ADOS Results Meeting - no professionals involved have heard of ABA....

[PoopyFingers]

Can anyone give me guidance on the results meeting for ADOS?

DS1 (4.5) had this in September, at which I was present. He didn't "perform" well at this, and did exhibit several typical ASD behaviours (turning head away and refusing to play with puzzles he didn't like, and getting upset when given dolls and furniture to play with etc)

Afterwards, I asked the Dev Paed and SALT who were both present what they think of ABA therapy. Paed shook her head, hasn't heard of it however SALT said that she knows nothing about it, but I should not do ABA as "it will stop working if you stop doing it" .

I have received a letter with an appointment in a couple of weeks at which 8 professionals will be present: Paed, 2 x SALTs, head teacher, class teacher, TA, Preschool Home Visitor (well qualified, ex teacher with MSc in Special Needs and Early Years) and Parent Support person.

Not one of these people has particularly heard of, or experienced ABA.

Several of them have told me to avoid silly and expensive miracle cures like Son Rise etc, offered to desperate parents on the internet. Apparently ABA is one of these...

I find this really quite insulting TBH. As far as I can see, ABA stands up well to research etc, and it does not purport to be a cure, simply a strategy for behavioural modification.

Ideally I would like to quote research papers on the efficacy of ABA - but am not sure where to get these (have tried Lancet and PubMed with limited success)

As all these people will have a bearing on DS's education in differing ways, I would like to use this meeting as a springboard to getting him ABA paid for by the LEA (in Scotland here, where there are no ABA schools )

DS is a friendly, affectionate little boy, who would respond very well, very quickly, to even a small amount of ABA, or ABA for a short time.

Can anyone offer advice on what to say at this meeting?

But isn't ABA a really cost effective solution (in the long term of course...)?

That's where cost arguments fall down. You can't have something expensive in the short term despite it saving money in the long term on stuff like residential schools, carers wages, not to mention parents being out of paid employment and not paying into taxation system / economy etc.

Shite isn't it?

Some things to consider:

There is a vast body of evidence supporting the use of behavioural interventions with children with SN.

Home based early intensive behavioural intervention (EIBI)-what you are discussing here is expensive. People go for it because they feel they have no choice.I dont think a home based programme is ideal in terms of ££ and disseminatioing evidence based practice to the powers that be and their minions.

Bog standard educational provision for children with SN is expensive,very expensive. Factor in the s/lt, OT, music therapy, ed psych and so on to say nothing of countless meetings and reports and it adds up to a huge amount. If you want to know just how much, put in an FOI request to your LEA.

Home based EIBI in addition to bog standard educational provision would cost a bomb.

What is needed is a radical shift in curent pactice whereby bog standard provision with scores of peopel traipsing in and ut of your children's lives is replaced by a tighter leaner model with radical one stop assessment with something like ABLLS or VBMapp at its core and minimal inteference from outside agencies. Rather, leaving classroom staff in peace ot get on with a powerful data driven evidence based programme based on discrete trial trainnig and powerful reinforcement schedules.

This isn't just good practice for kids with ASD, it is good practice for all pupils, particulalrly those with SN.

EIBI is only one of many behavioural interventions. There are many-PECS. Precision Teaching, ESDM, Direct Instruction, Headsprout, and many many more.

There is more and more evidence emerging to support low intensity behavioural programmes with a variety of children.
Here's one more or less hot off the press that is causing a stir at present.

This is them odel we aspire to where I am based-publc sector cost conscious behavioural interventions for a wide range of children, Thanks to an enlightened LEA, PCT and access to a top class university which runs an MSc in ABA, this is what we are and will be achieving, with fantastic results that make everyone happy.

Frontline staff, bean counters, parents, children, academics, mandarins. Everyone.

As I said earlier however, SN is an industry and one that keeps many peopel in business. If you can show that you can do ten times as much work, with fewer staff, you also have a lot of panicked peopel worrying about their futures.

Money:

Our school-based ABA programme cost less than the LA's preferred intervention. It is more expensive than it could be because we do not have economies of scale and the non-mainstreamness of the approach pushes up wages. Nevertheless, it is still CHEAPER.

Are our LA provding it then?

No. They are paying a very expensive solicitor to fight us against it even though we are currently unrepresented. They are paying themselves shedloads in tribunal prep.

The crux of our case is that we would like the LA to divert £900 from their own salaries to a member of our team and by doing so, save themselves a further £3k.

It isn't even about the money any more. It is about the model like mine getting 'out there' with other parents realising that they can get better provision from outside agencies for cheaper than the LA provision.

Their sole reason for instructing a solicitor (with tax payers money) is to try and keep their jobs secure.

