Diagnostic panel - reports I've not had sight of

[debs40]

We last saw our OT in April and she promised to do a report for us.

DS's diagnostic panel meets tomorrow so I chased the report.

It has gone to panel but I've not seen it.

Also, Ed Psych just left a message to say she has sent in her report but, again, I've not seen it.

Maybe, it's just my lawyer's mind, but this seems a bit off. I am sure these reports are helpful but it would really seem like good practice to allow the parents to have sight of a report before a third party has access to it.

Doncha agree? I've made this point to them.

totally agree, parents should see it first, and have the right of comment/amedment (not that htis happens often either!)

sadly, it happens time and again -we had several reports submitted in lke manner.

ime (and I really hope this isn't the case of royu too) it usually meant that the report contained something that the author knew youwould want changed...

Hi Debs,

Good luck with regards to tomorrow, when will they tell you the outcome of this meeting?. This is what I'd be asking them now.

I do agree with your point and of course parents should see such paperwork before such meetings but its more work for them they do not need or want.

If the diagnostic panel give a firm dx will you at that stage put in the application for the Statement?. How is that all coming along?.

The panel meets without parents so we have an appointment next week to discuss results.

It's such an artifice. They talk about the panel being necessary as it should all rest on ADOS/ADI but then we were also told that if the ADOS/ADI confirm ASD, then there is no need to discuss further with panel.

I got initial comments back from EP today which confirm she is going to do some sensory training and has highlighted need to prepare for transitions and allow down-time but apart from the 'school are supporting him well'. As exepcted.

It does worry me that these people feed into the dx panel. The National Autism Plan recommends this should happen but a dx of ASD carries more resonance and responsibility these days after the Autism Act (and for statementing) so you do wonder whether they can influence things.

My LA are baaaaaad, as you know, but I got nearly all the reports in advance (the only one I didn't get was the Autism Advisory Service one and I demanded the SEN Team sent it to me - I was simultaneously applying for a statement).

I submitted a document entitled 'factual inaccuracies in the reports going to panel'. It was a bit pedantic if I'm honest but so what? These documents are my DS, even if the little innaccuracy makes no difference he is still entitled to have the truth follow him around, not fabrications or lazy writing.

There were blatent lies in some of them though. One service insisted he had been getting monthly clinic sessions when he had been seen once in 9 months.

But you see debs why I say just focus on the outcome you want.

It isn't because these people aren't experts, it is because they don't have the culture, resources, funding, time, inclination sometimes, to get it right, so whatever they do come up with may as well be helpful to you.

I know we disagree on this a bit btw. Not trying to sell it to you.

Star, I don't want to disagree but I really don't see how you can get the outcome you want (even if you have a fixed idea about what that is) if you don't know what people are writing about your child. It is out of your control.

Hi. Absolutely you should see reports-preferably before they are distributed, but certainly at the same time as "professionals", and BEFORE a meeting!
Parents are supposed to be equal partners in the SEN process these days. Our ds psychiatrist is really good this way, and always lets us read letters/reports hes written and asks if we want any ammendments.
Ds2 school are still baaad at this, even though we have been through the process with ds1. The last minutes of a meeting they distributed as accurate, we sent back with ammendments, and asked they be redistributed to everybody. When you next have a meeting say you would like a copy of all reports in future, and at the same time as everyone else as a matter of courtesy.

This is the diagnostic rather than SEN process. I have emailed the service head and said that I think parents should see reports before they are disclosed to third parties.

I am really disappointed in our OT who has been very helpful up until now. I don't want to piss her off unncessarily but I do think she should have let us see the report first.

Hi Debs

This has happened to me too. School and GP got my DD2's Paed dx report three weeks before we got a copy. School had to photocopy the report during a meeting with them - which is how I found out they had the dx and I didn't! - and then I was trying to read it in the middle of the meeting. Was so and especially as it had glaring inaccuracies - e.g. on the first line, had DD down as one year older than she is just for starters. Just couldn't believe that school had the dx before us, her parents, and totally threw me in the meeting. This really can't be right.

