Emergency statement review?

[claw2]

I had a meeting with school yesterday and they have said that it is totally unacceptable that ds is self harming, not eating in school and has extremely low self esteem and that he cannot continue like this.

They would like to facilitate counselling and OT input. Ds's statement was issued in July 2013 and AR is in April. School are saying ds cannot wait this long.

Ds attends indi school and counselling and OT input are not included in the price, it will cost extra.

School have said they will get back to me as to how they are planning to do this.

Is an emergency review of ds's statement, the only way?

Thanks Lougle.

I don't know what CAMHS are playing at, before signing ds off from his previous school, part of the plan to try and get him back into school, was the offer of therapy to deal with ds's anxiety and self harm. They then signed him off.

He has now returned to new school, his self harming and anxiety has increased again and they are declining therapy. The fact that ds is attending, is viewed as 'success'. As CAMHS said 'their involvement was for a successful return to school'. Where as it should be for ds to successfully 'maintain' a placement.

Anyhow, thank you for your advice, very helpful.

Claw. Is the indie school a wealthy one? If it is, could you ask them for a short time bursary to cover the cost of any immediate treatment. And then you follow up with getting the LA to payup/takeover. Obviously the school may not like it as it could be a blank cheque - especially if the LA got wind and so wriggled out of their duty. But if the school could fund a short-time block of sessions? Depending on the type of indie school it is (and their wealth) they might consider it.

Hi Claw

That's a bit unexpected of school as he's been like this since he started with them.

Having school onside with you is a really good outcome. It's now Claw+School's word against the LA, ionstead of Claw trying to battle on with no support.

I was told by very senior person in IPSEA that you can have anything (his words) written into a Statement if it is required. He cited horse-riding (which I'd see as a non-educational need).

There's no guarantee that what school is suggesting will help the situation - that's why you need an early review.

I think it's time you investgated other provision in the specialist sector as it may be that he will need much more than he's currently getting.

I'd encourage school to contact the LA and CAMHS - it'll have more weight coming from school.

It sounds like a really bad situation but actually it's just the same continuing problem but this time, hopefully, you'll have a ally in the school.

Best wishes

Towiella, I will wait and see what they are suggesting, I have no idea if they are wealthy.

Hi Wet exactly its been an ongoing problem for the last 4 years, with 2 previous schools saying we do not have a clue what mum is talking about, she exaggerates needs, lets report her to social services etc, etc. How dangerous ill informed people can be.

So, yes a real break through. Ds has been going swimming in school, or not as the case is. They have seen the sores on his body, he has told them himself he scratches. They have seen how distressed he gets and cannot access activities such as swimming, eating etc. He will not accept praise at all and often ends up in tears on a daily basis.

His class teacher has given CAMHS a right mouthful, told them he thinks ds is 'depressed' and that they cannot just leave ds like this. CAMHS are fence sitting again as usual.

Go for the review. As a professional I would say that a statement is a legal document. Anything that is specified MUST be adhered to for example if the statement says he needs weekly councilling sessions then what ever setting your son is in they have a legal obligation to provide it. It doesn't matter whether you move into another authority, to a specialist provision or to a new school the statement will go with your child.
If a review has been requested, then this is because school either: want more money for more support (it sounds like your son needs this) OR (unfortunately more likely) they would like to change the setting to a specialist/ therapeutic setting. Either way from a parent point of view, I would still agree to the review,

1. ultimately the school is struggling to meet our sons needs either because they are unable or unwilling to. You know what is best for your son and you have a say in the final outcome of the statement and can appeal the decision. You have the right to visit any other schools (specialist or mainstream) which you think May be able to meet his needs. They CANNOT legally refuse to take a child who has named them in a statement. I do not know the school and cannot comment on how inclusive the school is; uou can judge whether they simply need more resources in order to cater for his needs, whether they genuinely believe he needs more than a mainstream can give and needs a therapeutic provision geared to meeting his complex needs, or sadly are trying to get him out without having a permanent exclusion on their books (which will affect their ofsted grading) Either way go for the review it can only mean more support, it sounds like school are at crisis point and may need mor wfuidence themselves. Remember you know best - stand up for what you believe!

Thanks Sebum, at the moment school haven't suggested anything, other than it is totally unacceptable to just leave ds the way he is, they are saying he needs counselling and OT input and we need to do whatever is necessary to facilitate this. Review is due in April, school are saying ds cannot wait that long.

Ds attends indi ms school, who specialise in HFA, with specialist provision on site ie indi SALT, Counsellor, OT, but the package agreed with LA only covers the cost of SALT. So ds does not have access to the OT and counsellor provision.

School have been brilliant, albeit they do tend to rely on me for a way forward (which isn't a bad thing).

I think I have found the way forward, after this thread, it would make perfect sense to ask LA nicely for funding NOW, with proviso April review still take place. If they refuse, request emergency review.

