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

Speaking from past experience, you will be better off with a consultant to start with.... You can start off with just the tutors but as a parent you might not know what to look for initially... You will be relying on the tutors who will be applying their knowledge from other children which might not apply to your DS. So a good consultant will be able to analyse the behaviours of your DS and provide training accordingly.

You don't necessarily have to have the £100/hr consultants.. There are some good ones out there who are starting out and will be asking for less than that.

You can choose to see the consultant when you can afford it again keeping the costs down.

Where about do you live? London seems to have a good supply of tutors and BCBA consultants.

We started off three months ago and we are struggling to find the right tutors so much so that we are moving 100 miles away as we can see there is potential if therapy is applied correctly. I have seen the difference it can make and it is an amazing feeling when your DC learn new skills. Think of the money as investment in your kids future. The money you spend now will make a heap of difference to your and your DS's future quality of life. Give it a try and you won't regret it.

Sorry, I just went off on a tangent there. You can run the program yourself without any consultants or tutors. There are some really good books which explain the principles of ABA. You can buy the VB Mapp curriculum which can help you assess your DC abilities and gives suggestions with regards to play and teaching. I will have a look and post the books we had.

So yes, there is an halfway house, you can do it all yourself.. But my personal recommendation would be to get a good BCBA consultant even for couple of visits just to set you up.

Do it yourself and pay for support guidance as and when you can afford it.

You can learn and apply ABA alongside LA provision as long as LA provision not seriously undermining it.

Don't despair.

Your take on how it usually runs is accurate but there is flexibility in ABA provision if you are determined to find it.

Where in the country are you?

And I don't think there are many of us that aren't pissed off that we've had to make horrendous sacrifices due to the fact the people PAID to help our kids are hopeless.

we ran our programme with a consultant (who is expensive, yes, but was worth it in our case) - he came every 6 weeks or so but sometimes it was 8-10 weeks, depending on various factors, at £500ish for a full day (and boy was each day worth it's weight in gold)

and then it was either me (using techniques from consultant days, from reading and research etc) or an untrained tutor (worked better for us to have someone not in the know, trained up in dd1's ways and needs) at about £8-10/hour, usually for between 8 and 12 hours a week.

it is still expensive, and the costs do add up significantly. but we got our own ABLLS (precursor to VBMAPP - by the time that came out dd1 was at ABA school) and did a lot of the initial assessments ourselves, which saved a lot of expensive time.

no supervisors or team of tutors for us - couldn't afford it, and didn't want (or need) it. paperwork - yes, reams of it; it is all about data collection (especially if you are trying to prove efficacy to gain funding)

dd1 had a home programme alongside first of all mainstream preschool, and then alongside LA funded ASD preschool for a bit. it can be done.

and yes, totally pissed off we had to pay to prove that dd1 was able ot learn, when the people paid shedloads (dd1 was funded at a private ASD preschool) dismissed our knowledge, and wrote dd1 off completely - when she was jst 4 they told us we would have to accept that she was 'unable to learn at school' - - great.

the costs were huge, and came at a time when w struggled to meet them (when is it ever a 'good' time to find spare cash?) which is why we had such and ad hoc informal programme.

but it worked for dd1, and just as importantly, for us as a family.

as other have suggested start by doing it yourself, that is what I did and only after a year got a consultant onboard once every few months who said I did really well considering all done by myself and had a baby at the time.

£500 a day seems a lot for a professional advice yes, esp when its required long term but please dont forget its an investment rather than expenditure. You will probably not go out for meals, treat yourself to new clothes or go on holiday...but you will never regret. And I used to charge over 1k a day to the client for programme mamangement so will not think twice to pay £500 even though finances have been tight since I stopped working.

Search this forum, there are lots of useful comments and techniques from parents, I initially spent 3 days just browsing and cutting and pasting things to a word doc and spent 2 weeks digesting it before using them.

We were beside ourselves with panic re how we could afford ABA....we started off having to beg, borrow and steal from relatives, and then when ds1 made such amazing progress in the first month the spiral of panic became worse as we didn't know if we could rely on peoples' generosity for more than a few months!

We had an amazing consultant, who would come once every month or two, £150 for 3 hours (tbh can't see what more she would have done with ds1 over a whole day) and we started off with 12 hours a week of therapy, with tutors at £15p/h. One was v experienced and acted as our supervisor too. It worked wonderfully for us.

What I will say is that our lack of funds drove us to apply for a statement (and thereby ABA funding) v early. In fact we kept telling our benefactors that they would only be needed for 6 months max and then we just kept everything crossed! Thank God that's how it worked out, and 6 months after starting our home programme we won 27 hours p/w of funded ABA. Flying by the seat of our pants, but somehow it all fell into place.

Surely it's a rare family that can afford to fully self-fund a programme for years on end. Almost everyone I've ever known that's done ABA has ended up getting full or partial funding.

we self funded - yes £500/day for consultant fees, but far less than £100/hour because the day is a very long one! Our consultant did some extra training days at the beginning which he didn't charge us for & he also gave us masses of phone/email/skype support too. Once the programme was up and running we saw him 3/4 times a year.

