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

[StarlightMcKenzie]

Any ideas?

Absolutely true, Moondog...a lottery it is. But that isn't necessarily the method itself. It is the way the method is filtered down the ranks...with the end result being something completely different from that which was taught by the expert to the 'select few'.

An example, of what I considered to be excellent practice:

A Higher Level Teaching Assistant was talking to parents about Sensory Processing and how they work on sensory needs at DD1's school. She gave the illustration of a little boy I will call 'Mark'. He has severe and complex needs, as do many of the children at DD1's school.

'Mark' had been observed over a period of time. Detailed notes as to his response to stimuli had been kept. The HLTA had looked at his data and realised that he had gradually decreased the use of his left arm. Because they had such detailed notes, they could see that he had been using his left arm more, and they could track the reduction in use. So they then looked at strategies to increase it.

Now, that school doesn't use ABA, and doesn't use SMART targetting (yet). But they are looking at the children as individuals, seeing, noting and tracking trends in their development, and responding to it.

At the end of the day, whether it is called 'ABA' or 'SMART' or anything else, doesn't matter. So perhaps it would be best to start from the weakest 'edge' of the problem. Start by getting good tracking, or even good individualisation...whatever.

DD1's school started to get a focus on data last year. It was a key part of their School Development Plan. This year they've said 'do you know...we aren't challenging our children enough', and they are looking at how to ensure they have challenging expectations right at the start of the school year for each child. It is baby steps, but by having baby steps, you don't get a patchy result.

Yes, agree with all you say.
it is about being methodical and relynig on data, not vague half remembered anecdotal evidence which is what many rely on which in itself is staggering.

I agree. I think the purpose of any group should be that the service delivered 'measures up' whatever the approach. If one approach can be justified for a particular child and it works for them, then dogma has no place.

The reality is that the battle with LAs happens because, in alot of parents' experiences, trying to suggest you are fighting on the same side for appropriate provision cuts no ice because they do not have the expertise to offer anything more than generic interventions which are not child specific. This is just the way alot of systems are set up.

So, they suggest visual timetables for all ASD children or provide generic social skills groups where progress is not measurable as no one is sure what they are supposed to be measuring.

We'd all like to be fighting in tandem with our LAs but the sad fact is many of us are being shafted by them despite our very best efforts at diplomatic and evidence based persuasion. If you're not, then I am glad for you.

Still away, but I just wanted to say that genuinely, if this is going to work then the uncomfortable discussions need to be had and I am relieved that to have seen posts that have brought up some of the challenges.

We need to be very clear about what we want to achieve and also realistic about what is achievable, and we have to get momentum whichever way is the most efficient. We also want to guard against assumptions that things aren't working just because they are run by an LA. This is hard for me because I really do have a ridiculously rubbish LA with very dubious practice and a reputation for bullying parents. However, even I recognise that there are individuals and groups of indivuals that are effective and it would be plain stupid to put them on the defense when they are probably the best bet for going forwards fastest.

Lougle I take your points completely. However, I do think it is still important to hold onto the anger as it is a driving force. I think too, that it is important to recognise that a small error or minor act of neglect can have quite a devestating effect on the life chances of our children. Surely, those that are doing good work would have no problem with backing up their rationale, evidencing their practise etc. FWIW the person who ran DS' home ABA programme isn't against the TEACHH approach. It is the blind (and often unqualified application) and absence of data that is problematic.

I think one of the main problems (and frustrations) that many of us have is that we have no clue what advice the schools are being given on how to 'deal' with our children, and often this is because they (The LA and the schools) are scared of our analytcial and judgemental eyes so they often don't go out of their way to include us or let us know what is going on. This spirals the frustration and contributes to the disjointed approaches of home and school.

I would love for a 'group' to try to address this too if at all possible. Accountability should be a 'good' thing. Professionals should want to work with parents because most (particularly teachers) go into the job because they want to make a difference to children's lives.

I would want a 'measure up' type group to increase accountability, but surely the more open and shared our stories are, and the less hidden, the more reason for working together to sort out the very real and terrible problems.

What about ' Getting it right' ?

The more open the better! There are lots of low cost strategies that would help many of our children, if only we knew.

An example - I tried moondogs "tell the time" idea using a big calender to mark off the days and oh my! What a help to my lad it has been, he gets a lot of reasurance from it. Yet the cost to implement? £4.20 for a tescos value clock so I could deface the clock face, and a free gardening wall calendar I swiped off my Mum : ) We've only been using it a fortnight and already a leap has been made in his progress.

His new school are providing the weekly timetable for the fridge door, (the old one point blank refused to give me a time table btw)- again the cost = approx 10p for the photocopy. Not all SEN strategies cost a fortune to implement : ) Access to knowledge like this would add value across the board.

Increased knowledge across the board of stuff like this would free up more time/resources/money for the things that DO cost a fortune. e.g Funding would become more targetted and effective. An awful lot of cash is simply wasted under the current system, and it's so frustrating to see tax payers money thrown away on lea legal eagles for tribunals etc when that money could be spent on proper training and measurable interventions etc.

