Assessment delayed again. Anything I can do?

[smugtandemfeeder]

Assessment was supposed to be in September, have now been told I won't even be in the October ones, more likely December but no definite date. Who can I complain to? Is there anything I can do to make them more likely to take us seriously. So pissed off.

Are they giving any particular reason for this? And are they telling you this in writing? (and who specifically is telling you this?) Sorry.. just want to make sure on same page.

Triggles, we have seen the pead who said DS almost certainly has autism but that to confirm it we needed to go to the nursery assessment. At the initial appointment I asked how long it would be until the assessment centre and said quite clearly that I wasnt prepared to go away and be left alone without any support. They told me they didnt know how long the waiting list was.

I then had a letter to say it would be 9 months until the assessment centre. September.

Lots of other professionals (HV, EP, SENCo) all said he def wasnt down for September and EP offered to check when he was down for. Now Ed Psych has emailed to say he isnt down for October and is likely to be seen in November/December.

Nothing definite. Nothing at all. Just more delays.

I want to write a letter to someone but I havent even got the energy to think what to say.

I want to take them to some kind of tribunal to force them to do it but that is just silly and probably not possible. I tried complaining to PALS but they said it wasnt something I could complain about.

Okay. I'm possibly off base on this, but you mention nursery, so I'm thinking your child is 2-3yrs? Is your main concern about the delay because you are looking to get a diagnosis? Or to line up support for them in nursery and school? You don't necessarily need a diagnosis to start getting support lined up for them. (We don't have a confirmed diagnosis yet at this point, however, are getting a statement and have tons of support lined up for DS2 through school) Surely the senco is not holding everything off for a diagnosis?

that Pals won't get involved. although the 18 week target has been much watered down since the change of of government, in theory it should be 18 weeks max wait for hospital appointment. I'ld get hold of the relevant hospital trust complaints procedure.

Thanks both. Im just so desperate for some sort of diagnosis as I feel like everyone thinks we are making it up. We are finding it difficult to get access to help in so many things without a diagnosis. SENCo was supportive but we have already been told that they dont think we will be granted a statement without a diagnosis. I know you dont need one but I spend so much time explaining why DS has additional needs and what they are. A diagnosis would make conversations so much easier as I wouldnt have to spend so much time justifying why he has additional needs. Why I think he has autism.

I have started telling strangers that my DS has autism. It makes the conversations so much easier. It gets all of the "all 3 year olds are like that" out of the way.

Everything is a much bigger battle at the moment because the first question from support services is always has he got a diagnosis.

Ed Psych will not assess him until he goes to the assessment centre. He told me so.

Portage waiting list is a year.

SALT is no where to be seen.

Private psych has written to say the Childhood anxiety diagnosis is a working one and he doesnt see many signs of autism but wants to reassess him. Useful. Do I even include him on the statement request as a professional to consult?

Will write to PALS now!

We don't have an diagnosis yet, and DS2 has just gotten his statement. It DOES make things a bit complicated, but honestly even telling people they have autism prior to dx still gets the "all 3yo's are like that", trust me! DS2 is still awaiting further assessment for ASD, as well as other issues, most support services wanted to know what difficulties he had - as that is specifically what they need to address anyway.

I would look into requirements needed for assessment by EdPsych, because we were never told a diagnosis was pivotal in getting an assessment done.

It won't move you any further up the portage list, i wouldn't think, sorry.

If SALT is needed, you need to push both senco and paed about it and demand a referral.

And I would include the private psych as if it's found out that you went and didn't use their info, it might look like you're trying to hide info, IMO.

Ed Pych will assess DS but he wants to do it at the assessment centre - obviously if the assessment centre is delayed until December then so is the Ed Psych assessment.

I think my main problem is that preschool havent seen much of the behaviour I describe as I wont leave him at preschool on his own and he is happy ish as long as I am there. We are supposed to be doing settling in sessions but without showing them how upset he gets without me there then I just seem like an overprotective mother. If I had a proper diagnosis then they would take his problems more seriously.

I dont want to have to make him fail just to prove he has problems - as that would probably totally ruin preschool for him and I wont want to send him there.

ok, you can ask for a working dx but its unlikely to happen after one visit. Sadly the wait is quite normal.
You need to leave him at preschool, get them to see his difficutlies. I had this problem with preschool and it set dd2 dx back a further 6 months. Get back onto SALT. Preschool age is so hard.
Where abouts are you? Are there any support groups nearby?
I would strongly suggest you write a diary of his behaviours down, get the video camera out and film his behaviours.
HTH

Thank you. I am just so tired and fighting a number of battles, forms and processes at once. As we all are.

Will get back on to SALT.

Im in Bristol. Everyone keeps asking if I have called supportive parents - I just cant be bothered to ring people because I dont know what to say, what to ask, and I dont have the energy to tell everyone everything. I find it easier to ask questions here where I can think about what Im asking.

I have my statement request form now. I sent off the IPSEA template letter but they have sent me a form asking for more information.

Should I write a more detailed letter to go with this or just send it off with the contact details for other professionals invovled. Will they write to me and ask me for a parental letter at a later date?

So many things to do!

what is the statement for is it a SN nursery or school? just asking as the LEA generally only agree to assess if his current setting has evidence of your childs needs if they are not seeing your child difficulties because you are with him they will not be able to give the LEA the evidence, and they like lots of evidence. It is so frustrating I have been on many waiting list sometimes never reaching the top.

DS hasnt officially started preschool. He has just had two one hour sessions as settling in sessions. Preschool so far have not made any notes about his visits and SEN teacher failed to turn up twice to meet me. SEN teacher is now off for 2 weeks so they wont get much of a chance to assess him anyway. I dont want to leave him without the SEN teacher anyway as the others have NO IDEA about his needs.

I am therefore his main educator I think.

www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

Might want to check this link for complaint information. Daphne Keene is an NHS consultant who also does (private) assessments. Might be worth checking out. Don't know how much it costs. We waited and waited for an assessment; were told our son "probably" was ASD, but would have to wait again for ADOS to confirm. In the end, we just started therapy without formal diagnosis. We were still able to get a Statement on the basis of his educational needs which were very clear to us and the school. Hope this helps.