BSDad and oodles, ok here goes, sorry its a long story!
I would like to be able to tell you that it had been a straightforward journey to get ABA funded but it was almost a 2 year process. It is fair to say we have had to drive this all the way in face of much opposition.
No-one will talk to you about ABA because of its cost. That is probably also true of any other independent provision. independent placements are increasingly seen as a last resort and to be gatekeeped for the most severe / challenging children. Most LAs will not offer ABA - if any did offer it freely they would be very foolish as we would all move there! You will have to raise the issue.
Initially when DS regressed at 2.3 we looked at the local MLD special school nursery which had on site SALT etc which we thought was the best option to start with (we could not afford ABA really) - we hoped DS would then move to mainstream at Year 1 or 2 if he did well.
We asked the LA to consider fast tracking him to SS nursery and treat him as 'severe and complex' child rather than the graduated approach. They just tried to put us off the SS in a really quite inappropriate and unethical way. Request for statutory assessment was refused - against the evidence - he had to fail at mainstream first.
We started ABA after the refusal to assess as it was clear we were looking at months of deliberate delay and DS had already lost 6 months since regressing. We did it ourselves part time with an ABA supervisor and no tutors to keep costs down.
The LA decided on day one what they were going to give DS (the cheapest provision they could get away with) and they never budged from that position. There was never any dialogue, much as we tried. We appealed the refusal to assess and the LA backed down rather than go to tribunal - I think they thought if we give them an assessment they will go away.
Two things happened which led to the end result - DS did brilliantly with ABA within days the nursery and we saw dramatic changes esp with his language - and the LA EP did a report which supported intensive early intervention preferably ABA (having seen it) or at the least SS nursery place. He recommended daily specialist teaching and intensive systematic programmes. We were very lucky with the EP, however I am guessing that he had no idea how much ABA costs as our LA had only funded it once before.
However the LA ignored their own EP. The Statement they issued was 100% 1:1 in mainstream nursery (15 hours a week) + SALT and autism outreach visits. None of the reports for statutory assessment recommended mainstream. The LA ignored everyone and just cherry picked the phrases which could be used to support them and ignored the 99% of the evidence that supported us.
We appealed the statement. It took 10 months to get to tribunal (we took the full 2 months to appeal and it then got adjourned due to witness issues). By the time we got to tribunal we had done nearly a year of the mainstream ASD provision in nursery and of ABA at home. We were able to compare the two and show good progress at home and poor / no progress at nursery. DS gained 20 IQ points in the first 6 months of a very part time ABA programme delivered by us. We also worked on different targets at home than were in his nursery IEPs
You would have thought with their own EP against them the LA would have pulled out all the stops and SALT and outreach would have been in nursery regularly (we had been promised weekly visits of an hour of outreach) proving it was appropriate and enough. In fact they turned up about 4 times in the year, did no direct work with DS at all just gave generic 'advice and support', set up one programme (group singing in a circle which frankly every nursery does anyway and which they let DS stim his way through) and did not demonstrate anything to nursery staff ever - the nursery even wrote and asked for more support and they did not come. We also challenged outreach about why they were not coming weekly and had not set up any programmes and were fobbed off. SALT also did no direct work.
We could not understand how were they going to defend themselves at tribunal when the provision was so poor. Then their response to our appeal against the statement arrived - a lever arch file full of lies about how we were obsessed with ABA and so had obstructed the outreach staff from going in and using different approaches, how the nursery were terrified of us and would not go against us so were only using ABA and not outreach, how we were so rude to their staff they had to withdraw them - so basically the reason the provision had been so poor and outreach had not come was our fault as parents and not theirs. SALT switched sides and also said there were 'issues' with parents. The SALT manager criticised ABA and our parenting.
We did an FOI request and found many emails arranging meetings with SALT / SEN officers / EP / outreach etc which we had no knowledge of. (More time was spent in meetings preparing ways to deny provision than was spent actually giving DS provision) The LA bullied our nursery who supported progress with ABA and were fed up they had got no support from outreach. The LA invented spurious breaches of disability act, blamed nursery staff for not delivering good intervention (although they had never been shown how), threatened to remove funding for all the children at nursery who had free funding (which was every child in nursery over 3 so would ruin their business), and just before tribunal they subjected two 20 year old girls who looked after DS at nursery to a 1.5 hour barrage of questions about progress and implementation of the statement by a panel of 5 LA professionals and the SEN officer then wrote up minutes of this for tribunal (never shared with nursery) to put the LA in a good light and us parents in a bad light (we were not invited!). The autism outreach teacher lied in her notes and at tribunal - looking at them it was obvious that every visit had been written up with the intention to discredit us at tribunal- it was clearly a tried and tested method as her notes bore little relation to what was discussed or what happened over the year.
At Tribunal the LA thought that discrediting us and talking about what a fantastic service they would have delivered had they been able to would be enough. However we had written lots of very reasonable letters asking for help, the nursery despite severe wobbles did back us (although they would not speak up about the lies as the staff were terrified of getting the nursery in trouble with the LA) they did support that the SALT and outreach provision had not met need and ABA had. We had a pro ABA private EP (with testing eg the IQ gains etc) and our ABA staff who had lots of data about progress at home. The LA EP was also stuck as he had supported ABA. He tried to say his report was not his own views but just his report of our views! He was in an impossible position though.
The Tribunal saw through the bluff. We won FT ABA because we argued DS had lost 18 months and he needed intensive ABA to regain that lost time and to get into school. Also because the Tribunal were not confident the LA could deliver programmes for DS having delivered nothing effective in 12 months. In effect we won what the LA EP had recommended 12 months earlier.
So it has been a traumatic journey to get here. But worth it. DS is now doing well - still massive challenges and delays, but both the ABA consultant (psych) and the LA EP (we still get on!) have seen very significant changes in DS since ABA began fulltime. He has a good profile to progress much further still.
We did wonder if the LA would offer the SS place, even at the tribunal door, but they never did - which was just as well as DS had made too much progress by then. He now needs mainstream peers to 'practice' on.
The advice we had was Tribunals award ABA for 2 reasons: 1. lack of progress or 2. very challenging behaviour which cannot be managed in LA mainstream or special school. You also have to show ABA will work for your particular child. Whilst the year of watching DS fail in nursery was hard, we would not have won what we did without that experience and evidence. It didn't feel like it at the time, but it worked out for the best.
It is a real shame that LAs do not want to bring ABA into mainstream. It has really worked for DS. In effect DS has a special school education delivered partly in a mainstream setting.
In fact the SS nursery approach would have been similar - HF children who used to get in would go from age 3-6 (an extra year in nursery) and then transfer over to mainstream very gradually eg one morning a week at year 1 or 2 with the SS staff training the mainstream staff. Our ABA approach is similar DS will build up gradually and ABA will work with him until such time as he can manage without them or a mainstream TA can be trained to do it.
Your blog is absolutely right - you must trust your instincts. We were told many things about DS - about where he should go, what level of support was enough or too much, about his IQ, whether he would regain language, whether to use PECS and visuals or push speech, how much time to put him in school. I can honestly say that despite starting off as knowing nothing about autism every single decision we as parents have made about DS has been proved to be the right one. So if full-time school does not feel right, it probably isn't.