Why did ds' CDAC take nearly 6 hours and is still not complete?

[MoonlightMcKenzie]

Is it because I'm an awkward bugger and asked too many questions?

It's not as if they didn't know what the outcome was going to be. I'd already sent them his private dx.

They rushed through the action plan and so all I have come away with is a meaningless piece of paper.

I just don't understand why they set aside 3 hours and it took double that.

Probably because you asked a lot and because you are going through statutory assessment so they know they'll get asked about your ds.
Be fair - if it had taken 2 hours you'd have said they'd rushed it!

Moonlight, not sure what stage you are at but as a comparison, ds2's CDC took 3 hrs for 1st appnt & then invited for 2 hrs per weeks for next 4 weeks for in depth assessment.

I think sometimes they don't know what they will need until they see the child.

Or maybe you just did ask loads of questions

& this was with existing reports from SALT, OT & Physio because of existing CP dx.

We had a 2.5 hour CDC in March, and we were invited to the CDAC follow up yesterday that was supposed to have finished at 12, but finished 2:45.

It was VERY thorough, and I'm glad, but I suppose I'm a bit confused why they didn't schedule it to be 5.45 hours in the first place and whether it was due to something unique to us or ds, - but even that doesn't make a lot of sense because he already had a diagnosis.

Perhaps it was because there were a lot of professionals involved!?

What was going on for six hours?
What proprotion of time was spent with you, with him, and so on?

9-10:30 meeting with all the professionals (10 of them)

10:30-12:30 Assessment of ds in one room (by EP and 2 SALTs), interview with parents in another (Paed and SNHV)

12:30-1:30 Feedback session without parents

1:30-2:45 Feeback session to parents with rushed through presentation of action plan

'12:30-1:30 Feedback session without parents
' aka lunch (though to be fair they would have needed it)

My guess is that A) you asked a lot of questions; B) they knew your rep so wanted to do everything very thoroughly indeed

Action plan?ocme agin? Nope don't think we that here (Action I mean ) LOL

Blimey!
Ten people. What's that all about? Do you feel 10 people can/will have meaningful input into this?

Have you asked for notes/minutes form session without parents (not suggesting it is sinister, just saying I'd want to see it-as is your right. Reember too all these people will have opened individual files on your child. You can see those at any time too. At statmeenting time, it is wise to stipulate on statement that you will be informed of all meetings and that copies of all correspondence/reports pertaining to your child are to be sent to you. Sneaky tip: It is often nigh on impossible for peopel to remember this each time, so it is a great piece of bargaining power for you to have if things get sticky.)

What is the action plan then?

BTW Moondog I was going to ask you about the test they did. The SALT had told me in advance that ds was far too young to do a formal assessment and that the CDAC assessment was going to be informal play.

I asked if they would try to do a formal assessment anyway and they agreed.

It was a pre-language p3? I think, but the SALT didnt seem able to give me any more information than that. His expressive came out as 2yrs 1month and is receptive as 1yr 5months.

They said I'd receive a copy of their report but can I ask for the raw data?

Dunno why there were 10 people. I was told so they could all confirm that ds was consistent across settings and feed verbally into the diagnostic process. They were SALT plus boss, EP, SNHV, HV, Children's Centre Mnanger, HT of preschool, Paed, Autism Nursery Nurse. Actually that's 9 (unless I've forgotten anyone).

I can assure you that they didn't go for lunch in the 1:30-2:30 meeting. I got the impression even THEY didn't expect to be there and were whinging about being hungry and making me feel pressured into ending the 'event' before I had really got to the bottom of the action plan.

It's really hard to formally assess very small children who will probably not comply with basic instruction.

Pre-language P3?
Doesn't ring a bell.
Something like the Symbolic Play Test which involves simply giving the child differnet sets of toys and noting what they do/don't do with thme via a checklist is a very useful thing.
No reason to feel suspicious of what is used (although if you want a comprehnesive overview of your ds's strengths and needs in one assessment, nothing will beat the VB Mapp which is a new ABA assessment tool (and therefore not likely to be carried out in NHS clinic).

You can see the raw data/original scoring form if you insist,but I doubt it would make much difference. Nobody would be deliberately obscuring or fudging results!

Action plan then???

Oh no, just for my own interest. I like things like that. I mention it to our 12yr old SALT today and she looked very surprised although not against giving me a copy.

Oh yeah - action plan:

Speach and Communication - A programme of SALT to be integrated into home and educational setting

Medical - Genetic testing.

Parent support - HV to visit parents at home and ensure they are aware of all support groups.

Education: - IEP to be written.

I kid you not!

lol at 12 year old SALT
Ask her to talk you through how it is administered and then the scores.
So, Action Plan consists of all the things that would be done anyway.

IEPs waste of bloody time, written with a computer programme.

Good idea. I'll ask her that, although tbh I'm lucky if I get more than 3 minutes ad hoc 1:1 with her a month.

I've written the action plan word for word btw.

Shall I write my own IEP in advance or just refuse to acknowledge it?

Well, politely insist.
'I need to know what you are assessing him for and how it works. I'd be grateful if you could go throguh it with me'.
That's not an unreasonable thing to ask!

Re the IEP, it may have some useful stuff in it. See what it says first.

Remember:

1. Pick your fights

1. Stay cool and polite

1. Remember that nonone is actively trying to prevent you having something beneficial-they know only about how to operate within an imperfect system with imperfect resources

1. Record everything

what is a CDAC?

Great. I'll do that. Hard to stay focussed sometimes.

I have an idea why it took so long. DS needs to meet 5? of the 12 criteria for the diagnosis, but they said that he meets 11-12.

I'm guessing they weren't able to save time by just saying 'nope, nope' to some of them and had to discuss each criteria in detail!?

When the psych described the dx process to us, she said the initial bit with just me would take 2 hours. It took 6 (spread out, obviously!). The ADOS also took double what they estimated. This was on top of the copious notes they already had as he'd been 'under' CAMHS for years already and was statemented etc. Best to be thorough. I would guess that the action plan was brief because each services needs to separately detail what they will do and a multi-agency meeting was probably not the place to go through everyone's in detail.

You're probably right giveme, but I've had an 'official' response to my question about why it overran.

Apparently they all do

obviously it is a secret