Bochead, that's fantastic news!
Most of the stuff I do is very low cost.
I'm piloting an interactive diary at the moment that has been hugely successful in improving communication between home/school and enabling the child to become a transmitter of information to/from shcool/home instead of just being a passive person to be discussed
'Had a good day. Ate all his chips.'
Yadda yadda yadda. What the hell is the point? Noone finds it interesting or enjoyable to write/read this dirge.

Cost? Nowt beyond paper and a file.

Justabout, I would be in there asking why.
Actually, I would write.
Often no love lost between SALTs and teachers which is unfortunate.

That's a good point justa. However, I don't envisage a group that was pushing for gold, just accountability and rationale. Requesting accountability and rationale won't be the same as attacking and going into battle, but it should challenge practice and assumptions and that might feel uncomfortable to those on the receiving end.

Hopefully, those in the professions that we find ourselves frustrated with that share our frustrations will be able to come forward, or take pride in keeping us off their backs.

Information sharing needs to be central I think (anyone disagree?) so data on LAs as well as shared stories including positive ones, for people to be able 'measure' Local Authorities against each other to try to break down some of the secrecy and isolation.

If anyone is truly up for a face to face brain-storming session then please PM me with your email address and I will send a link to a internet-based interactive diary so that you can state your availability in terms of dates and venues. Please let me know if you are willing to host. I am, but South Herts might not be the best venue to get the most who want to participate.

I have said a lot on here, because I wanted to get ideas out there, but please don't anyone think that I want control of the direction. I want it to benefit us all and I want it to work overall.

Justa Sadly that isn't true. I live in a relatively deprived area where parents are told that they are getting a high level of support and are just so utterly grateful for 1 hour a week visit from the autism outreach person for their already violent and out of control 3 year old, and they have been told and therefore do, have very low aspirations for their children.

They're not angry, they are sad and haggered and have given up before they've started worshiping the one hour of companionship from the SN nursery nurse.

The idea of this group sounds great! When we began fostering the child we have had for the past 10 years he was at a local special school. He had to stay there for the first 3 years of his placement with us while paperwork was done to keep him in care and then to get special guardianship so as he could stay with us. Those 3 years were hell! Smearing faeces, biting, kicking, screaming, crying, no form of communicating and when we would ask what to do they never had any ideas! When we had an independent assessment done it turned out they were reinforcing many of the behaviours. The IEPs were shocking, one of his targets was to 'experience weather' and another one was to 'smell a flower'. So yes a support group which helps parents get accountability would be great! I spent hours talking to IPSEA and building evidence! Getting independent reports etc. We got there in the end though and have a funded home based ABA program, which has changed all our lives! However we had to show them that their method was poor and ABA was the better option.
When it comes to funding though it really is a postcode lottery! If we moved 3 miles down the road we would have to go to tribunal to get it, but 25 miles further along you are into another county that will happily fund it. Also Scotland is really poor, think there's only one or two families that get any funding and there seems to be less opportunity to challenge things in Scotland through tribunals etc.
Really like the idea of a parent support group on achieving accountability!

Has this gone anywhere, is there a group yet? Is it just for certain groups?

Not at all Charlie06. I've just got a bit caught up responding to ds' proposed ammended statement to be able to think clearly. Don't want to waste anybody's time with an unfocussed wooly meeting do I?

Absolutely right, there's enough of those to contend with as it is? have you decided on a name yet? :)

The working name is 'Measure Up' but it won't necessarily be the name we end up with. It really depends on what we want to achieve.

Hi Starlight, please could you PM me when you set your group up as I would like to be part of it?

SMART Progress?

nohope, - yes, you'd be welcome, - but would you mind PMing me so I don't lose you as I'm keeping everyone safe in my inbox.

I promise I'll be in touch shortly. I just gotta think one or two things through as I don't want to waste anyone's time.

Will do, hope this gets going soon we all need it!

I agree with Loughie who states
"I think one of the main problems (and frustrations) that many of us have is that we have no clue what advice the schools are being given on how to 'deal' with our children, and often this is because they (The LA and the schools) are scared of our analytcial and judgemental eyes so they often don't go out of their way to include us or let us know what is going on. This spirals the frustration and contributes to the disjointed approaches of home and school".

How is this going to change? I wonder how school staff and other "professionals" attitudes to parents will "fit" with the recommendations of the green paper. What training will they receive to enable them to work more effectively and openly with parents? How will this be monitored?

Sorry if this sounds militant but I feel sometimes that it isn't just I am not included but that information is deliberately withheld so that I am unaware until after decisions have been acted upon. Any one else feel like this?

Okay, final call for those who want to be involved.

You have half term to decide (actually there's no deadline really, but after half-term I'll set up a communication vehicle and get us together online followed by a face-to-face brainstorming).

I have lots of ideas now and hopefully you do too. I think we should aim for simple, factual, data and policy publication with a seperate section for the emotive stories to compare LAs.

Once established with a bit of meat, then endorsement from relevant agencies possibly, but certainly relevant professionals - and it would appear somehow that I now have a few links to a few lawyers, web designers, university personnel and journalists, (but that has to come later when we have something credible, for impact.)

It would therefore have to be extremely simple, sensible and truthful product, but as you all know, the truth here is horrific enough to be sensational.

count me in please,

bump in case anyone missed this thread.