that vital early intervention just isn't provided unless you have money.

I hadn't thought about how teaching preschool ABA methods could actually be detrimental to getting the statement. They're not actually getting any training- the OT mentioned going to the preschool on their inset day & spending an hour with all the staff to teach them about River's sensory issues, and asked me to find out date from the preschool. Which I did, & relayed it to the OT- but as far as I'm aware they still haven't arranged it.
So- do I liaise between the OT & preschool and arrange the training session for them, thus making it easier for River when he starts in September, OR do I leave them to do their job (or not do their job, as it stands) so they won't know how to deal with his sensory issues and therefore more likely to get us a statement with ABA in the end?

I hate the fact that we have to make these decisions.

I just can't work out if it's something I should be fighting for, or if I should just accept what's given to us and work as hard as I can at home with him.

Hippygem I think it's better you leave it up to preschool and therefore they can't claim later he was making sufficient progress and will need similar support in reception... Sounds awful I know;( I cannot realistically imagine how to do so many hours a week of ABA and how to pay for it, have you got it planned already ( I mean the hours in a week). With two other kids I just don't know how people do it...

we did an initial workshop which was about £2000. Then we paid £400 a month for 8 hours (2 hours per week) supervision and we did all the teaching hours ourselves for 6 months. Then we got a tutor for 6 hours a week for the next 6 months until we got to tribunal as we were getting a bit burnt out lazy and got caught up in tribunal stuff. We got one EP report and took EP and ABA consultant to tribunal, no SALT report. We used DLA, my parents gave us £200 a month and we added a bit to the mortgage for the reports.

It has to work for you as a family. For us the supervision was crucial to keep us on track and also as DS whizzed through the early programmes.

You will see results from 15-20 hours and just getting trained yourself and parenting differently helps. Some people manage to get volunteers from family, friends or university psychology students who want experience.

Its not a hard decision for me looking back but when we were where you are we spent 6 months 'shall we shan't we' and tried mainstream and also tried to get DS into the special school nursery because we really did not have the money either. But when mainstream was not working and we got refused a place at SS we felt we had no choice but to do ABA. The LA wanted him to fail in mainstream for 2-3 more years before they would even consider putting him anywhere else. We couldn't let that happen.

What helped us was we made a decision to do ABA for 3 months and then review / reassess. We made sure we were with a company who did not insist on any tie-in and we could walk away. After 3 weeks there was no question we were going to keep going as the change was immediate and obvious even to the staff and nursery.

My DS is mod-severe autism but very clever. He is very passive and zero motivation to learn for himself. Some children are easier to reach and more motivated.

Talk to your families about what you are thinking, they may want to help.

Not sure which Welsh university it is that does ABA course - is it Swansea? There may be more ABA consultants over that way.

Agnes thank tou and sorry for hijack. You see we ate two foreigners living in UK so really no help from anybody possible. I did get a great therapist for ds - she does 3 hours one day a week hopefully will move on to one more day ( it's a mixture of floor time/aba/play therapy) and it's working great, but I do feel 'guilty' sometimes - maybe full on aba would push ds even more... Not sure.. It's great what you managed for your ds, well done!!! We don't own a house and tbh at the moment we are in such a shit financial situation that training is just not possible. On the other hand, ds is not even confirmed asd ( will have ados soon, Nhs therapist think he is on the spectrum, private specialist thinks he is not..) and not sure if aba would be incorporated into statement in the case of gdd... It's all doing my head in, well you know what it's like :)

BANGOR UNI DOES ABA