email I meant message!

mum2fred Thanks for your email, but please don't get angry on my behalf, you'll need all your energy for your own battles.

This information actually isn't as bad as it sounds for us because it is the beginnings of a case for alternative intervention. It's bad news for the tax payer obviously, but then so is a lot of stuff that goes unchallenged.

I'm not shocked because I expected it, but I also expected it to be covered up more cleverly. It is a relief that their shortcomings are so obvious, and that therefore 'probably' haven't been challenged before otherwise their answers would have been better.

It could also mean that they haven't built strategies for denying ABA, because imo the best strategy would be to provide robust evidence to show that what they provide is effective, meets the needs of their children and is cost-effective.

Not saying it isn't going to be a long hard slog for us though.

that is a disgrace. an absolute disgrace.
were they even embarrassed when they told you that?

seriously. they need to get their priorities in order. spending your tax money on organising a 'feedback plan' as means of evidence?!?! wtf??

What a waste of your taxes. I'd be right pssed off if i was you. I AM right pssed off. That money, those wages that are going towards a project manager spending 6 months setting up a link on a website or a phone line or whatever it is... should be spent on your son!!

disgrace.

Yes moondog I'm going to write to the Head of Service stating what I believe I have been told today and ask her if she would like to clarify that I had understood correctly, or add anything.

Wondering about the IEP too. I'm sure I read somewhere that it should be reviewed more often than that.

There was some justification in only offering 1 hour (it's gone down ) a week. Apparently other Authorities offer more but only for a short period of time and then cease the service completely, whereas our service continues supporting ds all the way through school, even if just in the background.

Doesn't sound even vaguely plausable to me. Surely a child needs support for as long as they need support and if other authorities end the provision it is because they have been successful at the early intervention and the children no longer need it.

Not good enough and they know it.
You need written statements of what they say-ask for everything in writing.

Oh, and his progress will be measured via a termly IEP!

The Local Authority evidence for using their form of intervention is:

1) Word of mouth recommendations for their service by parents.

2) Piles of paper that say that it is effective but that haven't yet been collated into one place or document

3) Such a good service provision that they are launching their own feedback plan to get written comments from parents.

They sat in my living room and told me this!

Phew, - I guess I have nothing to worry about then !!!

lol. i KNEW i should have tried crystal healing...

Present it in a confident erudite manner
'You will of course be aware of Smith & Jones 2001 research which .........'.

They will be too scared to admit they don't so just sweep along with the discussion ,taking charge.

I don't have issue with parents presenting research to back up their wishes to an Educational or Health Authority though. If not, then they could find themselves in the position of funding reiki or crystal healing because a parent wanted it.

If you put together a coherent, civil and evidence based case, then chances are you will get what you want.

No Moondog I won't. I know the level of the playing field now.

I shall present them with some of the research that indicates empowering parents to help their children is one of the most effective interventions and one that takes pressure off their resources. (dunno why I need to present research though, - tis blimmin obvious, but they just don't seem to 'get' it).

By the way, DON'T EVER APOLOGISE AGAIN FOR ASKING QUESTIONS.

'Btw, I don't really know why they find the questions so hard. They are only roughly what moondog suggested.

If it was a company or service that I was buying in, these answers would be at the heart of what they do. They would be in their brochures, on their website etc. They would be used to reeling them off!'

Yes, indeed.

'<sign>, so if the battle itself wasn't enough, we also have to fight the perceptions of the service provders that we are directing our anger at the dx at them, rather than our anger at their p*ss poor delivery.'

And again. a rueful nod.The 'system' does indeed often dismiss parents in this way.(ie 'They are finding it hard to accept the diagnosis'.)It exonerates them from providing a better service as it puts all the blame at the parents' doorstep.

The whole thing is a complete and utter nightmare.

*also should be said that as we have been in the UK for forever [and are all proud dual citizens] it is unlikely that we are going to fulfll the 'residency' requirements of government benefits, so in all likelihood im going to be chasing and chasing nad chasing.... YAY. Cos i really need my life to more difficult than it is already. *

lol. probably.

but the thing that seems to be coming across is that Aus is sort of in awe of the UK and i have been told many times that the UK are ahead of Aus in terms of knowedge nad dx etc. etc. so it seems that getting my uk dx recognsed will be pretty straight-forward.

