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Here are some suggested organisations that offer expert advice on SN.

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

(130 Posts)
StarlightMcKenzie Thu 21-Apr-11 13:45:19

Any ideas?

StarlightMcKenzie Thu 21-Apr-11 13:49:36

Accountability to Parents in Education?

APE? (God, I do not know of a single teacher that wouldn't HATE that one)

Parents for Accountability of Provision (PAP)

Parents for Outcomes and Accountability of Provision (POAP) - would sound Godly?

Maybe get rid of the whole 'parent' thing as clearly we're emotional and deluded.

How about Children for Outcomes and Accountability of Provision (COAP)?

bochead Thu 21-Apr-11 13:49:44

Sensible Parenting?

Common Sense Carers?

Measure Up?

A group like this would be a dream come true. One of my pet hates re the current system is the utter lack of accountability for a whole raft of professionals from Cahms to schools to social services for the utter twaddle they peddle.

StarlightMcKenzie Thu 21-Apr-11 13:50:28

Measure Up?

Hmmmmmmm <thinking>

StarlightMcKenzie Thu 21-Apr-11 13:52:29

I was thinking of a central place to share experiences and stories and then go public with them, or at least make them available for use.

willowthecat Thu 21-Apr-11 13:54:44

Parents Against Twaddle PAT

Educational Provision Accountability Campaign EPAC

StarlightMcKenzie Thu 21-Apr-11 13:56:42

I'm liking 'Measure Up' to be honest. Given that the biggest problem is that nothing is ever blardy measured!

sickofsocalledexperts Thu 21-Apr-11 13:59:32

I think it would have to have a more plain English title Star - I think that we mums in the trenches on this stuff forget that 95% of the world don't know what "provision" or "EIBI" or " accountablity/outcomes" mean.

And when we use phrases like that, which they don't understand, it puts a distance and an antagonism between us and the non-ABA world.

Maybe something like Every Autistic Child Aiming High (but that too similar to Ambitious about Autism)

Or Every Autistic Child a Reader

Or "No Second best for SEN"

What I object to is the lack of effort in basic academics, as if there's no point as "those wee kiddies are better off learning how to butter bread".

StarlightMcKenzie Thu 21-Apr-11 14:02:06

Hmm. I do se what you mean. But I hate 'campaign' titles. They sound like another government initiative platitude.

Isn't 'measure up' plain english. I mean, there is no need to 'get' the real meaning. It could just look like an instruction to pull your socks up iyswim.

StarlightMcKenzie Thu 21-Apr-11 14:06:08

But God, wouldn't it be lovely to just regularly 'collect' FOI requests in a coordinated way. Graph them.

Wouldn't it be lovely to 'collect' quotes, and dodgy written letters to parents.

Wouldn't it be great to create a window into our world for MPs, newspapers and adademics?

sickofsocalledexperts Thu 21-Apr-11 14:06:13

Yes Measure Up is good, but it would need a lot of explaining to link it to SN/autistic kids.

A petition from us mums is a great idea: we would just need signatures and maybe some case studies, and send it to Sarah Teather the minister for disablities.

I have written to her asking for a wholesale review of the inadequate education provided for our growing population of autistic children, but of course I'm just one letter.

If we could get 500 signatures/stories?

Wonder how many ABAers are on Mumsnet?

I think the new ABA Associaton would definitely help on all this, as it will become a real focus for the profession.

StarlightMcKenzie Thu 21-Apr-11 14:08:52

Yes, I think the ABA Association could/should help.

I know what you mean about the title not reflecting properly the 'campaign', but I suppose I don't necessarily see the point in restricting ourselves to SN (certainly not only dx SN) or ASD. More, for any parent that has to receive services/provision for whatever reason.

StarlightMcKenzie Thu 21-Apr-11 14:12:02

Also, the ABA Association isn't going to the the client group. It will be an organisation seen as campaining for the interests of the service provider, not necessarily the children iyswim.

sickofsocalledexperts Thu 21-Apr-11 14:18:02

Actually I am going to be making sure the ABA Association has a really strong consumer voice too, and am already making a right pita of myself about this. We (or our kids) are the largest group of customers of the BA profession, after all.

A campaign that is too wide will probably end up falling between two stools, but am no expert. High standards in education are massively on Michael Gove's agenda already (whatever your politics) but no-one, absolutely no-one, gives a * about high standards in SEN education. That, to me, is the real battle.

StarlightMcKenzie Thu 21-Apr-11 14:20:50

Okay.....but.......It's the same blardy thing!!!!!

(sorry, absolutely NOT swearing at you). Really appreciate you coming here to help me think about this.

I suppose I just think that people are not interested and pretty sick of parents of children with disabilities. They don't, quite frankly, care about them. Also, the BA approach is that disability is irrelevant. It is behaviour presented, which actually, could apply to anyone in the population.

sickofsocalledexperts Thu 21-Apr-11 14:28:50

You are right, BA is certainly much broader than autism. But, to my mind, it is a national scandal that there are 130,000 autistic kids in the UK and only 1 in 1000 of them have access to the best-researched intervention, which could change their lives.

Imagine if there was a form of childhood cancer , and only in the US could you get the best intervention , but over here you get something that's just a placebo. There would be headlines in the Daily Mail and an outcry.

That's the bit that makes me mad, and I think with the speaker of the house John Bercow having an autistic kid (and attending the launch of Ambitious About Autism) there is the hint of a growing interest.

A pal of mine just came back from Florida and said that over there in the US, lobbying on autism is just so much more visible than over here. Barack Obama even mentioned autism plans in his electioneering ffs!

