Some Advice Please

[vannie]

Hi, I was wondering if someone could give me some advice please, Boy aged 9.

 

I have a feedback meeting tomorrow with Camhs, paed, phys ed, autistic trust, myself and school senco. I believe this is where they will give me a formal diagnosis.

 

He has had ADI and ADOS test which he refused to do, several meetings with Camh's where he has been uncooperative. They said at the last meeting if everyone agrees they are probably looking at Aspergers.

 

School referred us and have bought in all relevant agencies. I had a message on my answerphone today saying senco unable to attend as prior engagment???? I thought the whole point of the meeting was for school's sake?? She said they never informed her until 20th April, so why wait until today a day before the meeting to tell me, she has had 7 days.

 

They have sent a report, which I asked for a copy of and they are more or less saying that my son doesn't need any extra help. Why have they bothered to put us through all this and then back track when it comes to critical meeting.

 

I applied for DLA and was refused because school said he had no extra special needs than a normal child of his age??

 

I can't get my head around it. Can anyone tell me what to expect tomorrow and what questions I should be asking?

 

Many thanks for any help.

[Sally44]

Have you received copies of all the reports carried out by the various professionals? If not put that request to them in writing. Also involve your local Parent Partnership (through the council). There are different opinions about their affectiveness, but I found them very useful as they can come to all meetings with you and can take notes (useful as future evidence) and can make sure that everything said and done is legal. There are many examples of parents being given incorrect information or even lied to - not always - but the PP will be a way of ensuring that everything is above board.

When you get the reports read them to see if you feel they have identified all of your sons needs and have made recommendations against those needs. There are organisations such as the National Autistic Society, IPSEA and ACE that are there specifically to give advice to parents about educational issues. Use them. They have helplines and educational advisors and tribunal advisors as well.

From your post it sounds like he isn't receiving any extra help in school ie. he is not on School Action or School Action Plus?? However for the school to have called in those outside professionals he may well be on School Action Plus - check that. If he is on School Action Plus then they should have IEPs or MEPs. This is an Individual (or Multi) Education Plan. And Education does not mean just academic targets. So, if they are saying your son is doing okay academically and doesn't need help or support - then you can raise the difficulties of social interaction and play skills that have to be present to get a diagnosis. Those are needs which school should be addressing, and therefore those difficulties could move him onto SAP and IEPs if he doesn't already have them and the SALT is usually the professional who would address difficulties in this area - but some LAs are different.

IEPs/MEPs need to be SMART - the PP will tell you what that stands for. But basically it means getting the targets specific and measurable so that you can see if your child is making progress. These IEPs/MEPs can be your evidence that your child needs more support in school and you need at least 2 of them before you can apply to the local authority for a Statutory Assessment towards a Statement. But you are a long way off from that if school are saying he doesn't need support.

Contact the PP and the NAS to find out about training days they run about the SEN process. You need to start finding out about how it all works. It does seem like a maze to begin with, but the organisations I have mentioned can give you alot of advice and bring you up to speed. You can also post specific questions in this forum.

Hope that is of some help.

 

 

[Karen A]

Hi Is this the feedback meeting following assessment by CAMHS ?

If it is it might just be to talk about the outcome.

If so then if the SENCO cannot attend don't be afraid to ask for a meeting at a later point to include the SENCO.

I thought I would add that although as Sally says two lots of IEPS are usually needed before a Statutary Assessment would be agreed by the LA a CAMHS professional such as a psychiatrist does have the authority to request one directly if they consider there is a need.So do talk to them about any problems in school.The LA may not agree with CAMHS but it would be worth considering.Karen.

[Sally44]

I am not sure of the criteria for involving CAHMS, or if it is different between LAs. But if CAHMS is involved because of behavioural issues or mental health issues due to anxiety or stress, then I don't see how school can be saying that he doens't need any extra support. It will depend on what written evidence you get via other professionals.

In other posts there can sometimes be a difference in behaviour between home and school which school does not recognise as being their responsibility if the difficulties are only experienced in the home environment. But I don't know if that is an issue with you.

So I would start with getting written information out of all those who have assessed your son.

I don't know if you can appeal the DLA decision - I think you can but don't know how you do it.

I have heard of other children losing DLA because school said the child did not have certain difficulties.

There is another post on this website about DLA and the booklet to help complete it. You can include other professionals contact details if you think they have a better understanding of your child. There maybe a local organisation that can help you complete it as you do need to know the right words to use and sometimes it is not clear how your own child's difficulties fit in with the questions asked.

And, for future information, most parents do tend to end up acting like their child's personal assistant in having to ensure all professionals are on track and aware of dates of meetings, sending in paperwork etc. It shouldn't be like that, but it is. And so it is always worth checking any important meeting dates that the key players are aware and able to attend.

And from this point, it is essential that you always put everything in writing, and always get written answers. Paperwork cannot be denied or misinterpreted. Verbal conversations are easily forgotten or denied.

[Karen A]

I am not sure of the criteria for involving CAHMS, or if it is different between LAs. But if CAHMS is involved because of behavioural issues or mental health issues due to anxiety or stress, then I don't see how school can be saying that he doens't need any extra support. It will depend on what written evidence you get via other professionals.

In other posts there can sometimes be a difference in behaviour between home and school which school does not recognise as being their responsibility if the difficulties are only experienced in the home environment. But I don't know if that is an issue with you.

So I would start with getting written information out of all those who have assessed your son.