(which is sad cos a teeny part of me is hoping that they go 'Nonononono! NO! NOOOO! Your DS is not ASD! He is the most amazingly normal (albiet VERY quirky) and cute boy we have eer seen!!)

i suspect it all has something to do with a new govt in power, trying to in a few points here and there (becuase at the moment aus has dx rates of 1-2 in 1000..... which i think is safe to assume will be rising rapidly in the next few years.) the new funding as just announced a month or two back so its a GREAT time to be young and autistic! lol

Yeah sounds more simple. In that case, make blardy sure you have a concrete dx before you go.

I would expect that the government would make you jump through hoops that stall you for at least 6 years in that case.

Anyway, - that is good news really, because most of us can only get part funding, and that is after a few years of battling and with legal representative costs and private reports.

slight aside, but from what i understand from the australian system, a parent with a dx of asd under 6 is entitled to £6000 lump sum* per financial year (until dc turns 6)which they can spend as they like (on whatever therapies) if the provider of those therapies is one signed-off by the government. 3 of the 5 organisations sgned-off in my home city provide ABA.

*those with more severs situations are able to apply for addtional fundng

lots of problems with that system (it would probably only support 6 months full-time aba going on aus prices) BUT seems a hell of a lot simpler nad more trustnig of parents. this whole statementing business sounds lke pulling teeth.

<sigh> - obviously lol

<sign>, so if the battle itself wasn't enough, we also have to fight the perceptions of the service provders that we are directing our anger at the dx at them, rather than our anger at their p*ss poor delivery.

He told me to be as nice as I possibly can to anyone who helps too so that seems to fit with what you are saying.

It wasn't what I asked him for or expected, but I think it was useful.

"He sent me a few research articles on how mothers who get a diagnoses direct their emotions at people in authority"

I'm very aware of that perception now so I make an effort to be very positive and 'smilely happy' all the time and praise 'them' to the skies for all their efforts (even if they've done nothing). It's strangely empowering if nothing else. I feel as if deep down I am the patronising one. I don't have a problem 'accepting' the dx but that does not mean I accept any view of autism the professional is trying to push. Also I have made more progress this way - Vanity thy name is someone making a living out of autism !

btw, I don't really know why they find the questions so hard. They are only roughly what moondog suggested.

If it was a company or service that I was buying in, these answers would be at the heart of what they do. They would be in their brochures, on their website etc. They would be used to reeling them off!

Thank you mum2fred. Aren't we all amazing though. We are all trying to overcome our own upset, and at the same time trying to find a way of getting the best outcome for our lo at an extremely stressful time. You are working very hard yourself and your children are very lucky!

lou Very tempting

moondog I sent an email to an ex-colleague Ed Psych to see if he had any suggestions. He sent me a few research articles on how mothers who get a diagnoses direct their emotions at people in authority and that those who accept their child;s dx are more likely to be able to tune into them and give them a better outcome and that this should be a focus for intervention. I was a bit at first, but now realise that it gives me good evidence for instisting that they train me appropriately, and suggests a threat to them if they don't.

starlight i just wanted to say think you are doing an amazing job, DS (and DD) are very lucky to have you. Good luck x

Can you respond by saying "That's ok, I am willing to accept the remaining answers in writing prior to the meeting"

oh I know, Starlight. The whole thing is just a list of battles to be fought - it's a bit neverending at times <sigh>

I made a mistake.

I apologised for asking so many questions (there were 8)

The result is an email telling me that they'll answer some on the day but won't be able to answer them all in one session.

I won't be making that mistake again and will ask for a deadline for having them all answered.

silverfrog Thanks for that. I expect you are right. But it does create yet another battle.

surely stating that child must be under 3 at dx to get funding is a blanket policy? therefore illegal.

if they agree ABA can be of use as an intervention ()which they must, as they fund it when forced to do so) then they have to look at each case on an individual basis.

Okay, have contacted the local ABA group (the one that doesn't exist remember) and have been told that one of the criteria for agreeing funding is that the child is under 3 when diagnosed.