We had one very experienced/expensive tutor (£15/hour) who did 10-12 hours a week (& was more effective than all the cheaper less experienced tutors we've had combined). At various points we've had other tutors on to of that - at most we had three tutors covering 24 hours a week, we hated that & it didn't last long - when money has been even tighter than usual we've dropped hours.

I did lots of hours on top of that & did all the preparation & lots of the assessments. We didn't have a supervisor, we do minimal paperwork (no team to co-ordinate, no intention of trying to get statement/funding). If we hadn't have found such a great tutor I would have got a child minder for my younger children & done the hours myself. I wouldn't have reduced the consultant hours though.

I'm not sure about the funding issue - I know of five families running programmes in my home town & none of us are funded. I'm not sure how many have tried & failed, or if like us they've just done the best they can do informally.

(we funded it through DLA, CA, CTC & a chunk of monthly income - dh is on a low wage & over half of our total income went on ABA for nearly three years. I am delighted that we've stopped the formal programme now (though I still use ABA methodology & we have the occasional ABA day with the consultant) but I don't regret doing it in the slightest)

Thank you all for your help and advice. It's so good knowing there are people out there who know a lot more about it than we do and are happy to share.

Hmm, a windfall would be mighty handy right now. I won't be dropping out of the work Euromillions syndicate, anyhows.

starlight i'm London way. If you must insist on this silly fashion of having asd child it does appear to be the place to be

WorrierPrincess

ABA is a most ill used term on this forum.
Applied Behaviour Analysis (ABA) is an approach to modifying behaviour and there are vast array of programs which have their roots in ABA.
So initially you need to find out which type of ABA base approach or approaches any provider or consultant is qualified, has experience of providing, and parents who are making comments about their experiences should specify which forms of ABA have been useful or not useful for their children.

The most commonly reffered to ABA programs are included on the ABA Philosophy (HANDS in Autism Diamond) which includes
Positive Behavior Intervention Support (PBIS) also known as PBS
The Picture Exchange Communication System (PECS)
Discrete Trial Teaching (DTT) (commonly associated with the work of Dr. Ivar Lovaas)
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)
and not included in this selection is Moondogs current favourite
Precision Teaching

Each of these ABA based programs has different appraoaches, methodologies, and teaching methods which need to be defined when describing and commenting about ABA in general. Otherwise these threads become so miss leading to others who are trying ot understand what is being is being discussed, and can make a thread like this almost meaningless as few if any mention or name the specific program they are talking about. And not the best quality of advice when talking about such large sums of money for private provision.

Dolfrog as always your posts are detailed and entertaining but you are not in a position to comment on what ABA is and isn't as you clearly have little understanding of it yourself.

Your 'Hands in Diamond' is helpful but by no means definitive.
What makes you think that this little diagram is the authority on behavioural interventions?

'Each of these ABA based programs has different approaches, methodologies, and teaching methods'

This is an inaccurate comment and needs addressing as the key issue wit any behavioural programme is that topographically they may look different but the methodology and teaching remain the same. That is the whole point.

I refer you to the defnitive paper on what ABA is and isn't.
Baer, Wolf & Risley, 1968 JABA

It's important to read as well as to link.
Hope that helps clear things up for you,

HTH.

It's important not to pathologise every behaviour, Lenin yes.

We all sometimes (or quite often) display less desirable behaviours and it's part of living.

Oooooohh!!

I once saw some pretty horrid ABA where an under two year old who's parents worked very long hours expressed distress when they left the room at weekend.

This was seen as negative behaviour and a programme written to 'deal with' it.

how did you all go about finding a consultant for ABA and then tutors and whats the difference? sorry im really new to this as starlight and moondog know am looking ontop ABA now and am really confussed about how to get going and how to find the right consultant to start me off? any help much appreciated.

moondog

Great if you are living in the 1960s before neurology and other technologies had made their present day advances. And even making excuses as to why some ABA does not stand up to Randomised Control Trials.

The only research regarding ABA from the last decade which was not funded by the ABA industry was the Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model 2010.

Now if you can provide more top quality current research I will read it, but you must stop going back in time, as you might find a real dinosaur looking at you.

The HANDS diamond is only a useful diagram used to provide a summary from the HANDS web site There are more links I can provide.

Started with finding a consultant who set up the programme, trained me and two local mums who were going to be tutors as well as me. She showed us how to teach dd and record data. She then saw us fortnightly for two to three hours to assess how we were getting on and to change / adapt programmes. You can however have less input from consultant but in our case she led the programme and decided what to do next and also made suggestions when it wasn't working etc. Later on I added another tutor with more professional experience who helped also with running programmes and making resources. We did about fifteen hours a week to start with in five three hour sessions. The max was about 22 hours. Also went part time to nursery. I would try and train people up rather than spending a fortune on high tutor fees. If you can do some yourself this will also help.