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Paed just told me they won't assess ds for autism because........(and ABA)

(63 Posts)
AngryWasp Mon 24-Aug-09 12:49:16

I got a private dx. I told her I wanted the full disciplinary because I never want it to be held against me that ds didn't have one, but she told me that the MAA is a diagnostic process and he has already been diagnosed.

I'm in tears, but do I really not have any need to worry?

I thought I would need a LA Multi assessment if I have any chance of fighting for ABA?

He was due to have this on 21st September but it looks like all it will be is the second Team around the Child meeting (the first one was more like 'working around the team', - or 'team working around the parents'.

Can anyone suggest what to do now, or reassure. Many TIA.

PipinJo Mon 24-Aug-09 13:42:09

Message withdrawn at poster's request.

PipinJo Mon 24-Aug-09 13:45:21

Message withdrawn at poster's request.

AngryWasp Mon 24-Aug-09 13:48:13

The Paed said he wouldn't get OT anyhow because he doesn't have delayed motor skills. He has head banging and flapping to extreme however and I suggested it got in the way of his learning, - still, no referal from her, and no referal from my GP sad

Paed said ds' biggest strength was me, - well cheers for that. I don't actually see that as my job. I'm his parent and as such it is my job to support the professionals in theirs, not blardy well do it for them.

grrr, - sorry. Pipin Tis Starlight here. You reckon we need independent/private reports anyhow? The money side is soooo scary!

AngryWasp Mon 24-Aug-09 13:49:42

Pipin I think I could make a good case for the multi-assessment to go ahead. Is it worth fighting for, or a bit irrelevant?

PipinJo Mon 24-Aug-09 13:56:37

Message withdrawn at poster's request.

grumpyoldeeyore Mon 24-Aug-09 14:04:51

Ok so you don't need the other reports for a diagnosis, but you DO need them to assess DS's needs. The SALT will have to set a programme for others to implement. An OT assessment is needed to do a sensory profile - my DS doesn't have motor delay but does have auditory sensitivities, taste (eating) issues etc There is this stupid line between health and education in autism the diagnosis bit is health but most of what you do about it is education - except it gets confusing because SALT and OT are health but PECS for eg can also be education. I think you are having a statutory assessment done? In which case you should get SALT / OT / Ed Psych as part of that. For behaviour problems you should be assessed by clinical psychologist we saw one for diagnosis but don't get to see him again because DS has no behaviour problems which are "really stressing people out". I would definitely say you think SALT / OT / Clin Psych / Ed Psych are merited and write to both the paed and LEA and let them sort it out. You shouldn't have to pay for reports yourself - but be prepared for the NHS / LEA reports to be totally useless and to have to go and get your own anyway. The ABA will do some baseline testing.

Debs75 Mon 24-Aug-09 15:18:57

We didn't get an OT assessment until ds was 8, dx at 3.
I know you can do this so keep banging on at them. I would still want a multi- assessment and have you been offered a Griffiths assessment yet?
Have you got anywhere with education yet?

AngryWasp Mon 24-Aug-09 15:19:25

pmsl at the implication that you shouldn't be charged for useless reports.

I'm getting the impression that it doesn't matter how, I just need to do what I can to get the most supportive documentaion and stay focussed on the goal!

AngryWasp Mon 24-Aug-09 15:36:46

He's had a griffiths, - conculsion was he was too uncooperative to conclude grin

Nowhere with education. Still offering 1 hour a week support starting from September with an invitation to a 2 hour support group that we haven't a hope in hell of getting to with 2 preschoolers, a double buggy and no own transport.

Just spoken to a very senior Psychologist in the LA who agreed with everything I said about the piss poor service from the authority but told me I'll only ever get anywhere by tribunal.

Wowee - 3 hours

moondog Mon 24-Aug-09 15:54:15

I'd question what OT can do for you by the sound of things-certainly not the skeleton service you will get.

SALT is actually an educational remit, whatever they tell you.

I'd write to SALT dept. and say you want a written assessment of communication to complement private diagnosis.

It's good that the paed. has accepted the private diagnosis.Saves you a lot of faffing and waiting and time is of course worth money. smile

moondog Mon 24-Aug-09 15:56:45

Remember, they will hold out until tribunal to see if you have the balls to follow it through, but they don't want one anymore than you do. They often capitualte at last minute.

AngryWasp Mon 24-Aug-09 16:14:24

But moondog it isn't about balls is it? How can I not go to tribunal? It makes me sick thinking about it, but I don't feel like it is a choice.

I feel like I've been framed for a horrific crime that I didn't commit and there is a good case against me, and even though I know I am innocent and believe in myself, there is always the chance of an injustice, and that a court hearing is not optional.

I've got a bibic interview on Wednesday. If they agree to an assessment I think we'll get OT input. Provided we are given information/exercises, - well that's all I'm really after.

I just spoke to my GP who told me that they don't refer to OT because it is for adults only, so I suggested he referred me to the pead OT department hmm. He said 'no', and after I explained that I'm currently winning bigger battles than this one so can he figure out how I can access it if not via him and he agreed to phone me back in a week after research but to expect a 12 week waiting list if referred hmm.

moondog Mon 24-Aug-09 17:18:49

I can well understand your feelings. That is indeed how it feels.

I'd bypass GP re OT and ring them yourself and just refer your own ds. If they say not possible, ask them for policy that says it aint.

And yes,it involves more time,more effort, more work but that is the status quo unfortunately.

I'd be interested in BIBIC thing. I know a bit about them and they have good reviews on here but not sure how it fits in with ABA tbh.
Keep focussed, don't go chasing too many things at one time [as you know].

AngryWasp Mon 24-Aug-09 17:37:15

Ah moondog I agree with you, but tbh I'm quite happy to have a couple of days 'off' with people that care and access to professionals.