DS has his CDAC appointment where formal dx will be given, 6 weeks before his birthday (but six months earlier than original date before fuss was made).

How likely is it that the paed will stall us, by asking for another report or something to take us over the 3yrs mark, or are local authorities really not that organised or joined-up?

Prolly won't ask if the visit is logged as intervention. It doesn't matter to me what it is logged as. It is the outcome that is important. Can't believe I had to sign a form after the 'Working around the team' meeting to say they were all there. Next time I will add my comments too perhaps, and rate each attendee's contribution out of 10.

Good to meet on home ground.
You're in charge.

Yes, in all probability the visit will be logged as 'intervention'.
If you're feeling cheeky, ask them.

(But prudent to avoid going in all guns blazing.Trick is to always have incrementally more tricky cards to play up the sleeve.)

Good question

LOL at 'someone authoritative'.

Because it is in my home and my DH will be there too (and briefed) I think that this time it is better not to outnumber them and appear too confrontational atm. I think they will find the questions difficult enough and when/if they aren't able to give clear answers then I will follow up with a letter to their Head of Service for clarification.

The 'representative' will come at the next meeting perhaps. I don't feel intimidated by these two on their own atm. One is an excellent Advisory Teacher, the other is a bllshtting purse-strings holder who's voice wobbles when I ask direct questions.

I suspect (but hope to be proved wrong) that the meeting is a token visit to demonstrate to the top guy that we haven't been left 6 months alone with a child with autism, - and that meeting with us once in that period marks the beginning of the intervention

Oh-what course of action will they take if data does not not show what they offer to be an effective intervention for your child.

Excellent.
Take someone authoritative in (doesn't matter who) to take notes,and introduce them as 'my representative'.

You concentrate on the questions and let tham take notes silently.

Good news I think.

After refusing to see us before September and a very vague description of what support we are getting then, a support teacher and her manager are coming to see us next week to explain to us what they are able to provide and to give us a start date.

At first I was pleasantly surprised at the change of tune until my DH reminded me that I'd sent rather a strong letter to the top guy requesting a formal assessment on the basis that my DS' educational needs were not being met, with all the reports, recommendations etc attached.

I have been invited to submit questions by email before hand, so I think it is my opportunity to ask those questions Moondog suggested:

'who the Autism Advisory service is exactly

-what training they have
-how long it has been going
-what is their evidence base and
-where is their data demonstrating it to be an effective intervention
-how often it will happen'

Anyone have any other good questions?

Hmm, they're flailing already.
In that case, ask them for evidence that whetever 'approach' they are using with your son works.

ie
Baseline assessment
How are they measuring change and what change are they measuring?
Research evidence to back up what they are using

Written convos keep you in control.

Well done re the driving!

Hmm, they're flailing already.
In that case, ask them for evidence that whetever 'approach' they are using with your son works.

ie
Baseline assessment
How are they measuring change and what change are they measuring?
Research evidence to back up what they are using

Written convos keep you in control.

Well done re the driving!

Yes good point. I'll hold off sending the MP one. Just stick with HoAutism and Dir of Ed (statement request plus background).

I'm going to need to send one to the Cheif Exec sure enough though because I've been warned that the answer to:

'using evidence-based practise'

is that they don't because it is irrelevant because every child is different and so what works for one won't necessarily work for another

I haven't had this conversation yet, and I know that even if what they say is true, it is still no reason to not have a rationale for their approach that is supported with research, - but I might be a little bit stuck all the same. I expect a 'written' conversation might be better.

Have driving lesson no.2 this afternoon. Very scary!

Coding your letters is a good idea but i would not be firing them off to big guns yet.
You need to assume that people will be reasonable with you if you present your case in a civilised and coherent manner and also not get people's backs up straight away.

Always have a few tricks up your sleeve.

Okay, 3 out of 4 letters completed. MP, Dir of Ed, Head of Autism. Next Chief Exec.

Do you think I should put my own reference code? Something like:

HoA/Letter1

To a)show I am organised, and b)show I'm intending to keep writing until things improve.