I don't know if you can appeal the DLA decision - I think you can but don't know how you do it.

I have heard of other children losing DLA because school said the child did not have certain difficulties.

There is another post on this website about DLA and the booklet to help complete it. You can include other professionals contact details if you think they have a better understanding of your child. There maybe a local organisation that can help you complete it as you do need to know the right words to use and sometimes it is not clear how your own child's difficulties fit in with the questions asked.

And, for future information, most parents do tend to end up acting like their child's personal assistant in having to ensure all professionals are on track and aware of dates of meetings, sending in paperwork etc. It shouldn't be like that, but it is. And so it is always worth checking any important meeting dates that the key players are aware and able to attend.

And from this point, it is essential that you always put everything in writing, and always get written answers. Paperwork cannot be denied or misinterpreted. Verbal conversations are easily forgotten or denied.

 

Hi.I think CAMHS are probably involved in this case in doing the asssessments for a diagnosis.

In most parts of the country although not all CAMHS psychiatrists are the lead professionals for diagnosis for older children and teenagers.

The team is usually sperate to any other support offered.So they may just be doing diagnostic assessments.

It is likely that support for behavioural or emotional issues would be provided as a sperate piece of work.It may well not be provided by the same team.

In my area CAMHS may consult school if there is a need.However currently the follow to diagnostic assessments does not have to include education input at all.

The criteria for CAMHS involvement varies from area to area.However CAMHS is part of the NHS.So staff are not answerable to the LA at all.

The LA may request CAMHS support but ultimately it is usually up to CAMHS staff how involved they wish to be.

CAMHS are different to most of the other services [OT,SALT] in that there is usually no criteria for CAMHS input being documented as an educational need.

CAMHS are our major priovider of support for us but it is not included in Ben's Statement.

 

If CAMHS are involved for emotional or behavioural issues it is very possible that there might not be an educational need.The majority of CAMHS work is with children and families.Not all children will need support in education.CAMHS is really the mental health service for children and teenagers.So the criteria are the same as for other medical needs.Not all children with asthma or diabetes would need support in education.Mental Health needs are the same.

Also many parents who work with CAMHS would rightly wish to keep the work confidential.So they would only be involved in school if that is what the parents and child want.

Ben's therapist has never had any contact with school because she prefers to keep her work with Ben separate.

 

Re the DLA it all depends where in the process things are.

There are options to ask for a review,appeal or reapply.

Most people appear to be being turned down first time at the momment.

We asked for a review and were succesful so it is worth not giving up on it.

NAS now have a benefits adviser who will provide support re DLA.

The NAS information is also very good

 

Edited to add.CAMHS usually do provide written recommendations as a follow up to diagnostic assessments.It is recognised as good practice.

However they may do that at a later date.Often parents cannot cope with lots of information at the time of diagnosis.

When we got a diagnosis of AS for Ben I was capable of little more than give the psychiatrist a hard time.

Edited April 29, 2009 by Karen A

[Karen A]

The list of contacts for information regarding DLA is on this link in case it is helpful.

http://www.asd-forum.org.uk/forum/index.php?showtopic=20218

[Karen A]

The list of contacts for information regarding DLA is on this link in case it is helpful.

http://www.asd-forum.org.uk/forum/index.php?showtopic=20218

[Karen A]

http://www.nas.org.uk/nas/jsp/polopoly.jsp...560&a=15409

The welfare rights service can be contacted via the NAS autism helpline.See this link.

[vannie]

Thanks everyone for all your advice. I have had the meeting and they have diagnosed aspergers and are sending to OT for assessment on dyspraxia. They said the reports of all the tests and their diagnosis will be sent to all. They agreed that the school should have had a representative there and felt for me. They said that H is on action school +, and believed that the school would not support a statement but I could ask for Stat Asses if I beleived he needed it. They said he has high intellect and was coping well at school, even though they are aware that he isn't at home the statement was for educational needs. I have now been discharged from CCDS. That's it 6 more sessions with Camh's and they will tell BAT to get in touch with me. I don't really feel any emotion at the moment, but I haven't had a chance of sitting down yet. I am so thankful for this site, they gave me no leaflets or information just a photocopied piece of paper with Aspergers ticked. I will be looking through the site later for info and will probably have loads of questions to bombard you with. I hope you don't mind. Thanks again for all the info so far.

[Karen A]

Thanks everyone for all your advice. I have had the meeting and they have diagnosed aspergers and are sending to OT for assessment on dyspraxia. They said the reports of all the tests and their diagnosis will be sent to all. They agreed that the school should have had a representative there and felt for me. They said that H is on action school +, and believed that the school would not support a statement but I could ask for Stat Asses if I beleived he needed it. They said he has high intellect and was coping well at school, even though they are aware that he isn't at home the statement was for educational needs. I have now been discharged from CCDS. That's it 6 more sessions with Camh's and they will tell BAT to get in touch with me. I don't really feel any emotion at the moment, but I haven't had a chance of sitting down yet. I am so thankful for this site, they gave me no leaflets or information just a photocopied piece of paper with Aspergers ticked. I will be looking through the site later for info and will probably have loads of questions to bombard you with. I hope you don't mind. Thanks again for all the info so far.

 

<'> <'> <'> I don't mind at all.Ben was only dx AS a few months ago.We are still up and down.

 

I will not bombard you with more information there is plenty of time.

Do come back with lots of questions that is what I have been doing for three years and nobody is sick of me yet.....well they don't tell me.