That's where I want to get to in the Uk.

I could weep for every single autistic kid who may now never speak, or read, or write, due to the crappy TEACCH/eclectic methodology.

Anyway, that's what motivates me.

My NF daughter has been given enough that she will make it through even our currently mediocre "normal" education system; not so my son.

sickofsocalledexperts Thu 21-Apr-11 14:29:49

sorry, that should have said 1 in 100 have access to ABA

StarlightMcKenzie Thu 21-Apr-11 14:44:06

Yes, I totally agree. But the problem is, arguing for ABA for children with Autism is problematic because of, not least, organisations like the NAS.

Parents don't need ABA, they need effective, data-drive, accountable, evidence-based practise.

You and I might see that as the same thing, but one is more 'sensible' to be asking for iyswim.

sickofsocalledexperts Thu 21-Apr-11 14:52:20

I see what you mean, but I think that - without the structure of ABA or VB - there is absolutely no hope of our mediocre SEN staff getting their heads round evidence-based practice. They just couldn't be arsed, in truth! At least with VB there is a nice simple VB-Mapp book which even they could get to grips with (and actually it's not so different from the P scales, so it wouldn't frighten them off).And I am an optimist - maybe we can change the image of ABA over here, like they did in the US?

I think a lot of people glaze over when they hear phrases like "evidence-based practice", as it sounds like HARD WORK. And part of the "art of the possible" is making the state see that ABA is within their reach, that it does not mean every single SEN teacher has to take a PhD in some complicated science.

God, if we could just get some very basic behavioural principles into some of our (woeful) autism schools and mainstream units. That alone, I reckon, would double the chances of many autistic kids.

Good debate though, I think we may be coming at it from slightly different points of view, but am enjoying it.

StarlightMcKenzie Thu 21-Apr-11 15:00:51

For sure, but it is how we get it in in the first place. I see challenge of the current system as the basis. Show up the weaknesses rather than try to sell a solution to people who won't acknowledge there is a problem.

People are only active when they are uncomfortable. You usually only change job when you are dissatisfied with your current one. You tend to seek out the solution of food when you are hungry. These are the basic principles of behaviour. You need to remove these people's reinforcers and put them out of reach. The grateful, satisfied parents need to disappear as does the ability to implement provision without thorough, documented justification.

silverfrog Thu 21-Apr-11 15:02:20

hmmm - interesting.

fwiw - I like "Measure Up", but agree it wuold need some expalining - that would come with the (hopefully inevitable) publicity and promo, though?

I think that using phrases like "evidence-baed practice" muddies the waters (I know it doens't, in reality, but bear with me).

I agree with sickof - having somehting nice and simple like ABLLS, VB-MAPP, the one I just fille din for dd1 (can't remeber it, sorry - HELP, maybe?) and a host of others is invaluable - it shows exactly why there is no need ofr everyone to be highly trained.

it highlights, if you will, exactly how ABA could be delivered within a school with a trickle down effect - trained and qualified teachers with tutored TAs, who nonetheless can still see the overall picture and follow the curriculum.

I think it is much easier to be asking for a "known" thing (even though what is known is the name, iyswim) than a "set of principles". much easier to point ot examples where it has worked, and no room for anyone to be wriggling out of it by trying ot claim that the bollocks they are offering is evidence based ("it just is - we take data as a school" or similar shitty waffle)

StarlightMcKenzie Thu 21-Apr-11 15:08:32

I suppose that it is that I don't envisage a lobbying group for ABA, but rather an empowerment group for parents to feel that actually, it is a GOOD thing to challenge professionals, and to ask them for their qualifications and their basis for an intervention.

That won't lead directly to ABA. In some cases, it won't ever lead to ABA, if a parent is satisfied with the answer, but the general challenge should be there. And I suspect, with challenge embedded in the culture, we would get loads more ABA as a result.

It sounds like a roundabout way of going, but it feels to me like the most direct path for getting as many people on board as possible.

'Measure Up' with a strap line as something like 'holding professionals to account for our children', - well would that round up the frustrated parents quickly?

sickofsocalledexperts Thu 21-Apr-11 15:09:33

Agree, silver, and the other thing that came up at the EABG - in a very interesting presentation by the two main ABA profs (Hastings and Remington) is that we must stop the solely negative campaigning for ABA (eg TEACCH is shit) and start to put positives out there. We need to come at "the enemy" with honey, not vinegar. I used to be in PR, and the charming but firm technique usually works best. People don't like to be told everything they've built their career on for 30 years is shit, they want an elegant seque into something new (ABA). We need to convince, not criticise.

StarlightMcKenzie Thu 21-Apr-11 15:12:54

I know that in my LA honey doesn't work though. Not from me especially, but I've seen the work of others trying to win the hearts and minds of our LA and the hostility they have received is pretty unbelievable.

silverfrog Thu 21-Apr-11 15:16:31

can see what you are saying, sickof - hard ot change the record though grin -especially after our shared experience with TEACCH!

Starlaight: hmm. I would hope that pretty much all parents would want the cohesive, structured behavioural approach (once informed properly about it) - after all, ABA is not actually just for ASD children, is it? So I woudl want the trickle down effect to still be there - not all children will need a full-on ABA programme, but all children can be helped by a behavioural approach, and viewing educaiton with a behaviourist's eyes.

I don't see "a parent being happy" as a reason to NOT introduce them to ABA/behavioural interventions. It doesn;t need to be done in a sledgehammer-to-crack-a-nut way, but being happy with an intervention on offer when you don't know the full range of interventions on offer is not fully-rounded happiness, iyswim?

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