It's tempting, but I think it's probably better to not. I don't want them to have all guns out on the defensive just yet. I need to win this through small progressive battles, rather than declare war at the outset which might delay support in the run up to the last battle.

Sorry, think I'm just talking aloud now - lol

Wish I lived in Hampshire, with much better support and affluent active parents that make things happen

MIL lives there. Perhaps we could do a house swap for a bit given that my 2 are preschool ages.

Good girl!
Fighting talk-I like it.

Thanks so much Moondog. That actually fits my way of thinking anyway so I'm always going to be niggled if I get anything other than evidence based practice, or a explanation of how they will evaluate their intervention, but it might have taken me a while to figure out what was niggling me or whether I even have a right to ask for it.

Right, - 2 children having afternoon naps, one mummy writing letters.

I might make it a personal policy that at the beginning of every meeting and phonecall, I will insist that no-one wastes time talking about resources or budgets when we should be talking about meeting the needs of my child and nothing else.

Wrt crying in meetings. I'm toughening I think. I just managed my first driving lesson in 10 years yesterday without falling apart and I have a driving phobia. I'm shocked that I drove all the way home and across 3 roundabouts . So you see, there's no stopping me

Yes, you have the right idea.Your remit (and their actually) is to get evidence based data driven provision for your child.If they can't come up with the goods, then thry have a legal obligation to find and pay someone who can.

'Evidence based practice' is a very handy phrase.It's what everyone is urged to do and barely noone does.
Whatever they offer, ask for evidence, data and research citations.

Then sit back and watch them panic.

Ah, very good point.

I need to stay focussed. Not allow them to lose me in the confusion. Not allow them to add to my emotional burden using cheap shots such as other peoples children or their own frustrations at their own workloads.

I can't take on the world can I? So I'll concentrate trying to break down the relevant barriers for my ds, one at a time with a targetted and planned approach. I'll confort myself with the idea that others can follow in my wake

pmsl, - now I sound like a Local Authority employee

I wouldn't waste too much time worrying about overall plans.Concentrate on what is right for your child. Provide the evidence and kick up enough fuss and you will get it.

I couldn't give two hoots about other people's budgets.That's their problem, not mine.
Get my drift?

Really? That can be true about Statements? That's crazy!

Parent Partnership told me that the problem with 0-5 provision is that it used to be the remit of Health, but with the EY national curriculum, health are passing the buck.

However, Education will only invest if it is to avoid costs in it's budget when it becomes responsible for funding within the education of said 0-5yr old when they are at school, so therefore early intervention in pre-school years is a kind of preventative luxury rather than a mandatory expenditure. (I think I got this right)

So all in all, integrated children's services at pre-school level seems to mean sharing the responsibility for failing children, and the inability for a parent to hold any one person or department to account.

Thanks moondog for suggesting I record the details of that conversation at Opps. She was actually saying it to be helpful with a gentle nudge to get on with writing letters etc. I feel.

Good on you for making that call though!

Prob. true re turning it down.Just ignore and resubmit.

Re this bit

'I explained to a teacher in the Opportunity class (which I had to muscle my way into) that we needed a form of intervention that can be measured and she told me that I won't get that and it doesn't work that way in my authority. How can they ever justify it working any other way?'

I'd be making a verbatim note of that convo as well as time, date and name of teacher.May come in very handy.

Hiya,

I called them today, and they were good at explaining to me how the system worked and how the people who are supposed to be helping me are themselves fighting for more support/funding . They are going to get on their case about parental training

I have also written to the Top guy in Education to request an assessment for a statement with details and evidence of referals and recommendations that have been ignored. I will be sending closly matched letters to the Chief Exec, my MP, and any random people I can find on the internet that might be able to help.

I have been told a few times by parents(but not sure HOW this can be true) that there is an unwritten policy of turning down the first application for an assessment!?

I explained to a teacher in the Opportunity class (which I had to muscle my way into) that we needed a form of intervention that can be measured and she told me that I won't get that and it doesn't work that way in my authority. How can they ever justify it working any other way?