Incidently, this is an LA who has just won pathfinder status for their desire to move towards personalised budgets.

Will our family be one of the selected families? Given that we have an excellent evidence-base tracking system set up, can provide an education cheaper, will be able to demonstrate anything they like, clearly against set criteria?

ha ha ha ha ha ha ha ha ..............................

I mean ds has a number of hours 1:1 specified in his statement. The cost of that is more expensive than the same number of hours provided by ABA tutors.

The cost of the number of hours of Autism Outreach (to include Advisory Teacher and EP) that they want to give ds, costs more than our consultant delivering 1.5 times the number of hours.

And the SALT (this is a bit of a contentious one) costs 6 times the cost of a highly trained ABA tutor (who incidently happens to be a SALT) alternative to work on verbal behaviour which has shown to be more beneficial to ds than 1:1 pull-out-of class type of intervention.

I think Starlight is right. There is a big cosy vested interest in SN provision (and probably in others that I don't know about). People with secure jobs, guarranteed pay rises, great holiday entitlements, pensions, plus status of doing a worthy job. In my experience they are very charming people. ABA consultants and even more so tutors have no such security or official recognition. No wonder the LEA people shudder at the thought of it.

Sorry poopyfingers but as Scotland has no such thing as statements your best hope is DLA. Or all the ASD families in Scotland band together and try to change things, but that would be years away.

Worthiness is also a big problem imo.

If these people were to go out and do REAL work with children with ASD. Real work that made a difference then they would be working as hard as my tutors.

Instead, they get to swan in and out of desperate parent's homes, give them a couple of pieces of laminate, talk to them like they are five and tell them that they are lucky to be living in such a great and forward thinking LA, to which most poor parents are just so bloody grateful for given that they have by then been prepped to have such low expectations.

They get to travel from home to home listening to the radio, drinking takeaway cappucinos with no timesheets to fill in to account for their time, and simply arrive at the child's house with the 'resources' they bring to all children's houses (usually bubbles and laminate), be offered tea, sometimes cake. Go home and have their family and friends tell them how wonderful they are for working with poor little disabled kids.

If a parent dares ask them on what basis they make their recommendations, they get hostile and call in social services for refusing to 'engage' with much needed therapy. They might even write to your GP to suggest you are investigated for a personality disorder.

BTW, if anyone is wondering how we can do an ABA programme so cheaply, compared to others then the answer is this:

Tutors themselves are not that expensive. They can come in easily lower in terms of cost than the LA untrained TA because there are no on costs, pensions, agency fees etc.

Consultant fees vary and can be hugely expensive, but if you look around hard you can find ones that are not. With highly trained tutors, you don't need many consultant visits.

Most ABA programmes run for 32 hours a week for 48 weeks of the year. For most pre-school children you are comparing this with the alternative which is 15 hours a week for 38 weeks of the year. If you compare like for like, there may not be much in it. The argument here is whether or not the child needs 32 hours as opposed to 15, and 48 weeks rather than 38 rather than whether they need ABA or LA alternative.

Hope that helps explain.

justa I think we crossed posts. I have just explained how and why the costs thing works for us and how it needn't be different for others.

Residential ABA might be £75k, but I think again, that it first has to be established that the child needs residential, and then, the costs are not always too different once you have added in all costs of support etc. I think most residentials are in excess of £55k.

And in terms of generalising across professionals, you are right. I sincerely expect that the reason our LA are so against what we are trying to achieve is BECAUSE the professionals ARE useless.

My child gets the £50k and he is worth every penny [hgrin].
If the LA were to award him the best maintained special school intervention in the County it would come out at £37k+transport+TA for lunches+SALT+EP and that would be 38 weeks not 48 weeks. So little difference. The £37k is the actual cost, it includes the add on costs (holiday pay, HR, sick pay, pension, training, LA Management, monitoring etc etc). I have the true figure because it was a new provision and had to be properly costed for the Council Executive. If I asked the LA they would try and say the cost was about half of that or use the nil cost to us argument.

Thats not to include the cost of tribunal appeals to the Council (now on our third and my son is only 4) which must be £10k a pop in admin / paperwork / expert time.

If my DS does not get the £50k (and its only expected to be this amount for 2-3 years and probably reducing during that time, then he will fail in primary, go to secondary SS - probably out of area as there is no ASD provision for ASD without SLD, never work and need lifetime social care support. With ABA he is likely to be in m/s throughout and get a job / live at least semi independently.

Not giving him £50k now will cost £1-2 million over his lifetime.

However it is always going to be expensive if you do not invest locally and have to fund a indep place for 1 child. There is a school (is it treetops?) doing VB for £15k per child. But you still have to put the staff through training / BCBA etc for several years. If my child could do some ABA in a unit or small class it would be cheaper.

