Feeling uneasy

[JenRose]

I find we have an unusual situation.

 

The NHS CAMHS psychiatrist would not "label" DS and dx,d with severe anxiety disorder, OCD, sensory problems etc etc.

 

The LEA Ed PSych has stated that "At the heart of M,s problems is a severe communication disorder" and that he has "developmental immaturity" and "Litte imagination" and "restricted interests" etc etc.

 

Also, the LEA paed included our psychs,s dx as evidence of an "underlying condition" and also included the CAMHS psychs letter as evidence.

 

Now we have had our own independant assessment and he said AS.

 

So, the LEA were refusing to accept our private dx and saying that they needed an NHS one.

 

3 pieces of evidence have not been sent to us with our proposed statement

 

1, our psychs recommendations for M,s education

2, the NHS CAMHS letter saying that as M has shown imagination in the ADOS that he is not on the spectrum

3, a letter that is listed as "Further advice obtained by the authority"

 

Now the only way that we know what the CAMHS psych wrote is cos i wrote to her and asked her to kindly provide us as M,s parents with a letter pertaining to his dx as she had not written us one before.

 

I have written to the LEA asking for the missing evidence but have had no reply.

 

Something is going on and im feeling very uneasy.

[butterfingersbimbo]

yeah i really dont blame you........

 

so am very confused now.....what's his dx according to them then????

 

bet you are well and truly of all this aren't you......

 

basically they are going round the houses and saying that M has problems associated with autism but hasnt got autism???? how can they say that with a straight face???

[UltraMum]

Now we have had our own independant assessment and he said AS.

 

So, the LEA were refusing to accept our private dx and saying that they needed an NHS one.

OK - CoP here:

 

7:16 Before deciding whether to make an assessment the LEA must issue a notice under

section 323(1) or 329A(3) of the Education Act 1996. The LEA:

 

viii. should ask the parents whether they would like the LEA to consult anyone in addition

to those whom the LEA must approach for educational, medical, psychological and

social services advice, if the LEA decides to proceed with the statutory assessment

ix. should tell parents that they may also provide any private advice or opinions, which

they have or can obtain, and that this advice will be taken into account.

 

So - the Code says they should take this advice into account ... you could query why they do not accept the opinion of your independent assessor ... be good if you could have a list of their experience in this area ... you probably alrready have

HOWEVER

 

7.64 .... It is the child's educational needs rather than a medical diagnosis that must

be considered....

 

They are assessing educational needs - not making or confirming medical diagnoses ... so you could quote this section of the CoP and ask why they feel it necessary to have a medical diagnosis when it is educational needs they are assessing not medical ones

 

3 pieces of evidence have not been sent to us with our proposed statement

 

1, our psychs recommendations for M,s education

2, the NHS CAMHS letter saying that as M has shown imagination in the ADOS that he is not on the spectrum

3, a letter that is listed as "Further advice obtained by the authority"

 

Now the only way that we know what the CAMHS psych wrote is cos i wrote to her and asked her to kindly provide us as M,s parents with a letter pertaining to his dx as she had not written us one before.

 

I have written to the LEA asking for the missing evidence but have had no reply.

 

Something is going on and im feeling very uneasy.

 

OK - back to the Code again -

8:30 All the advice obtained and taken into consideration during the assessment process must

be attached as appendices to the statement:

The advice appended to the statement must include:

A Parental evidence57

B Educational advice

C Medical advice

D Psychological advice

E Social services advice

F Any other advice, such as the views of the child, which the LEA or any other

body from whom advice is sought consider desirable. In particular, where the

child's parent is a serving member of the armed forces, advice from Service

Children's Education (SCE).

 

Write to them again and say that you are asking for the clock to be stopped in relation to the proposed statement as you are not in receipt of the full appendices. Explain that you will not be able to comment on the statement until these appendices are received. End by thanking them for their speedy reply to the letter as you all have xxxx's education as your concern and you know they would wish there to be a speedy conclusion in order to make sure that xxxx receives the support he so obviously needs.

[JenRose]

Thanks butterfingers and ultramum, that COP is really useful.

Today i received a letter back from LEA with 2 of the missing pieces of evidence that we requested but still one missing and its listed as

 

Appendix F- Other advice obtained by the authority.

 

So i have today written another letter - this is the gist of it:

 

 

 

 

We write regarding the proposed statement which we received on Monday 11 December 2006.

 

 

At this present time we are not naming our preferred school in Part 4, this is because:

 

 

1, We still do not have all the missing pieces of evidence that are shown in the appendices that we wrote and asked for on Monday 11 December we have today received :

 

A4 Parental Representations Dated 07 November 2006

B2 Educational Advice- XXXXXXXXXXXXXX Primary School Dated 20 October 2006

C2 Child and Adolescent Unit Advice Dated 09 October 2006

 

We still do not have F- other advice obtained by the Authority.

