ABArrrrrgh! Shocked at cost - help!

[WorrierPrincess]

Well if I wasn't pissed off enough about DS having asd, I'm now seriously fuming about the cost of therapy.

I've been looking into setting up an ABA programme via consultants, and have been astonished to learn the initial cost of assessment and training is spiralling into thousands of pounds. WTF?

Part of me feels so overwhelmed by having a DS I so desperatly want to help that it's tempting to say "oh just take the money and fix our son!!"'(yes I know, it's not a cure).

But seriously... thousands just to set up some unregulated, unaccountable programme? Needless to say DH's reaction was: forget the ABA altogether and pin our hopes on the LA's preschool nursery for ASD kids (DS might get five sessions a week from September in a small group, using TEACH of course)

Well that's filled me with despair. From what I can see, the LA's help might stop him falling further behind his peers but it's hardly going to help him catch up.

So is there a halfway house? Naively I thought we could just take on somebody already experienced in ABA to work with DS two days a week, and also train us so we can make it part of our parenting. I was expecting to have to pay somebody experienced a reasonable rate but upwards of £100/hr....

Do you need a "case manager"? A "supervisor"? All this effin paperwork? I want to help DS, not run some sodding bureau.

Heeeeelllllppp! (please) x

It's fantastic that he has got into something that gives him focus and structure and purpose and a community to be part of.
I think what you say about the concept of preparing to start helping him live his life as opposed to just getting out there and getting on with it is very important.

In Acceptance and Commitment Therapy(ACT) which is a behavioural intervention, one of the things they teach you is to use 'and' instead of 'but'. It's simple but hugely powerful.

So

I want to go and do X but I'm scared'

becomes

'I want to go and do X and I'm scared'

Kind of feel the fear and do it anyway stuff.

No reputable ABA professional would keep on advocating that EIBI stuff for years and moreover, would not claim it is effective for everyone. That doesn't mean to say ABA is not a useful framework for all, regardless of ability or diability.

We use Active Support with older kids, teens and adults and that has been brilliant. Not a table top activity in sight either!

My issues with ABA are largely around table top work (particularly for those with severe autism - and especially when used at length) and the cost. Otherwise I don't have an issue with it, and yes agree it's a useful framework. Life would have been a lot harder with ds1 without an ABA slant (reinforcement and breaking into small steps in particular). And ds3 as well tbh although he's NT!

It makes sense justabout :)

Will google active support ....

Oh active support looks interesting (as ds1 races towards adulthood - eek). Thanks for that moondog, have to do some work now but have bookmarked a few pages to read later.

A great deal of that more traditional style table top work is frankly, pointless (not all) and was carried out by people who really didn't understand issues of motivation and reinforcement. The book I linked to has a useful discussion on this.

But, each profession grows and changes and learns from past mistakes and ABA besed education is no different.
EIBI style input is not my main area of input or expertise.
I'm more interested in Precision Teaching, Active Support and opersationalising higher level communication disorders. A wide range of behavioural interventions for a wide range of ages and abilities.

Is there hyperbole in his book?
Providers are business people so I suppose they have ot make a case.

As a public sector sort I have nothing to sell.
I don't know any providers.
I am only really familiar with other public sector workers and researchers.

There were times when table top work worked well for ds1. And times when it really really didn't work for him. But I felt there was an expectation that he had to change to fit the program, rather than the other way round. Which with hindsight was how it should be.

I also think there are issues with consultants (not confined to ABA) where you can end up handing over your expertise about your child to someone else. But that very much depends on the consultant/professional and how individual they are in their approach to each child. I have met some great ones, and some not so great. For us it's important because ds1 is quite an unusual child. Severely autistic, but very sociable, very cheeky, who constantly cracks jokes, - with strange motor planning problems. Huge gap between receptive and expressive language largely due to his severe apraxia (although that is narrowing rapidly now he has his talker). Anyway long ramble, but we found that if people had a 'severely autistic' program they used and didn't adjust much between children it was fairly hopeless for ds1. Now I tend to think there is no-one alive who understands ds1 as I do, so I prefer to work very much in partnership with people, rather than with someone supposedly the expert above me. Hope that makes sense! It took me a long time to get that confidence although looking back it was really relevant right from the beginning, and I ended up doing things that felt wrong (and were wrong) because a consultant told me to.

