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

PipinJo

There is no cure for APD, if you have research to prove otherwise the Medical Research Council amongst others would love to hear from you.

"I do not care to look at neurology of APD as ds has ASD which I have researched thanks and understand perfectly clearly."

ASD is not is not as yet a neurologically defined disability. ASD due to the sensitive nature of the problems remains one of the last conditions to remain defined by purely by behaviour traits. However recent research of the last decade has indicated both auditory and attention related issues to be part of the complex multiple set or sets of conditions which can trigger the observed behaviours. Currently international researchers can not agree what ASD is and the debate regarding the DSM5 to be published in 2013 definition continues. So you can only claim to understand the ASD issues your DC has, which will vary from those of other ASD children.

APD is a listening disability, or having a cognitive disability which prevents you from processing all that you hear. APD can be one of the multiple neurological factors which can combine and trigger the observed behaviour traits, especially if the APD or other information processing disabilities an ASD child can have are not being understood and accommodated by both parents, and those providing professional support at home and in the education system.

There is a general lack of good quality professional training in the UK especially in the education and health systems which is really down to the governments lack of willingness to foot the bill by increasing taxes to pay for the training and expert knowledge our children need. So as a result we have badly qualified diagnostic, and support professionals in both the NHS and private sectors, and poorly trained teachers and support staff in the education system. So we have been let down by UK politicians for not taking the correct decisions regarding health care provision and education. But we do not blame the politicians we blame the poorly trained professionals.

Perc, the LA didn't really do much more than exaggerate, at least not that tribunal (this one is a whole other ball game), it was the panel who lied and made up evidence where there was none. But anyway......It's the only system we have.

Tribunal panels are trained in ASD by Birmingham University who have the national contact for training LA staff in the TEACHH approach.

I have found ABA to be very useful though obviously this is just my own case study of one . But with all this emphasis on rigorous research , what do LEAs say when asked about research evidence for TEACCH ? I have only ever found one study published in BMJ which concluded the evidence for it was 'weak'

StarlightDicKenzie

OP was asking about the cost of ABA provision "£100/hr" and then you say the cost of provision is the cost of a pencil. There is some huge discrepancy here.
You could get a life times supply of pencils for an hours fee. Sounds like a bit of as rip off unless you can justify that type of fee. So from what you have been saying ABA should come free at no charge, may be some basic travel and food costs. As you have said repeatedly there is no program to provide. just some one to one attention may be which the education system is not adequately budgeted to provide.

£100 per hour isn't the cost of ABA, it is a fee requested by someone the OP was considering employing.

Outsourced provision will probably charge the market rate. The market rate is set by factors such as gate-keeping to adequate provision, ignorance, demand and lack of availability through usual and one might argue, sensible channels. The market rate may or may not reflect good value. There are alternatives to paying the market rate though due to the above can be hard for a parent to organise and navigate. This is not a failure of ABA but of the SEN system that forces such common-sense, cost effective and what should be cheap provision, underground.

£100/hour is also not totally out of the sphere of 'usual' private fees.

I paid more than that for legal representation for Tribunal, and more than that for dd1's private OT, and more than that for her private SALT too.

I have paid about that to sort out her dietary issues (again private practitioner), and have paid more than that for private dentistry and health care.

it is expensive, yes. no one is arguing that it isn't.

and caution should always be exercised when asked to pay that level of fees - research what you are getting, who you are paying, etc.

but charging £100/hour does not alone mean that whoever is asking that is a charlatan and attempting a rip off. I have met professionals who I would not pay that fee to, and others who I would happily (!) pay double that, such has been their effectiveness.

Hiring an ABA consultant/supervisor/tutor is like any other area in life. I could send dd2 to the (very good) local state school, but do not, and instead pay for ehr independent school. I could queue up for hours every time an nhs dentist opens, but do not and instead pay for private care.

ABA can be done via a whole lot of research - from here, from books, via the various assessment frameworks - and done by the parents for free (cost of time and effort), or it can be done by hiring professionals, who charge a range of fees.

there are always numerous threads asking who to use (consultant-wise) and what ballpark figure to pay (supervisor/tutor rates). I am always happy to say what we paid, and also to state how cost effective I think that was.

oh, meant to add:

none of the professionals I have seen for any reason have ever charged 'just basic travel and food costs' - why would they? they are doing a job, one they have often spent years learning/building up.

it would be nice of the world worked on such an altruistic level, but it does not, on the whole.

I do agree silverfrog, that those fees don't automatically mean charlatan.

In the US ABA professionals a hellova lot less and therapists can be 2 a penny, but security, career progression etc. come with those jobs there often. Many are paid for by the public sector too with the perks that can come with it. Economies of scale can help too as ABA professional can work with a range of families within a small distance rather than having to charge high travel costs and hourly rates that reflect lost earnings whilst travelling.

If Moondog were ever to agree to take on DS I don't know what I would agree to pay but it would probably make my DH's eyes water.

My point though is that ABA can be expensive for reasons 'other' than Dolfrogs claims of fraud, (although I would be uncomfortable claiming that there wasn't ever fraud) and that it isn't ABA itself that is expensive but the kind of set up that we have here that makes it so.

sorry, Starlight - my post was more in answer to dolfrog's than yours. I should have made that clearer.

I agree, btw, re: being cautious to claim 'never any fraud' - I met with people who I have run a mile from (very swiftly!), who I know could never have delivered what they were promising.

I do wish the whole thing wa sso much more transparent. I am comfortable with who we used, and what we paid. we got value for money, and then some. I will be forever thankful that we could 'aim high' so to speak, and go for someone by reputation, with costs a secondary (although nonetheless important - we were pretty broke when we first set up dd1's programme) concern.

agree too re: USA vs UK set up and the different economies of scale/job securities etc. of course, what brings all that about is the acceptance of ABA as a valid and effective course of action - it is not the 'dirty word' that it is over here.

You received an abusive PM from Dolfrog?

I don't always read the ABA threads, so wasn't aware of past history. . Meh.