I already asked OT to take on ds, but they said that children with autism don't meet their criteria unless specifically requested by a paed but they'll put some relevant worksheets in the post hmm Guess I could ask for a copy of their criteria document.

More effort, - more work. Don't I know it! I expect to be paid millions when I return to work for my experience in getting a job done despite numerous conflicting political agendas and agressive stakeholders.

Sorry pipin didn't answer your question. DS is 2.9, dd is 11m

moondog Mon 24-Aug-09 17:44:38

It's true that official looking reports from other places submitted do make you stand out as Parent Not To Be Messed With.

As we mentioned before, this experience changes you for life. I do feel I am a better, stronger, tougher person who will never be buggered about with despite it all.

moondog Mon 24-Aug-09 17:49:25

I take it you are liaising with SNAP/Parent Partnership through all this? Even if you feel they can't help you much, by knowing what is going on, [and for the LEA to know that they know what is going on] they can monitor what is going and help/support you [and others] at afuture date.

Also remember the power of the Formal Complaint. I trust you have info. on how to follow protocol for both LEA and Health Trust?

Always handy when you ring up a dept. where someone is being difficult, to say 'BTW, can you sned me acopy of your complaint procedure please?' Follow it up with a request for person's full name and title.

That gets things moving.

WetAugust Mon 24-Aug-09 18:03:34

Hi AngryWasp
I don't know the backgroud to your case but they key to getting the services your child requires is through a multi-disciplinary assessment. Again, I don;t know if you / school have made a formal application to the LEA for an assessment that may lead to the issuing of a Statement or not.

If you haven't that is the next step. If you have actually made a formal request, then you need to lodge your appeal against the LA's refusal to assess with SENDIST now. and also tell the LA that you have done this - as Moondog says they may capitulate if they know they will have to fight you at SENDIST.

SENDIST are more than likley to uphold your appeal against the LA's refusal to assess - so well worth appealing. the LA know this but you have to play ahrd-ball with them to get them to understand that you are a parent that means business!

Obviously any prvate reports: Ed Pysch, SALt etc you can collect will strengthen your case at appeal and also help you understand what exactly in the way of support your child needs and therefore what you should be fighting for.

Best wishes

AngryWasp Mon 24-Aug-09 18:05:51

Cheers moondog I did call the LEA complaints dept and when they told me they'd send a form I asked for several.

Parent Partnership have been pants over the summer hols, and before to be honest, but I don't feel I have pushed them. I'm told the person in my area is good so perhaps I was just unlucky in the pre-hols run down.

Finally FINALLY spoke to someone who I could talk to. The Senior Ed Psych with Autism Specialism who was open with me. She wasn't particularly helpful I have to say, but neither was she avoiding the questions. She agreed with me that the national guidelines recommended 15-20 hours autism specific support and that it is not an unreasonable thing to expect in a statement therefore, even though the current offer is 1 hour and everyone else has been telling me I'm lucky to be getting that. She also told me that in her 20years in the authority shock no statutory assessment has ended in anything but a statement (well 2 did but they were reversed at tribunal).

She also told me a load of nonsense about why ABA isn't very good (i.e. the old chestnut of it being effective at teaching skills, but those skills that are taught being irrelevant to real life) but conceded that if we were comparing it to what we were being offered I could have a point. She kind of hinted that if I were to push for a home programme it should be for sonrise but I got suspicious then because I know there isn't the wealth of research that there is for ABA and is therefore likely to result in a weaker tribunal case.

moondog Mon 24-Aug-09 18:14:15

AW,when people give you crap like this, ask
in icily polite fashion
'Ah. You must have access to more recent research than me then. Can I have your references to these particular pieces of research?'

Now,she of course won't have them, but as a professional who understands the importance of evidence based practice, she is over a barrel. She has to give them to you! If she won't [and she won't as they don't bloody exist!!] then you have another piece of ammunition.

Make a note of convo and non appearence of mythical research to back up her statement. Possibly follow convo. with a letter a week or two later

Dear Psychologist
Further to our convo re you telling me ABA was shite, I requested your refs and note to date they have not arrived. Please pass on ASAP.

You of course cc that to various relevant parties.

AngryWasp Mon 24-Aug-09 18:14:20

Thank you WetAugust I am interchangably Starlight and AngryWasp depending on my mood.

The panel has agreed to assess. I sent the model letters recommended on the ipsea website in advance of the panel meeting with 'should we be refused assessment, this is the information I would need for tribunal blah blah, but should the panel agree to assess I'd be interested anyway for my understanding'

Not heard anything wrt the letters, but they are assessing. Ed Psych turned up the day after the panel decision shock

moondog Mon 24-Aug-09 18:15:56

And the reason it is so vital that you read Sense and Nonsense is that it talks you through exactly how to counter obstructive people who will come up with nonsense like this.

AngryWasp Mon 24-Aug-09 18:25:54

Yeah, read most of it. The section on the 'eclectic' approach made me cry. Tis so blimmin straight-forward I reckon my asd toddler could argue his own case at tribunal.

I don't feel yet in a position of challenging this psch because she has opened a door to information and I think she could be helpful in the future, but I'm thinking of submitting a letter requesting the exact details of why the local authority does not fund aba programmes in general, and perhaps why they would not suggest/recommend this approach for ds.

moondog Mon 24-Aug-09 18:29:22

You could compose a letter saying

'In light of the following research could you explain why on xx/xx/xx Dr. XXXXXXX informed me in aphone call that ABA is 'not appropriate'?

Do you know about the SCAMP Southampton uni project??? That has caused areal stir with fab results in UK in last fewyears.

moondog Mon 24-Aug-09 18:33:06

Research Autism is a great organisation dedicatedto evidence based treatment. Read about SCaMP on it]]

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