What would you call a parent support group that wanted to focus on outcomes and accountability?

[StarlightMcKenzie]

Any ideas?

Reading all this with interest. Silver, I like your holes springing up all over the dam reference, as the LAs across UK try to have enough fingers to stem the ABA tide! There are now over 250 kids in ABA schools in the UK. An estimated 1000 families are doing ABA, but I think that is low as it only counts families using certified supervisors/consultants (and there are many, many families, including mine and all my pals', who are using supervisors with years of field experience but no BACB).

Starlight - your LA sounds like worst in country, could you move?! I wonder if an advocate like Fiona Slomovic (fabulous, who I used) could look over their anti-ABA stuff and appeal against them in a test case for an unlawful "blanket" policy.

My LA is not perfect, and I had a fight on my hands, but it has funded a lot of home ABA and also out-of-borough ABA schools. They do not like it, but they do listen and see the proof. I think they know secretly that their generic, woeful special school is no good for autism.

sickof, I hope and suspect that my LA will therefore be the first to fall, and fall the hardest.

For some reason, I'm less worried about my ds after attending the conference. My consciousness and confidence has taken a shift and I think I know how to win them round, and if not, I certainly know how to compensate.

I can't put my ideas here unfortunately because of that dangerous distructive MNer that snoops and reports but I am happy to share via PM.

Sickof - can I PM you about Fiona? I'd like some advice.

I gotta disappear for a few days but I'll answer your PM Sickof. I know of something else that is just getting off the ground that you might be interested in, in terms of parent empowerment etc.

Sure, Cornwallia, and look forward to hearing from you Starlight, hope you are going somewhere nice.

Are we only talking about autism here, or other disabilities?

Very interesting thread. I've worked at and been a parent gov at a special pre school up to and including reception age and I've seen how they really struggled to implement the montessori child led learning through play model with their children. It was particularly awful for those children with autism, who just delighted in wallowing in their stims. Those children 'on their own agenda' learnt very little. Conversely it worked really well for the more social children. The school eventually abandoned it for those children with autism and went back to a much more structured, adult led system. (But not ABA, obviously!) This was quite a few years before the new EYFS came into existence.

I later worked in a MS reception class which had embraced child led learning through play for 3/4 of its sessions. Again it was really successful for about 3/4 of the children. The child I supported just 'chose' to play on the computer all the time, on a really crap, repetitive 'educational' game. When I tried to encourage him to try anything different he was really reluctant, and I felt I had no mandate to insist. Other children had their favourite activities and spent most of their time monopolising them. The more timid or vulnerable children had no 'choice' but what activities were left.

It is too extreme IMO. It's a one size fits all experiment that just doesn't work for many children. My DS would have gained nothing from it. Any child with SEN in a MS school would be in serious trouble, either left out completely or dominating aggressively. My DS was much better off in a rigid, pushy academic school with very rigid structure (which was no fun for most DC) even in Reception. He actually hates Golden Time or party days. He had a split placement for his whole reception year, mornings at school, pms at the special school. It actually worked really well! Strict structure, jolly phonics etc in the am, old fashioned ASD SS using Pecs, getting OT and Hanen Salt, sensory food play, music therapy, RDA, swimming lessons, forest school, circle time, etc in the pms.

ABA sounds really good, but I just haven't come across it. I can see it would have worked really well for some of the dc who didn't seem to progress much at the SS. My DS turned out to be quite HF, so I do wonder if he'd have turned out ok with any sort of early intervention that improved his communication and hence behaviour. He certainly had a fantastic time at the SS!

Oops, getting my Italian educational methods mixed up, Reggio Emilia approach, not Montessori. Better than Montessori IMO but still useless for ASD!

Though you might like the 'parents are the children's first teachers' philosophy and that parents are actively encouraged to stay and volunteer regularly in the classroom to share good practice.

