Help needed - annual review on Thurs....

[shamu]

I haven't been around for what seems like forever, and I feel bad coming here begging for help at the last minute but things have become so impossible I need some hand holding and help to get through the next week...

 

In a nutshell, we have reached the point where we are requesting a residential placement for our son. He is 8 and a half, extremely low functioning (around 12-24 month equivalent), very active (probable ADHD but failed a trial of Ritalin), requires continuous and constant suoervision at home and in the community, effectively non verbal, not toilet trained and making very limited progress at the LEA SLD school. We believe he will benefit from a waking day curriculum and our Paed agrees as does an independent psychologist. School believe they are fully meeting his educational needs, but no attempt had been made to address the wider picture - we have a 6 year old and an 18 month old and we believe their safety is out at risk when ds is at home with only one adult. His sleep patterns are erratic and we are exhausted, I haven't been able to return to work following maternity l eave as I work shifts and in frontline emergency work, we have no family support locally and have a social care package that doesnt cover the hours where we have three children to one carer, let alone provide any meaningful respite....

 

Has anyone any pointers of the key issues to raise at annual review that act as deal breakers in our request for residential placement? We believe that ds now needs a waking day curriculum, provided in a asd specific environment but I'm worried that they'll ask us to back up our request with solid evidence....

 

I'm falling apart under the strain as we have a huge battle with social services going on at the same time so any help will be gratefully received. They don't seem to understand that the last thing I would do is send my beautiful boy away to "get rid" of him but that's what social services believe and I'm petrified education are going to say the same...

Edited July 8, 2012 by shamu

[Sally44]

I don't know exactly what would support a waking curriculum. Often it is about 'educational needs' needing to be continued during those hours.

 

What I would say about the Annual Review is that you put your case forward, and then if the LA amend or not you have a right to appeal. And you probably will need to go to a SEN Tribunal to get such a placement.

 

Do you have a school in mind, have you and your son visited it and has he had a trial there, and do you have an offer of a placement in writing?

 

After the AR, when the LA amend, or don't, you then have a timescale within which you have to lodge an appeal.

 

I would start thinking now about what independent professional advice you would need to secure such a placement and who you would like to assess your son and maybe visit his current school.

 

Don't say anything to the LA about getting professional reports. Just leave them to get on with the AR process.

 

Then arrange for your professionals to assess him so that their reports will be submitted just inside the deadline for submissions to SEND, so that the LA do not have the time to re-assess your son before the Appeal.

 

I think that evidence of how he behaves at home and in the community is going to be useful. I did film my own son and sent in a DVD for the Panel to look at. However it is about the 'funding' of the Statement, and I think that the legally binding part falls on the LA to provide what the child needs [from an educational perspective], and I think that is why the evidence is usually based on an 'education' need rather than a social care one.

 

But I think you need to clarify that via somewhere like www.nas.org.uk or www.ipsea.org.uk or www.network81.org or www.sossen.org.uk

[Sally44]

We are trying to get respite funding for our son. And we are trying to get it supported and funding via health, social care and education. Everyone is saying verbally that he and we need respite, but no-one wants to fund it!

 

I would talk to the independent educational psychologist you are thinking of using. They should have experience of writing such reports and recommending a waking hour curriculum.

[bed32]

I'm not an expert of course but it sounds as if you are in a difficult situation. As I understand it if you want to get the LA to pay for the residential placement then it has to be on educational grounds. So not only does he need a "waking hours" care but also that there needs to be continuity of care across the day. I think that could be a very difficult case to win.

 

The alternative approach would be to seek a more specialist placement in an ASD specific independent school that is residential only. It should be possible to make the case that his current school is not meeting his need and so he needs a more specialised placement. If that placement is only available in a residential school (as I think is likely to be the case) then that effectively bypasses the question.

 

There are a number of organisations out there that provide a free helpline - try SOS!SEN or IPSEA - they will give you better advice than I can/

[Sally44]

You also say he is at a SLD school? That stands for severe learning disabilities? It is also autism specific? If it isn't then you can say at the AR that he is not in a school with similar peers. And if the school is not autism specific, the chances are that none of the teachers in the SLD school have any qualifications for teaching children with autism, although they might have additional qualifications for teaching children with SLD. That is worth finding out by asking the school in a letter eg. how many children on role have a diagnosis of ASD, how many on role have ADHD, how many of the teachers have an additional qualification for teaching children with autism, what autism specific teaching approaches or strategies do they use, do they use those strategies as whole class ones, or just with your son.

 

Does your son get speech and language therapy? How many children in his class are none verbal, how many in his class have toileting problems, how many in his class have sensory issues [does he have sensory difficulties, or a sensory processing disorder diagnosis?

 

Does he have dyspraxia? Does an OT see him?

 

The above are a load of questions you need to ask. But you don't need to ask them now at the AR. At the AR you can just say that you do not think the school he is at is meeting his needs because it is not autism specific [which I am assuming is the case if it is classed as SLD].

 

I'm saying there is no need to get all this information now, because the LA is very unlikely to agree to pay the extra amount needed for him to be in an ASD specific school and be residential there. You can say at the AR that you think he needs to be in an autism specific school and that he needs to be residential, and you can ask the EP NOW what she thinks about that. You can phone her and talk with her.

 

Who has the school invited to attend the Annual Review? Have you received reports from the school, EP, SALT etc? You are supposed to receive those 2 weeks before the AR. If you haven't had them yet ask the school for them now. Everyone can email them to you.

 

So I would not get too worked up about the AR. You need to think ahead, about 6 months, to when you have the actual Appeal. So you have around 4-6 months from the date you lodge your appeal to get your case ready.