Even an untrained TA in mainstream including lunchtime (would need to train 2 TAs as DS too hard work) would be £30k (including add on costs) +outreach+SALT+EP+meetings+training eg Team Teach /restraint, so it would still be over £40k for vastly inferior provision. Of course the LA will say its £10-15k

We did ABA PT cheaply for a year and he has made massively more progress with a fully funded programme, for him it is worth it because he is very bright yet very severe and delayed. Also we live in a rural area so it will be more expensive than in a City.

It seems to me where you have a child who really responds to ABA and who has not responded to anything else and is making progress that is moving them up the spectrum then that is a good investment. I accept that if he stopped making progress then cheaper options should be investigated, but there is no way he would be making this amount of progress with anything else.

Whilst I agree that not every parent can do what I have done. I do disagree that it is beyond most parents. Certainly, the majority on here could do it.

One of the things about my particular circumstances is that I have drastically reduced my expectations. I am not asking for ABA in holiday time, nor to be done during school hours instead of school (whilst the school hold open a place). Do I think ds should have this? Yes, but you are right, I am confident at being able to deal with the holiday time etc. myself.

But I would still argue that my model, WITHOUT the holiday time etc. is still vastly superior to what the LA is proposing as an alternative.

Just to echo Star, I and every ABA-ing family I've ever met, have self-managed our programmes, so I don't think it's a tiny minority by any means. We started small but then even when our LA was funding nearly 30 hours a week the annual cost was around 25k. Including all team meetings, supervision and consultancy.

Yes, that's a fair point.

Also, I think it's particularly important with ABA that it's supported by the parents and consistency maintained at all times. I guess not all parents will want to or be able to engage with it to that degree

I did ABA my child for 12 months and by the end the programme was crap compared to the energy I had when I started. I was on my knees, my income was a third of what it was previously, my other children had forgotten what I looked like and someone should probably have stuck me on medication.
I think so much depends on your child. Mine is passive and hates to have demands on him. It is exhausting keeping him on task, his repetitive behaviours are sky high (but almost zero with good ABA staff). His progress is slow but steady. He has no self motivation whatsoever. He susses out the behaviour plan and we have to keep changing the system as he becomes immune / wises up.
He's an annoying combination of clever enough to find ways of getting out of work and too unmotivated / too severe to learn except when directly taught.
I didn't find it easy to do ABA after the initial quick gains in the early months.
He is still ticks the severe box for every trait.
But with good ABA he functions well above this.
Some children fly and they are easy to ABA; for some of us its a very long haul.
I don't think you can lump all ABA children (or parents) together.
I sort of resent the idea because I find it hard going I am not committed enough, clever enough or engaged enough with ABA.
Several autism experts have told me the really passive kids are the hardest work. I find it hard, I could not do it well without the fantastic very experienced (although expensive) team we have.
His progress in the year with a proper programme has been great, the year before (with me as his tutor) started well but fizzled out to be a bit disappointing given his obvious potential.
There are lots of kids on ABA who probably would have done ok anyway. It would have taken longer, been less comprehensive, but they would have had a good outcome as they are motivated and HF and easy to teach and the sort of parents on here would mostly figure out an ABA type style anyway.
For my DS heavy duty ABA is his only chance. Without it he would be sitting here in 40 years time still playing Old McDonald 50 million times over.
If he did not have ABA for 6 weeks he, and we, would fall apart.
I know of several non verbal / challenging kids in late primary / secondary who have ABA and I doubt their parents feel they could do it themselves either.
And Treehouse is full of kids who, but for ABA, would be in residential school.
I think it should be recognised ABA is not just for HF kids, all children on the spectrum benefit. Treehouse may be £75k or something but thats still cheaper than a 24 hour residential curriculum (about half).
For some LAs having a kid at Treehouse saves a heap of money.
Some kids are expensive wherever they are placed.
And that shouldn't be a reflection on their parents.

Agnes, my ds wouldn't get by without ABA. I've a tribunal deadline tomorrow and I'm up ATM going through all his very depressing reports. He is also very passive. However we have 1 blindingly massive stroke of luck and that is his interest in other children. He attempts initiation by teasing, poking, spitting and deliberately spoiling their games. Without ABA hi experience of these interactions will eventually ruin his mental health. He wants to be involved but doesn't know how to. Any non-ABA approach would further isolate and punish him rather than analyse and use his motivations to teach appropriate behaviours.

When I say most can do what I have done, I mean set up and manage a programme, not tutor themselves. I have done a bit, and my parenting always supports the programme but actually I admire parents than aba their own children. It is extremely tough.