Interesting point BaleliteBelle

I like measure up. I also agree aba should concentrate on it's positives and stop defending it's history or being negative about other approaches. The evidence of modern fluid aba is there now. My Dh and I have an idea which might link in which is a sort of Dr foster for sen. If you remember dr foster was a website that scored hospitals and drs on basis of data eg from regulators and from patient experiences. It had a big impact in terms of individual surgeons and hospitals to have to account for outcomes. through legislation and foi requests it is becoming increasingly possible to gather data about sen outcomes and spending patterns and my Dh has started graphing this so we can see for eg where the LA is compared to others and how many statements it issues and the trend. This has allowed us to challenge the la about their performance and some plain inaccuracies eg inappropriate requests for statements were said to be out of control so the sen budget was spiralling when the vast majority of requests were granted so were not inappropriate. He has started a blog and thinks this sort of data is the way forward. Any parent group should also push for new kinds of data to be collected eg whether children go on to employment, college, indep living and for salt whether the children they work with gain speech and how long this takes. This is where aba will win the argument by showing outcomes eg behaviour, indep, speech gained etc is outstripping the eclectic model. I also think a database of horror stories in one place is a good thing as I am fed off being told mistakes in my case were some kind of one off. Star hope you are having a break which is relaxing. I am interested in helping and may be able to get Dh to do some web stuff to help. It would be good to at least gather some stories on a website to coincide with the sen green paper / White paper. I went to an interesting talk by lawyers who argued the current system and guidance if properly implemented by LAs is fine and the system is not broken but needs fine tuning / following. There is already asd guidance for 15 hours per week which can be home programme / aba. I don't think we need any new guidance or legislation to achieve what we want just all the past promises to be acted on.

Here, here Agnes - I agree wholeheartedly with your last sentence.

I would also be interested in helping.

Have a lovely break Star.

Me too.
As I say repeatedly, an ABA model of education and communication (althoguh I don't actually differentiate between the two and think anyone who deos is barking) fits in beautifully with all that pedagogy is expected to be in this day and age.

SMART

Moondog -Trouble is, people are in shock when their kids are flagged up as having problems and the clock is ticking. There are so many parents i want to scream 'WAKE UUUUUUUP!!!!' at, but I can't. It's not my job to do that. - I wish it was your job to wake them up. Just looking back at my reports, I can see that an Outreach Teacher was trying to tell me that the school was not doing anything other than childminding my ds but I was 'in shock' and also had a lot of other things on at that time. I feel sick whenever I think of what I could have done earlier for ds.

Agnes - that data sounds fantastic.

Star - think that this is a good idea. Agree that it need not be ABA-led as parents using other interventions would be interested in outcomes and accountability too.

Bakelite Personally I would like all disabilities. The issue is accountability, not disability iyswim.

And yes. It shouldn't be about ABA. Just accountability and outcomes. For many that will lead to ABA type approaches, but not necessarily all.

Just snatching a few mins so will catch up properly and see where we can go, and who is interested in a few days.

One of the things I'd like to see for ALL SEN children are the following public measures published as publicly as the school league tables.

Per 1000 pupils % of statements applied for by parent
Per 1000 pupils % of statements applied for by school
% of notes in lieu issued
% of statements issued at first request
% of appeals against refusal to assess.

% of final statements appealed against
% of final statements taken to tribunal
Ratio of win:lose for each lea at Tribunal.

If these figures were published annually in the times as the league tables are, parents could draw their own conclusions. The tables should rank the leas by the lowest numbers of tribunals ; ) & statements issued at first request.

Like it, bochead.

Some of this info is becoming available
LAs now have to publish more info and some is on DFE website
here for eg and SENDIST have some old data on theirs but you can FOI them for more recent data. Thats what my DH has started to do for our LA but we can't do the whole country! But what I am saying is more of this info is in the public domain or we can ask for it - there is a site which you can make FOI requests through the site so the response is published publicly and you can see if other people have FOI your LA on SEN issues: www.whatdotheyknow.com

Although some peoples requests are quite bonkers!

Using data will start to mean that parents can counter the LA propaganda eg ours talked up the few positive figures to come out of the above data - fewer exclusions and got a fab write up in the local paper but no-one investigated the rest of the data which showed they were bottom in the country for SEN outcomes at keystage 2. Honestly LAs have no shame at all.