 

Does your local authority have any special schools that are specifically for children with autism who are non-verbal and working at a level that your son is?

[shamu]

Thank you for all your advice and support. It was very helpful.

Our review was today and we saw video footage of ds at school acting like a completely different child to the one we look after at home . Physically withdrawn although co- operating and with an adult standing over him at all times. Something they never admit to in writing but agreed with today, so at least we can now battle social services with evidence he needs one to one at all times...

The outcome is that his case will go to panel and he willbe reassessed. So that will take 6 months and the outcome of that is likely to be that his currents schoolis fine So then we can appeal. This will take a year at best and I don't know if I canon age to hold it together that long. I have given up everything to try to keep our family together and as normal ad possible and now it looks as if that chink of hope is not going to be realised ever.... Feel deflated and let down. I could have coped if we'd looked at appealing tomorrow but waiting six months before we can do that feels like a mountain that we can't climb....

[Sally44]

Can you get a copy of that video footage?

What was the purpose of the school doing that video? To prove they can manage him?

You can also video him at home.

 

Are they arguing that his bad behaviour is happening at home and therefore it is something to do with the home environment?

 

There is lots of documented evidence [which Clinical Psychology put in a letter for me about my son], that shows that children on the spectrum can have a jekyl and hyde type behaviour. My son was also good in school. But he was vomitted there due to anxiety. But he was so fearful of being told off, and of being punished, that he tried his best to do what they asked of him. When he came home he did not speak, he began to show signs of anxiety and stress, he could not sleep, he was often angry, tearful, frustrated. He refused to attend school. He attempted suicide. And through all of this the school continued to say they had no concerns. Eventhough he was 10 and could not read and write, and eventhough he did not attend their school for nearly a year.

 

We went to a Tribunal, and we won our case.

 

If you are feeling so bad yourself. I would suggest you go to your GP and explain how bad you feel, and see if there is some medication they can give to you. It does help.

 

My son is now in an ASD specific school, where they have speech therapists, occupational therapists and an educational psychologist on site. He is doing well there. He also has a specialist dyslexia teacher [as he has severe dyslexia and dyscalculia too].

 

Due to all the anxiety he had to live with for so long, he also has a diagnosis of an Anxiety Disorder, which is mainly social anxiety and OCD. He is on medication for it. And we seem to have finally found something that is helping.

 

But the OCD was driving all of us insane, and hence my being on medication. And hopefully both my son and I will be off it asap.

 

Don't give up.

 

We are also dealing with Social Services and trying to get some respite from them. The Social Worker seems to be pushing me to say that I can no longer care for him [as that would become an emergency that SS would have to deal with]. I don't think I am at that stage. And I have spoken with experts to make sure that my saying that does not mean I would have problems from social services if I did ever have to say that. So I would speak with someone like the NAS, or IPSEA, or the Centre for Independent Living [you can email questions and they respond by email - or they have a telephone service].

 

I don't know if you feel you could take him to your local childrens SS and say you are not prepared to take him back with you and they have to sort something out now and leave him with them. This seems to be the stage people have to get to for SS to take responsibility for a child.

 

Alternatively you have to through the SEN Tribunal process. And you need to gather as much evidence as you can to prove that the school of your choice is the only one that can meet his needs. If he is showing alot of behaviours at home due to not coping in school that will be believed by the Tribunal Panel, because they see lots of cases like yours.

 

You may need to get an independent Educational Psychologists report and they may need to come to the tribunal with you as an expert witness. they would need to visit his current school and the school you wish him to attend. It will cost money.

 

Are Clinical Psychology and CAHMS involved. If not ask your GP to refer you to them. Ask to be referred to a clinical psychology team for children with autism - the same for CAHMS. You need them on board.

[oxgirl]

I responded to this thread yesterday, but my response has disappeared! Strange:/

 

~ Mel ~

[Sally44]

That is because the OP posted the same post twice, and you answered the other post.

Edited July 13, 2012 by Sally44

[Sally44]

Another thing we did was to keep a daily diary, because you can't video your child 24/7. I did a video over a period of about 5 days. I used a digital camera that I had set up and left in the front room for some days, so that he got used to it being there. And then if he became upset and started saying things about how he hated school, I would go over and press record whilst he was not looking.

 

But you also need a daily diary of events. It gives the Tribunal Panel an insight into daily events in the home and out in the community. My son was saying that he could not take school anymore. He was refusing to get dressed, refusing to get out of bed, refusing to eat, refusing to leave the house etc.

 

I would get clinical psychology and CAHMS involved because you need to ask them "how much force should I use to get my child into school?" And you can ask them to put their advice in writing. They told me that I should only use gentle encouragement. I had asked them because I was uncomfortable with the amount of force I was having to use. I believed what my son was saying, and I could see he was becoming mentally ill. But their letter also covered us incase the LA involved the Educational Welfare Officer.

 

And once you have that advice in writing that is what you stick to. Don't force him. And if he remains at home that is further evidence that the placement is not meeting his needs.

 

Do you have any school in mind, and have you visited it. You would need them to have seen your son, and they may want him to spend a day with them. You need them to offer your son a place in writing, and for them to state that that placement will be kept open for the next 6-9 months [depends when the Tribunal date is].

 

I really do sympathise with your situation. But remember that many parents have been through this, and others on the forum are going through it at the moment. If things are really bad at home, you just need evidence of that via the daily diary and video. The Tribunal Panel are independent. The LA have no control over them. And they will ask the LA some very searching questions.

 

At the moment it appears that they are just saying that you are to blame for his behaviour at home? There is a reason for the behaviour. You are not going daft or mad, you are dealing with what sounds like a very unhappy child.