I think Autism provision in my authority must be falling apart. I am now starting to meet other mums with children with autism and they seem to accept things with a shrug and a 'what can you do?' attitude when faced with things like year long waiting lists. Are they serious? Have they just been beaten down? Have they been fed lies or is it just what happens when you live in a poor socioeconomic area? Am I really in the minority in thinking this is outrageous, and is this because I am being unreasonable or 'pushy' as my dad helpfully suggested?

Grrrrrrrrrrr

Got your email and replied.

Please, make that call.No excuses.
Time is of the essence.
Get organised!

Thank you. I've got the details of the Parent Partnership but not contacted them yet. It seems like an age, but actually, my ds has only had a 'parental' dx for six weeks and with 2 young children it is hard to find time where you are guaranteed a quiet slot to make phone calls.

Hopefully I'll solve that by recruiting one or two students shortly just to play with my children.

Btw moondog I hope you don't mind but I have emailed you again with something you might find interesting if you haven't already come across it. It's a bit scary for me, but forewarned is forearmed!?

Star, if you worry about getting emotional, write this down and take somoene to read it out and/or present your case.
A confident friend or relative or someone from SNAP/Parent Partnership, as they offer this serice.

That's very depressing moondog. But I know you are right.

sphil Feel free. I should have used it myself at the TAC meeing. Instead I said something silly like I don't want 'watery wishy-washy support', but it was my first meeting and I was trying not to cry

Hope you don't mind - have just copied down that quote to use in potentially difficult meeting with SALT at school tomorrow. Sums up my frustrations with the approach to DS2's speech development perfectly!

'I know that I want a systematic approach, with clear aims and objectives with measured outcomes and impact, not a random distribution of isolated 'support hours' given by loads of different people with a range of training styles, levels and personal preferences. '

Summed up beautifully Star.
What you don't want is what you will get.
I virtually guarantee it and however 'good' individuals are, unless thry work together it means notihng.

Tbh, that (as well as a decent no of hours, although I realise hours alone aren't of any benefit) is why it is beginning to appeal.

I know that I want a systematic approach, with clear aims and objectives with measured outcomes and impact, not a random distribution of isolated 'support hours' given by loads of different people with a range of training styles, levels and personal preferences.

It's this methodology more than the content that appeals.

I think my DH is getting a feel for ABA (as you mentioned) because he is also a systems guy and he went to Manchester Grammer, so is biased towards monkey-training teaching stlyes

"My DH (who didn't do the PECS training) has developed his own systematic way of spending quality time with ds for 1-2 hours every single night after work for the last month and the progress has been amazing"

<doffs hat>

There are some really good professionals and services out there, no doubt about that and kids who come on really well.What matters is that the child in question learns new skills.That's all.

ABA is not for everyone and some severely autistic kids do not respond well to it at all, althoguh that is usually because they haven't been given access to it early enough.
Anyone who sells it to you as a 'cure' is a charlatan.

It is also quite right that an Education Authority does not agree to funding every therapy going (that a parent may want on a whim) with tax payers' money. You have to do yuor research and state your case and if you are prepared to do that, you usually get end resukts in terms of them seeing it from your viewpoint.

My biggest concern with SN is that there are often too many peopel involved, most of whom do not work together properly. I have pruned back the people involved with my dd to the bare minimum. The ones I don;t want are people who I know have nothing to offer me so what is the point of meetings and appts. and paperwork for the skae of it.

One of the great strengths of ABA is that it is underpinned by a clear framework of principles to which everyone who is properly qqualified, adheres.

I have thought about ABA too but it seems as ds1 is improving in some areas the response I get is oh isn't he doing well the provision must be working. So if dc does improve then it gives case not to go down the more expensive ABA route and stay with the sticking plaster method. Perhaps that why they advocate early intervention knowing some dc will have less traits as time goes on and then can claim their methods are working. And then once your are in the system it will be hard to get out of it and take a different route.

It's hard though, because a fantastic childrens centre we go to have absolutely fallen over themselves to give us 'their' hours, and been very kind so it is hard to complain that it isn't good enough, but it isn't.

What it is is an acceptance that the essential services that we should be getting aren't going to deliver and an attemp at a bit of sticky plaster.

