Advice about self-refering to the EP, please

[bid]

Hi guys,

 

I have a friend whose son has been seen by CAMHS, but has been told he just 'misses' the criteria for a dx of anything (ADHD, dyspraxia, AS, etc).

 

However, the school is talking about exclusion...but also says they don't have enought EP hours left for this year to refer him. The head has mentioned AS.

 

I'm sure I've read here recently that the parent can refer their child to the EP themselves.

 

Have I got this right? Any advice, please

 

Bid

[Kathryn]

I did this with L - phoned up the EP department myself and asked someone to come and assess her when the school wouldn't do it. Didn't you do the same with A? Maybe I'm remembering wrongly.

 

I don't parental referrals are part of official policy though - unless someone knows differently?.

 

K x

Edited March 14, 2009 by Kathryn

[joanne1]

I remember reading it aswell, although i am sure that whoever it was said that school didn't like it as it came out of their funding, with it being ed pysch.

 

Joanne

[JsMum]

 

 

 

If he just misses the Dx then he must have traits and features, this would be enough to get him the support for SEN, there doesnt need to be a DX so you could get your friend to ask the CAHMS to write in a report what parts of the Diagnosis he does meet, and the bits where he misses the complete DX.

 

You can defo ask for the ED Psyc, too, also if your friend is not fully convinced with the Decision that he JUST MISSES DX then she could request a second opinion from her GP, especially as the Head Teacher is in agreement he could be AS.

 

It could be that a list of symptoms need to be given rather than concentrating on a dx.

 

Your friend could write to the Special Educational Needs Department of her local Educational Authority and place key areas of concern her child has in his education, split it into developmental areas, so social difficulties, learning difficulties, mental and emotional difficulties, where does he struggle the most in the school day, that kind of thing.

 

Id also really really advise her to look at funding a private Ed Psych where he will be given a full indepth assessment and not bias to the LEA but supportive to the childs needs.

 

Youngminds and contact a family are the kinds of services I accessed in the past, they may know more of where else your friend can go.

 

JsMumxxxx

 

 

[cmuir]

Hi

 

My guess is that it is possible. I've managed to arrange for an OT to visit my son in school, despite the fact the school and EP should have done this. I did this by phoning Psychological Services, a dept within the education dept. It can be done and any reports from consultants etc may help to add weight.

 

One thing I would pick up on is that having a diagnosis shouldn't (I know in some instances it does) make any difference when it comes to receiving support. My son received support by way of a full-time learning assistant pre-diagnosis. In this first instance and child with SEN should be seen by an EP, initiated by the school. It sounds very much like someone isn't doing their job.

 

Best wishes.

 

Caroline.

[Kazzen161]

In our County you can telephone them and ask for advice, and there are also some drop-in sessions that can be booked. Once you have spoken to them, they may decide that a visit to the school is needed.

[call me jaded]

The new financial year begins on 1 April (no joke). Keep pushing the school.

[Karen A]

I did this with L - phoned up the EP department myself and asked someone to come and assess her when the school wouldn't do it. Didn't you do the same with A? Maybe I'm remembering wrongly.

 

I don't parental referrals are part of official policy though - unless someone knows differently?.

 

K x

 

I have mentioned self-referal to EP before.I think other people here have done it but don't know if there is a policy on it either. Karen.

 

[Karen A]

Hi.As JSmum mentioned another option worth considering might be to request a second opinion.It might be possible to obtain an opinion from another CAMHS professional.There is also the facility to ask CAMHS to refer to a regional specialist centre for a second opinion.If the professionals in our area had not been able to reach a decision re dx for Ben then one of the options was a referal to Great Ormand Street.The second opinion might be worth your friend considering if they feel that there are grounds to question the opinion CAMHS has given.

Karen.

Edited March 16, 2009 by Karen A

[Sally44]

As already mentioned you can go to your GP and ask for a referal to a clinical psychologist or other multi disciplinary team that can diagnosis these disorders (not just CAHMS).

You can also phone departments (ie. Ed Psych) and just make a nuisance of yourself.

You can look at the diagnostic criteria under DSM IV and make notes of where your son does/doesn't meet the criteria from your point of view and send them a copy of this.

You can keep a daily diary so that you have lots of evidence of behaviours and characteristics.

You can ask any other professionals (including school), who think he has characteristics of AS or ADHD to put that in writing to you.

You can also ask for a Statutory Assessment and that will mean that all professionals involved with your son will have to produce reports. You have to demonstrate that your son has complex and severe needs. So falling short of a diagnosis should not exclude him from the SA process, especially if he is showing traits of more than one disorder. You just need to list them all.

 

[bid]

As already mentioned you can go to your GP and ask for a referal to a clinical psychologist or other multi disciplinary team that can diagnosis these disorders (not just CAHMS).

You can also phone departments (ie. Ed Psych) and just make a nuisance of yourself.

You can look at the diagnostic criteria under DSM IV and make notes of where your son does/doesn't meet the criteria from your point of view and send them a copy of this.

You can keep a daily diary so that you have lots of evidence of behaviours and characteristics.

You can ask any other professionals (including school), who think he has characteristics of AS or ADHD to put that in writing to you.

You can also ask for a Statutory Assessment and that will mean that all professionals involved with your son will have to produce reports. You have to demonstrate that your son has complex and severe needs. So falling short of a diagnosis should not exclude him from the SA process, especially if he is showing traits of more than one disorder. You just need to list them all.

 

It's not my son

 

I've been there and got the t-shirt as he's coming up for 20!

