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

Ooh. I like ABA. And I like APD. But which one is best? There's only one way to find out....

PS: I am putting my cash in the one with the best chance of teaching them not to wake up at 5:45 every fcking morning.

For that you need a prescription !

We used a supervisor for £50 an hour for 8 hours a month (£400 a month), saw a consultant every quarter (£150 for 1.5 hours) and we did everything else. There was an upfront 2 or 3 day workshop (theory and practice with DS) which cost about £1500 I think
I did find it very tiring and hard to keep going, and after 6 months we had a tutor for 6 hours a week - and did learn a lot by watching her
After 12 months we won 35 hours a week of funding
You can apply to Caudwell Children for funding
It would be hard to going back to doing it ourselves but would still be better than what DS would get elsewhere
But I would take the nursery place too - hopefully you can persuade them to do some similar work - or if not you can prove your way is better
We used DLA and my parents coughed up a monthly contribution too.
If you go for funding via a statement you need to allow for expert / legal fees and that why we decided against tutors as we could not pay for both

ABA is just a fancy acronym for using techniques based on behavioural psychology, to use rewards to make learning (aka modifying behaviour) more likely Which parents do, all the time. Child doesn't fancy a bath: mum adds bubbles or a plastic duck: child gets in and has fun. Next bath is a bit easier.

Usually, an ABA programme will do this more formally, more intensively, more carefully, and with more planning. There is no argument about the effectiveness of breaking down learning into little bits and teaching them exceptionally well. There is debate over whether 'programmes' have sufficient research data to justify public funding, though Britain's 'usual care' has even less data. Personally, I'd say learn about the methods, try them out, measure effectiveness and then decide whether to pay for a 'programme' or ad hoc.

Dolfrog's specialism is auditory processing disorder (and other processing issues) which can be misdiagnosed as ASD. If the diagnosis is wrong, ABA is less effective because the opportunity to properly target the child's needs is missed.

Perception. I think you are being a bit naive.

We lost our tribunal for ABA because the school 'said' he was making progress despite not producing evidence and because no LA person had recommended ABA, only professionals paid by the parent.

On this basis, and despite our reams of paperwork where he LA had nothing, we lost our ABA case.

maria and perception I think you are probably both right
There is evidence that ABA works very well for some children, and especially for under 5's
There is evidence that ABA works no better than other ASD specific methods (e.g. ASD nursery) for some children
I know of no evidence to show mainstream+outreach+NHS SALT is effective for ASD, especially those at the moderate or severe end who are much more frequently placed there now.
Most ABA consultants will say all children benefit to some extent
If we are saying does it justify publicly funding then we then need to decide what outcome we would need to see to justify the cost
For very prem babies we spend the money to keep them alive regardless of what their outcome will be - we fund every single child however slight their chances.
Other medical interventions are rationed and NICE will say if the cost:benefit ratio means it can be used and funded and if so for which cohort.
Society needs to decide what it wants - does it want to fund all children whatever the cost (unlikely to happen), does it want to fund those children who have the best chance of it working (in which case we need more research to find out which cohort and why they respond), do we want to fund all children for a short time frame (say 12 months) and then only continue to fund those children who have demonstrated progress, or do we say as we don't know which children will justify the expense so we won't bother funding any.

We also need to look at all the costs of various provisions e.g. adult social care, reliance on welfare benefits later in life, impact on parental incomes (and resulting lost tax take)

This debate needs to be had, but unfortunately as there are so many ABA haters / doubters out there (most of whom have their own self interest be it money, or preferred alternative method) we don't seem any closer to having a sensible discussion about it. At the moment we have rationing by tribunal in that only those parents with the ability and means to push it through appeal get ABA.

DS is moderately severe ASD and his programme is much more involved than something you could get out of a book - he has very difficult ritualistic behaviours which are really dominant. If he were not doing ABA he would not be in mainstream he would have to go to a specific ASD school, so in his case his ABA is (I think) very good value as the alternative would actually cost more.

ABA works well for everyone under the son.

What you are talking about here is EIBI (early intensive behavioural intervention) and the outcomes for children with ASD and the costs associated with it.
What is desperately needed is a proper evaluation of costs now versus costs later (damned expensive to keep a kid with ASD in a 365 24/7 school).

Some of my colleagues are doing very exciting work in this area.
Eldevik in particular received matched funding to run what could loosely be described as EIBI but for 2 hours a day. EWith no extra money and 10 hours of specialist input, results were very encouraging.

Also other interesting work going on on evaluating quality of input and work as well as the ABA Competencies project being run by Loiuse Denne of Treehouse which will ensure quality control of providers and therapists.
Here

Oh and British branch of BCBA being established as we speak.

sun

Sigmund Eldevik; Richard P Hastings; Erik Jahr; J Carl Hughes
Outcomes of behavioral intervention for children with autism in mainstream pre-school settings.