Multi-agency working so far seems to be about getting lots of agencies together to fill in little holes and stock up hour 'points' irrelevant of need to give the illusion of support. And, what makes it hard is that some of these hole-fillers are really trying, but it's a farce.

Indeed.
Don't think of it as a personal thing, because it isn't.

I didn't mean it nastily - and even if, as employees, people think 'we'd better not mess her around', they won't dislike you personally, and will secretly be thinking 'well done'. I feel it in my job - there's things I have to do that I don't agree with, so am secretly pleased when parents get one over on 'the system'.

Thanks, - the sad thing is, I don't want anyone to regret knowing me, and I don't want to score cheap points or throw my weight about for the sake of it. I JUST want to get a half decent service for my ds.

Sounds like 'they' will soon be regretting taking you on - I will be hoping that you win!

Well, just hang in there and keep going.

Slow and steady wins the race

Yes Moondog, I get your drift. For someone who lives a chaotic lifestyle I am quite methodical and have recorded the details of every single interaction with the Local Authority since the first, - just in case....

Many times 'they' have told me that their policy comes before children's needs, one way or another, and once someone told me it was a numbers game . I have their names and the details of the call.

Oh, and I've begun challenging the 'they' whenever it is used as an excuse 'i.e. they can't agree to that' or 'The local authority won't fund that'.

WHO can't/won't.??

But, I know I'm still at the very bottom of the mountain

Have a nice evening together.
Keeping my fingers crossed for you.

My goodness am I up for the challenge. I've lost my lifetime phobia of driving and sent off for my provisional license, because I can fight for support but it's not much good if I can't get to it is it?

I've had 2 45 mins conversatinos with an imaginary (doesn't exist according to Autism Advisory Service) organisation in my County that have supplied me with loads numbers of people that could help an ABA case.

I'm currently struggling with getting onto some kind of parent training though (although I must admit the longer it takes, the less relevant this issue will be). I'm planning on phoning another county and asking if I can go on theirs but I already know the answer, - I suppose I'm hoping that they will be shocked at my story and give me some cannon balls to fire.

Anyway, - It is looking like DH and I may get a little bit of evening tonight so I best hide make myself available

Do FoI request asking what ABA programmes they have supported.
Make a note of when and where the 'We do not fund ABA' line was given.
Armed with information on what they have funded in the past, this will be an excellent hand grenade to throw into a tricky meeting in the future.

Something on the lines of

'May I ask why on 20/4/08 at 3:15 pm in the Social Services meeting room, Mr Jones stated that the council do not fund ABA?

However I have here (wave documnet) a letter sent to me in response ot an FoI request, detailing 4 ABA home programmes that you have funded in the last 4 years.

Can you explain this?'

Get my drift?

Probably, yes!
This is why organisation is the key.

It is not easy to get anything above bog standard stuff on offer. (I know,I have been through it all as a parent and if it is hard for me, as part of the 'system', it is 100 times harder for everyone else.)

But this is our duty as parents and that is that. Self pity will get us nowhere so start limbeirng up for the challenge now and you will get there.

Oh Moondog I have been so grateful for your posts. I really have. It doesn't do me any harm at all to be challenged on here either as it gives me a dress-rehursal for real life. Those b*ggers aren't going to be anywhere near as kind as you and I know I need to be completely sorted in my head and justify everything.

Thanks for that list of questions to ask. At this rate I'll be writing to them a letter a day. Surely it would just be easier to give us a live-in autism trained nanny, and a loft conversion for her to live in

Yes, and please remember, I'm not trying to tell you what you do.Just hope some of my observations and knowledge might help you a bit.

Sounds great. Your dh sounds like a trooper.Nothing can ever be better for a child than loving committed parents, whatever the therapy. His tailor made programme sounds very ABA.

Interestingly, some ABA fold curl their lips at PECS because it does not demand vocalisations from the off (although we very much want them to come). SALTs on the other hand like it (even if they think they don't liek ABA) because it works on motivation to communbicate and doesn't focus solely on speech.