"...if you dont know what people are writing about your child. It is out of your control."
This is soooo true. What others write about your dc can have a drastic impact in the service provision they receive-or not.
It was only when we requested all our ds files we saw in black and white what people had been saying re him and us for years. It became clear why his needs had been so badly managed for years, leading to his hospitalisation.
Forewarned, is forearmed.
I will never forgive those "professionals" for what happened to our ds, and am determined it wont happen again.
There is NO excuse-not lack of resources, time, understanding. These people are paid to do their job and train in their chose profession. They have a duty of care and that should always be paramount to them.

MelJLincs - OMG! That is truly outrageous. I hope you complained. When a child is at school, it appears to complicate everything as these people seem to believe school is the client half the time!

Bigpants1 - everyone has their own agenda but us parents.

That is what I find so hard. There are so many people doing 'half jobs' that if you're not constantly on the ball, challenging things, you will get nowhere.

The default mode is the path of least resistance. There is no question you can sit back and leave these people to it and just hope it all comes right in the end. But what a way to live!

Surely debs the outcome you want, is one where 'professionals' are suitably qualified and thorough, to give an accurate diagnosis and prognosis and recommendations, who you can trust enough to allow to challenge your own understanding and opinion of the issues.

But you can battle for that for years, and in the meantime your child is losing much needed provision they can only access with a half-hearted, vaguely accurate label of something random.

But you are absolutely right to get into a tiz about not being sent courtesy copies of reports about YOUR CHILD. FFS what are these people thinking?

And Mel

How and why are these people still in jobs? That should be instant striking off behaviour imo. How awful for you.

Star, I was commenting on your statement that I should "just focus on the outcome you want". But how to you disconnect outcome from process?

My desired outcome would be that my son receives a report which demonstrates that his needs have been understood and will be met, irrespective of the 'label'.

The reality is that this desired outcome can clearly be put at risk by incompetent professionals who don't know that they're doing and a process which borders on the ineffectual.

Sorry, I don't mean to sound sharp.But I have already been battling for years as you suggest and pressing and battling for a faster diagnosis. For what? To come to the end of a process I have no guarantee that the outcome will help my son at all.

You know I truly respect your opinion but I am not some sort of pedant or stickler for perfection, risking assistance for my son for my own ideals. I am just involved in a process where the outcome may well be that my son's needs are neither acknowledged or met and that is precisely because of its nature and the personnel involved.

Outcome/process, you cannot separate the two. You can't say 'oh the process is crap but it'll get me what I want' because actually it might do quite the reverse.

'Sorry, I don't mean to sound sharp.But I have already been battling for years as you suggest and pressing and battling for a faster diagnosis. For what? To come to the end of a process I have no guarantee that the outcome will help my son at all.'

debs This absolutely wasn't directed at you. It was more of a general point.

I was more confident pushing for the outcome I wanted because I had already had a verbal diagnosis and then a private one before the nonsensical process was complete, so it was simply a matter of telling them what I wanted and to get a move on.

'The reality is that this desired outcome can clearly be put at risk by incompetent professionals who don't know that they're doing and a process which borders on the ineffectual.'

Yes I agree. But the problem I have found is that you can risk getting the wrong outcome by pushing for a faster result, but there is also a risk to the outcome by not pushing. On balance, I'd go with the faster.

'I am not some sort of pedant or stickler for perfection, risking assistance for my son for my own ideals.'

Good grief debs I hope you don't think I think that. I think what seperates us is simply the level of hope/pessimism and nothing more. I have given up on them, you have not.

'Outcome/process, you cannot separate the two. You can't say 'oh the process is crap but it'll get me what I want' because actually it might do quite the reverse.'

I suppose my opinion isn't that the crap process will get me what I want (because what I want is the same as you really, professionalism, expertise, input for the benefit of my ds, not me, even where there may be conflicts), but I found my path in directing the whole thing because, quite frankly, noone else was.

Have you heard anything form the Dx panel today? Keep us posted...

No. On 24th, we see them to get the report.

I did get an email from the head of service apologising for the reports not being sent to me. He said he completely understood my point as he would feel the same if he was the parent involved and he circulated the comments to the whole team.

Fair enough I suppose!