Can't link at present but here is Eldevik ref.

moondog

You seem to have not been to provide a link in the post above to some of the ABA industry sponsored research. you have listed the researchers.

For any program in any area to gain official recognition it is now the GOLD STANDARD requirement to to prove successful outcome as part of a Randomised Control Trial research procedure. And to date the only ABA randomised control trial relating to ABA is the The Early Start Denver Model 2010 research. The Picture Exchange Communication System (PECS) which has its roots in ABA is also a well recognised as a Augmentative and Alternative Communication program.

The ABA industry promotes ABA without describing all the aspects of ABA but only discussing the promoting the specific for of ?ABA that they are able to provide, or willing to provide. So the ABA industry are all who have any form of income based on their comments, research, etc, and their sometimes unknowing supporters.
So if you were more able to discuss all of the various ABA related programs, all the variations os that we could all understand the wide range of options which are all part of ABA, then you could be considered to have an independent voice. But you are advocating for the Discrete Trial Teaching (DTT) (commonly associated with the work of Dr. Ivar Lovaas) form of ABA only and only providing their funded research. So you could be considered to have some form of special interest in this type of ABA which you are not declaring, or not providing and reasons why you are not discussing as energetically the other ABA related programs. Especially the program that have engaged in a Randomised Control Trial research program.

Why don't you provide the link to the ABA industry that Moondog is allegedly mentioning because I am as confused as her about what you mean by it.

And for the last time Dolfrog ABA isn't a programme it is a methodology.

StarlightDicKenzie

Very true ABA is a not a specific program, but the way you and others describe it you make it seem like a program.
And any ABA provide is part of the ABA industry because they derive their income directly or indirectly from using or providing ABA as you continually describe it, on these forums.

So if you begin to discuss all the the variation of ABA provision discussing the advantages and disadvantages of each process. That is when we start to have a non-industry lead discussion as to what ABA really is, how it can help different groups not only those who have ASD, which is what the origins of ABA are about. Especially when those who use ABA are very aware of all the reasons why they may need to make their own conscious decision to make changes to their behaviour. This could be debatable for some on the autistic spectrum, and being used more for parental control, which could be more of an ethical issue, and dependent of the ABA options being used.

I provide ABA for my child. Am I an industry?

Most of my skills were learned from MNers, are they an industry.

There is no variation of ABA. I use the SAME methodology regardless of which individual and unique, to my child only problem, I am trying to address.

Btw though, I do agree with you about the ethics of having such a powerful tool and it's use. I woukd never suggest there wasn't the risk of misuse in the wrong hands. But abusive people are abusive people whatever the tool they use.

StarlightDicKenzie

Parents doing things in their own home to help their own children is home based support.
Parent offering similar services to other parents for some for m of gain becomes and income, and therefore part of an industry.

If you have missed my first post on this thread you will see that i listed 8 variations of ABA, and from most of your posts you seem to be only referring to a single variation Discrete Trial Teaching (DTT) and calling that ABA.
What I have been continually trying to establish is which of these 8 or even more variations of ABA you have been using with your children at home, so that I can begin to gauge the various levels of effectiveness of each of the variations. So for instance I am gather that you are not too keen on TEACCH, and I remember silverfrog describing The Picture Exchange Communication System (PECS) as "pure ABA", which is most misleading.

So if and when you begin to discuss and compare
Positive Behavior Intervention Support (PBIS) also known as PBS
The Picture Exchange Communication System (PECS)
Discrete Trial Teaching (DTT)
Functional Communication Training (FCT)
Pivotal Response Training
Verbal Behavior (VB or VBA)
Incidental Teaching
Treatment and Education of Autistic and Communication related handicapped CHildren (TEACCH)
Precision Teaching
and any other variations of ABA, then we can begin to have a sensible discussion and move away from the marketing hype.

How have you concluded that I was referring to DTT?

ABA can be a good deal more than what you have written. In fact pretty much anything can be ABA. It is HOW you do things that makes something ABA, not which programme you follow, or whether you follow any 'program' (we do not - although if you forced the issue I'd state the 'National Curriculum' as the closest corresponding one).

8StarlightDicKenzie8

"In fact pretty much anything can be ABA"

Well you have just highlighted the problem. You seem not to be able to define what you are recommending to others. And you seem to be promoting a group of ABA providers who charge large amounts of money for "In fact pretty much anything can be ABA" So why should any parent buy into this form of fraud.

You need to define the product and services you are providing if you want someone to pay you money. And "In fact pretty much anything can be ABA" is the first step to fraud, or put another way anyone can set up as an ABA provider as ABA can be anything.

ABA is a methodology. Pretty much anything can be ABA PROVIDED you use the ABA METHODOLGY.

And ABA cost nothing to deliver, well perhaps the cost if a pencil.