 

Bid

 

[Sally44]

Sorry, sometimes threads get so long that I lose the thread!!

[Mum of 3]

Bid, it seems strange to be offering advice to you, when I've taken your advice from so many other posts! However, this is my take on the issue.

I self-referred to the EP last April on the advice of a health visitor, and attended a drop-in session (without G), where we outlined his behaviours

We spoke to 2 EPs, who asked if we'd considered the possibility of asd. We then focussed on looking at specifics using one of the diagnostic tests. The EP also observed G at school and talked to his teacher.

When they put all this information together, it was sufficient to warrent a multi-agency assessment, which is scheduled for July/August. We've also seen a Paediatritian (last August, with a second visit due next Thursday), to whom we were referred by our GP.

We still haven't recieved any advice or support with his behaviour, and neither has his school, and this is a problem, because all the diagnoses in the world won't give the practical help that's needed. It may help to access that help, but that's not much good if it takes over a year to get there!

All the advice and support I have had has been from books, websites and forums like this one.

I wonder if your friend might just end up back at the point they started at, with the EPs referring them to CAHMs for an assessment, and maenwhile it's practical, day-to-day help they need, and they need it NOW!

I know at the school i taught at, the EP was really stretched. She prioritised which children she would see in any given year from lists which all her schools submitted . This meant that only the most severe cases (usually the most active, aggressive, troublesome children) were seen. Others just stayed on school action and waited their turn, which often never came, as next year there would be a new intake, and maybe new children arriving from other schools, etc, who had more squeeky wheels!

As usual, it's all dependent on where you live, and what else is going on. I'm convinced that if we still lived in our old area, G would not even be as far on as he is now. Certainly, he wouldn't even have been noticed if he attended the crazy place I worked at, rather than the 'nice', little, village school he's at!

To sum up, yes, your friend can self-refer to the EP. It might also help to go back to the GP and outline all their concerns again (in effect, start the process all over again!), and ask for a second opinion, or a new route of enquiry. Meanwhile, try self-help, using all the wonderful advice available here and elsewhere!

[Sally44]

I know that there are mixed opinions about the Parent Partnership. But they can contact them and see what their advice is. I believe there is a set criteria that schools have to go through if they are considering exclusion. And I'm sure part of that is going to be 'what has the school done in calling in outside agencies'. So they need to check that system.

Being put on School Action Plus also means the EP has to be called in at that stage to assess. So if their child isn't at that stage yet they should ask for this stage.

They also need to check IEPs and make sure that behavioural targets are put on it - that should also involve the school asking the EP for advice on what kind of things to do. As you know, it isn't just about putting into place a structure of predictable outcomes for bad behaviour. It is about looking at what could be causing the behaviour and making adjustments. His behaviour could be down to some language or social skills that he simply does not have at this point.

They should write into the school and copy in the EP department with what is happening in school and the fact that the EP has not been contacted by school.

Asking for a Stautory Assessment means the EP has to assess. So they could start that process to force the EPs hand.

The National Autistic Society should have advice in this area.

Although this is more drastic action, they could look at Enhanced Resource schools in their area, as although all their enhanced resource places might be taken, there could be some mainstream places available. They might be able to move their child to that school where at least there would be more experience and expertise of ASDs and hopefully that would mean his needs would be recognised.

And of course they can look at getting an independent report. If they go along that route it is important to get an EP who is not employed by the LEA or NHS because those professionals tend to make recommendations up to the level of support they can provide. That isn't always the level of support the child needs. An independent EP is not restricted by her employers policies. They will assess and make recommendations of the level of support the child needs and will advise on various strategies or supports to use in school. Ideally you would want an EP who has experience of attending educational Tribunals as expert witnesses. EPs can also advise on whether a particular school is appropriate for a child. I don't know if independent EPs can diagnose.

However, although we are talking about the EP. The professional who deals with 'behaviour and social interaction' is the Speech and Language Therapist. So it might be worth involving them as well. So much of the behaviour can be down to problems with language and social interation problems eg. Semantic Pragmatic Speech Disorder, concrete/rigid thinking, literal interpretation of language etc. EPs (at least in our area) deal with academic difficulties, emotional response and recognition etc).

But they definately need to start writing some letters and getting everything in paper because if he is excluded, or they ask for a SA etc they need to have all this as written evidence and not just verbal exchanges. So always send in letters to school, and if someone phones them, they need to write a letter eg. "further to our telephone conversation about XXX, I understand that you are going to XXX and I have to XXX. Please reply if I have misunderstood."

 

[bid]

Thanks all

 

My friend actually thinks her son is just a pretty normal, sometimes rumbustuous, sometimes a bit dreamy, BOY!!

 

It's been the school who have said she needed to see CAMHS, etc, and so far all these professionals have agreed with her...I think she hopes that if the EP sees him, their findings will agree and stop all this stuff from the school once and for all!

 

Listening to some of the things her son has 'done' that the school are concerned about, I can't help but feel that BD in particular is very right about some people these days jumping on the idea of ADHD/AS when in actual fact maybe we have forgotten that a lot of perfectly normal small boys can be harum scarum/doolally as the mood takes 'em!

 

I shall get her to read through all your suggestions to see if she can speed up the EP process

 

Bid

[Sally44]

That maybe true, but if the school is mentioning exclusion, that seems to suggest quite severe problems?? Hard to know without examples. But whether the child is, or isn't - or is a bit of a fruit salad (ie. traits of some disorders but not enough to get a diagnosis of any of them), the school - if they are the ones saying there is a problem - should be contacting outside agencies such as EP or SALT to assess and observe.