 

 

2, We believe Part 3 of the proposed statement is inaccurate as it does not specify the minimum hours of support nor does it quantify the hours/provision of support for M.

 

 

When we are in receipt of the full proposed statement we shall write to you and tell you of our objections.

 

As per the form that you sent us we have ticked the boxes for requesting a meeting with our named officer and also that we intend to make written representations to you concerning the proposed statement which we shall do when we are in possession of ALL evidence.

 

We enclose that form with this letter.

 

Thats what the lady from IPSEA told me to write, she told me to make sure that i used the terms specify and quantify in the letter.

 

I cant give them my objections yet as i dont have all the parts of the statement.

 

And, i wrote and asked for a copy of the minutes of the last meeting that was held, and they have written back saying that the school should provide them, now thats rubbish cos the SEN manager said at the meeting that she was taking notes, the school wasnt involvedas M wasnt going to that school and we just their building as somewhere to meet, now this is the meeting when they told us that CAMHS had written saying no to a dx of AS.

 

I think its appalling that the manager of SEN dept was taking notes and obviously doesnt want to share them with us.

 

They are complete and utter ######-excuse the swearing.

[JenRose]

Received this letter this morning from the boss of CAMHS the psychiatrist who wouldnt dx M with ASD.

 

Dear MR and Mrs XXXXX

 

Thankyou for your letter dated 7th Dec 06. Iwas asked by the Education Dept to send a report outlining my involvement with M and asking what i would recommend.

 

I presumed that XXXXX XXXXXXX was sent a similar request and that she would make some recommendations as she has known M for much longer and had carried on seeing him. I let them know that my involvement with M was very limited and so I was not in a position to make any recommendations. LEA Dept has made it clear that a Statement of Special Needs is based on a child,s needs and not on any particular diagnosis.

 

I am aware that some practitioners do video the ADOS but not everyone does and I did not have the facilities to do this when i saw M. The ADOS is just part of the assessment process and it was the part I was asked to undertake by XXXXX who had done all the other assessments of M.

 

The Education Dept in its request letter to professionals makes it clear that copies of our reply letters will be sent to parents which is why I do not send out a copy direct to parents.

 

Perhaps in future, I need to check with parents if they want me to reply to the Education Departments request for information. I would be grateful to hear you views on this.

 

 

Right now because i have AS and struggle with hints,sarcasm i cant get in my head what she is basically saying,

Is she throwing it back on the Consultant who has had the most involvement with M, and if so why were we told by the first Consultant that she couldnt dx M with ASD and it had to be this one who had wrote the letter.

 

Also, i was told by the first consultant that the CAMHS do video the ADOS.

 

All i want is for the NHS to endorse M,s dx of AS, as we now have our private psychologist saying yes to AS, the Ed PSych saying that at the heart of M,s problems is a profound communication disorder that can make it extremely difficult for M to be understood andfor him to understand other people.

 

Then the paediatrician says in his advice that:

M has a history of Anxiety, school phobia/refusal for underlying condition please see reports of

Our private psych and also the CAMHS psych.

 

What can i do now?

 

Do NHS,s endorse private dx,s when there is sufficient evidence or am i wasting my time?

 

Thanks

[JenRose]

got a reply from our psych, he says that the CAMHS psych is giving the other NHS psych the green light to go ahead and make recommendations for M and also that we should get the NHS to endorse his dx now as this CAMHS psych is stepping back.

 

WoooHooo

 

So i have written a letter to the NHS psych who first suspected AS and asked her will she give her recommentations to the LEA and ive also written to the LEA asking them why they hadnt written to her in the first place as she has spent many months with M.

 

Our psych says that he thinks she wont say that he,s right and she wont say that the other NHS psych is wrong but that she will say in her opinion that she agrees that he has AS and that hopefully this will be the NHS diagnosis that we want/need!!!!!!

 

Also, just heard back from my NAS lady and she has given me some really good things to write to the LEA and tell them we are not happy with the proposed statement.

[baileyj]

Sounds like you are making good headway, slowly but surely. Keep it up, if you do, you will hopefully get the right result. You have all the right people helping you, and NAS or IPSEA are so helpful.

 

I know its very stressful, and tiring, but if you do get a good result, you will hopefully feel, like I did, how worth it was in the end.

 

Jo

[UltraMum]

It's a marathon slog getting the statement sorted but you're doing well - just keep at them and don't take anything at face value