I certainly believe in the issue of the parent knowing the child best.
With my own child it was both a shock and a revelation that I was best placed to do this, as I had a lot of (as it turns out, utterly misguided) faith in the power and ability of peopel whose job it was to address my child's needs.

I will refrain from posting about my feelings and reaction to discovering it was all a case of Emporer's New Clothes.

But some objectibe observation and advice by people who know what they are doind is always useful.

Leningrad, that is a dramatic statement to make but I much prefer that 'can do' attitude to that prevalant in the pubnlic sector where the pretence at following a 'social model' often means that people efectively write off kids at the age of 3 or 4 'because that is how he is and how he has a right to be'.

I objecvt strenuously to having the same attitude to individuals with learning and language issues. The needs and expectations of a 4 year old are very different to those of a 54 year old yet up and down the land, you will find 'multi-disciplinary' teams who view them in the same way, which is both unacceptable and immoral.

Oh yes agree with the objective advice. And I seek out people. But I'm much more confident about dismissing some people who are supposed experts as clueless these days and really valuing and probing (in a nice way :) ) those who do know what they're talking about and who can see ds1 as an individual.

I sometimes felt when working with consultants there was little room for me to say an approach wasn't working and needed adapting. Some of the approaches seemed a bit stuck on dogma. But that's not an ABA specific complain by any means.

I think the main problem is that there is very little grey area for early intervention. For many parents it is EIBI or nothing much.

At that stage in a child's life there are no compromises. The child yet isn't a problem enough for any agency to seek the parents 'help' and so getting ABA into their educational setting is nigh impossible, particularly given the dire understanding of SEN in the early years and the whole EYFS curriculum with child initiated learning at the centre.

The EIBI route with its with flaws, the best you can get often and it almost always has to be at home. Consequently the expertise is of home-based programmes. It's a catch 22 situation.

Despite efforts of humungous proportions agencies involved with DS talk about ds' ABA as isolating and robotic but have battled hard to prevent it from entering his setting and have refused to observe it elsewhere.

As a parent with extremely limited financial resources I have been unable to hand my child over to a paid for intervention with the hopes that it will 'fix' him (as is true of most on this board). I have had to evaluate value and efficacy and balance this with my own ethics and beliefs in attachment parenting in which (I am told by LA staff, ABA has no place for).

DS has 'moved on' from ABA as his main intervention, not by my choice exactly but because again I had to evaluate the options and realistic possibilities based on the needs of our family, his level of development, the chances of the 'type' of ABA that he would need being understood (not just by the daily practitioners but independent experts too) and the general availability of the expertise he would now need given his exceptional progress.

But, as Saintly says, the understanding of they key principles is what has and what will continue to make a difference to DS and our whole family for the rest of our lives.

Heck, I'm even convinced now that I can get our NT DD into a super selective Secondary when the time comes.

ABA is true evidenced outcome based education. It is NOT 40 hours of table top drilling. But how to convince the skeptics who are too scared that it's power might brainwash them if they either observe a programme or read research is something I am quite at a loss as to how to adress.

Yes ETR was a bad name.
I never considered reading it precisely because of the name and it was only when I began to read M & R I realised it was the smae book..
As always, peopel think EIBI and ABA are the same thing.
They are not.
Not one of the scores of kids I work with has what could be classified as EIBI.

All however have access to high quality behavioural interventions.

Tbh I think ETR is a modest name when targetting the American Market.

Just read a few posts. What we do is VBA which is far more relaxed than ABA. It's not about sitting at a table for hours. We live life normally -you can teach in any environment. The biggest challenge really is to make it fun so that your child doesn't realise that they are being taught at all.

Motivation and Reinforcement is really a brilliant book.

OP I think my consultant covers your area - would you like me to PM you her details so you can see if she can take you on?

And again, my consultant doesn't expect me to anally record everything - it's simply a case of putting down the date when we started a target and then she comes round she can easily see if he's met it or not. If I feel I need extra training to deliver something - eg we are doing what when why where questions as the moment and he is muddling them up a bit - then I just email her and we focus on that at her next visit.

The 40 hours a week thing is just so old fashioned and the cost so astronomical that it puts people off from doing ABA/VBA at all.