LAs also (thanks to Eric Pickles) have to publish all expenditure over £500 here so you can look at their published accounts and see how much each LA are spending on out of area placements for eg. Also you can see how much is being spent for eg on respite care for adults the sums are mind boggling when compared to what is spent on children. You can also see which SEN training providers they use and pay for.

So I think data that LAs now have to collect and publish and pushing to get more collected and published will start to shift the balance of power towards parents. Now I know my LA achieves so badly compared to others it means I can sit in meetings and feel confident when they tell me how fantastic their mainstream schools are for ASD and how they are all ASD experts now that their mainstream one size fits all approach is ideological crap because clearly putting more children in mainstream than other LAs is not having the desired effect of improving outcomes. In fact after 10 years of this policy they are bottom of the league. Before I knew they were talking crap but now I can prove it.

StarlightMcKenzie
"Just accountability and outcomes."

you are right there, what is required is to keep all the diagnostic professionals medical, and out of the influence of politicians local and national. For all program recommendations to be based on international peer reviewed research, and not the whims of a remedial program provider, whose main aim is to sell their program, which can sometimes be the best option but not always.

When i first started to research APD back in 1999, one particular program was marketed as the cure for APD, and appeared to have all the research support. But it turns out that some ofd the less supportive research results had been omitted from the published research findings by the program developers, and it took years to break through the law suites to get the the truth. The program is still available, and cvan help some who have APD, but not all and at over £2000 it is an expensive risk to find out that it does not work for your child.

So you need to make the program providers accountable so that thye have to stipulate scientifically under laboratory conditions how their program worrks. Which groups of children ir can help, which groups of children i will not be able to help, and to which groups of children it may actually cause harm (which can happen, if the parents and child expect a good result form the program and it proves not to provide any support or help at all)

'program providers accountable '

Yes absolutely. LAs as well as private providers. And schools. Half of what they do is believed by the teachers to be based on good pedagogical principals but most of it is just rubbish.

Agnes I am very VERY interested in the work you have been doing already on your LA and think your ideas are excellent. A central database with templates perhaps for parents to send to a few LA's each with a few choice questions and poplulate it as regularly as parents can do it. Number of appeals as a percentage of LA population would be a handy figure, and comparing LAs to their statistical neighbours too would be helpful.

Whether there is a BCAB member of staff in their authority too, and whether they even keep data on their tribunal costs (ours don't)

A collection of perhaps anon stories alongside perhaps as these stories are uncollected and unheard. Not sure what can be done with them, but they will be the qualitative aspect to whether things are improving or getting worse, and possibly an ocassional humanistic lobbying or publicity tool.

Bochead Those figures should be easy enough to get, but no one person can do it all. I suppose initially it doesn't matter. Starting with say, 20 authorities might be a good enough first step.

I would also quite like a place to publish letters from local authority personnel. I have a few choice letters and whilst I think it is reasonable to anon the families, I think as public servants it is also reasonable to have the names of the LA and the professional available and on view. That might be an effective way of stopping all the bullsh*t, if they have to write to a potential nation rather than a private family. Providing the letters do exist as proof I don't see any issues with liability.

Great ideas here. Perhaps a bit of mumsnet backing to launch a campaign/website? Or contact with a friendly, sympathetic national journo?

An SEN LEA league table might be of interest to the Telegragph? That's the most anti- local authority, pro parent national Newspaper right now. Suggesting it in terms of money wasted by LEA's on tribunal expenses rather than doing their job might be the way to go, esp with PipinJo's figures on whole of life care costs to the tax payer to back it up. The Telegragph also has enough "gravitas" for the less highbrow papers to pick it up.

The Guardian should be avoided at all costs as that's the most "maintain the status quo" of all the nationals.

Ooooh, got to disagree with you on the Guardian bochead. There are some very good campaigning education journalists there who have picked up some very difficult topics on SEN over the years. They would not be adverse to questioning the way LAs abuse their power.

They do however want to maintain a decent state school system but it is a different think altogether to advocate for this against proposals to dismantle of state education to benefit middle class voices clamouring for Academies, faith schools and other initiatives which will lead to increasing levels of selection.

Just my opinion but I read it every day and I live in a town of Torygraph 11+ maniacs!!