Moondog My DH (who didn't do the PECS training) has developed his own systematic way of spending quality time with ds for 1-2 hours every single night after work for the last month and the progress has been amazing. I don't want to undermine him, because our family are so lucky to have him and I think it is important that he builds his confidence in what HE can do for his ds before I trample all over their 'arrangement' with little laminated cards.

In the meantime, I am able to think thoroughly about the pictures that will be the most helpful and I am busy making them.

Also I need to think a little bit about how to introduce it because my dh has already got ds to say, with a prompt of 'what do you want?' - 'I want ham', or 'I want ball' etc. and this has been very recent. I know however, that with PECS I have to start at the beginning.

Does that explain a bit?

You need to ask all these questions and get answers.
Be warned, a home based ABA programme wil lturn your life upside down. Everything else will have to come second and you will have armies of relative strangers trooping in and out and very little privacy.

Perfectly reasonable to ask for evaluation of ABA programmes to date.Cite the Freedom of Information act when asking for info.

Having youngsters to be therapists not a problem-they've generally got energy and stamina but be prepared for hangovers, lovers tiffs, broken alarm clocks and so on.

Don't know your child obviously but puzzled as to why you don't want to use PECS 'yet'.

Oh and we are currently recruiting lots of students from a local colledge for a couple of hours a week each 'respite' over the summer hols so I can do the research needed to set up a programme and make a case. This way we can have a pot of students to possibly pick from who know our family when we start the programme. They are quite young though 16-19. Do you think this is a problem?

Point taken about changing the way we do things. I'm quite certain that we'll not get away with our current lifestyle with even the loosest of ABA programmes, and my DH and I have written a rough structure for the week. Not stuck to it of course , but every week we try again.

Hi Moondog I've done the PECS training and I am planning to use it, but just not yet (a variety of reasons to do with progress already made and not adding to confusion)

Do you think it appropriate to request their evaluation of ABA programmes they have already funded? I am assuming they will have had to do this in order to justify (or not) funding.

I'll ask those other questions you suggest but tbh I'm still stuck at what the process is. I.e. what they are coming for 1.5 hours a week TO DO, where it is supposed to be going and on what basis they will decide whether to increase or decrease support and in what timeframe these decisions will be made.

We have also been told that we can attend the next 2-evening training but that they have no idea when that will be.

Crossposted.
Star, I think you have to get your head around the fact that you need to change some things for your child too, and not just everyone else to change what they do.

Structure, of some sort is, in my clinical experience, really useful.

Ask (in writing)

who the Autism Advisory service is exactly

-what training they have
-how long it has been going
-what is their evidence base and
-where is their data demonstrating it to be an effective intervention
-how often it will happen

Must stress that notihngwrong with PECS done properly though (which it rarely is) as it is a marriage of SALT and ABA which is a great mix. I love PECS.

Similarly visual support can be very effective too.

I don't know what they plan to do. I hope it isn't pecs because I know they are not trained (I am btw and so I know it isn't appropriate for my ds), - and we don't have a lifestyle that will work well with a visual timetable (ie. often I don't know where I am going when I set out), so I really hope it isn' either of those things otherwise their support is even more useless.

Interesting about the tribunal idea. We are thinking about possibly recruiting for ABA over the autumn term and starting sometime before Jan. At the TAC, they gave a blanket 'We do not support or fund ABA' but I know they were lying through their teeth.

Maybe if they have ended up at tribunal enough, your LA might start to give in to ABA before spending all the money on lawyers. I found that once I'd paid for it myself for a year, and therefore had evidence of its effectiveness, they did agree to part-fund, but I know that every LA is different. I wonder what the autism advisory service will do - probably PECs or visual timetable stuff?

We don't get portage, it is from the autism advisory service.

The more I think about it the more moved I am to get a home-based programme underway. No-one in our authority has got la funding without going to tribunal though.

Yes it is a lot better than that Starlight. That is probably portage, right? ABA tutors will adapt to the kids' needs and find a way of "getting through" to them so that they can learn new skills. I can't recommend it highly enough!

LA offering is 1.5 hours of autism specific homebased help.

Now, even if you don't 100% believe in ABA, it's got to be better than THAT right? ANd it is possible to get tutors that are more liberal and flexible right?