The best outcome would be for LA to provide funding now and sort out getting it written into statement at review. The worst outcome would be them refusing to provide funding at emergency review and having to appeal, as this could take forever.

Maybe he can't cope with the school environment? If you are pursuing the CAMHS route, make sure they understand ASDs so that they can identify the difference between 'depression' as a stand-alone mental health problem and depression as a consequences of a disability.

Thanks IE, its the same vicious circle, I think he can cope with the school environment with the appropriate support. He has made some progress, considering where we started from.

I am finding CAMHS an uphill struggle. They did provide almost 2 years of therapy and yes ds is back to square one, so they are thinking the therapy wasn't very helpful to ds. My argument has been it wasn't very helpful to ds as he didn't have a supportive school at the time and the therapy provided was supplied by a trainee psychologist.

The class teacher did point out to them, that in all his years of teaching HFA, he has never encountered a child with such low self esteem, incapable of accepting any form of praise and he thought his self esteem issues were not ASD related and he thought that ds was suffering from depression.

CAMHS then pointed out their role was only for 'a successful return to school' and ds is attending, so therefore a 'success'. Despite being told that ds is still very anxious, still self harming, still very low, still unable to eat in school, getting very distressed and that school feel they can only do so much to help. Im not sure I want their involvement if this is their attitude.

I think as some point it is likely to turn into a health v educational funding and health/CAMHS are obviously very reluctant to fund. At the moment CAMHS seem quite keen to pass ds over to indi psychiatrist, I think I might be better doing that and keeping CAMHS 'onside' ie at least agreeing that ds does need therapy.

Yes unfortunely it may turn into a education / health funding row I feel. A statement review almost always refers to a change in provision or application for more finding / support. Some BESD statements (behavioural emotional and social difficulties) do include a provision of councilling or therapy bit this is usually if they have a diagnosis of PTSD or attachment difficulties, not a medical diagnosis of depression. I think a statemet may only deal with the ASD side of things and more adult support is the likely outcome however this doesn't sound like what he needs. It's difficult, in September 2014 there will no longer be a BESD part to the new statements instead this will be called mental health which seems to be more sensible (didn't think I would agree with any of Goves changes but still...) your son would be likely to fit to criteria communication and mental health.
I wonder whether it might be worth going to your GP? Cry scream do what ever until you get re referred to CAHMs yes, their piece of work might be done once he was integrated into school but he still clearly has issues which need to be addressed.
In the mean time have the review if the school pushes an alternative provision, go and have a look. It isn't a failure on anyone's part. I have twins, both statements for BESD one is in a specialist setting and is thriving. In some ways I think he gets the better deal than the other one who is still in mainstream. The staff are highly trained and everything they do aims to build self esteem and emotional awareness they really are amazing. It was a difficult decision to make and I felt backed into a corner at times but special was the best decision I made for him. Good luck and keep us informed

Thanks Sebum, CAMHS are still involved, ds's case is still open and they are involved in an 'advisory' role. This amounts to they do nothing, but sit through meetings with the school and I.

I have asked them for therapy for ds, they declined. School have asked them for therapy, they declined.

I could probably insist on therapy and put the request in writing and see if they would decline in writing, after being told of ds's increasing anxiety, self harm etc. However I am a bit worried, that this could lead to a brick wall if I push them into a corner ie he doesn't need therapy, then I would stand no chance of getting ds therapy elsewhere or written into his statement.

Changing BESD to mental health surely excludes many children whose behavioural or other difficulties don't stem from mental health issues. Including those with ASD issues and no diagnosis.

Is that to fit with Timpson's idea of behaviour not being a SEN?

I hadn't heard about that change. I'll google it.

Claw - DS1 has anxiety related to ASD/SpLD and so has OT for sensory integration, Physio for Alert Programme, in-house counselling specifically to help him cope with diagnosis/difficulties and lots of mentoring/pastoral care written into his statement.

I chose a school that did all three of his main difficulties - ASD/SpLD/anxiety. Now that he is attending the school and as he is nearly 13, I have come to realise that SALT and OT provision is not the be all and end all. It just seems that way on the run-up to tribunal because indi placement is so often 'won' on the basis that ms can't provide this. The placement as a whole has the biggest impact. Are you sure that his school is 'low stimulus' enough for him? If you do want him to stay there, it might be worthwhile giving the impression that you have decided that he needs a expensive indi specialist school rather than indi m/s as he clearly needs a more nurturing, low stimuli environment with a similar peer group (ie no EBD).

At tribunal, the LA offered an in-county indi ss that offered identical provision as the parent named OOC indi ss but this was rejected on the sole basis that the school accepted pupils that 'externalised' stress rather than a bunch of anxious internalising aspies.

If all kids at the school are able to see the in-house counsellor (for free or is there additional cost?) then this would include DS.

tbh honest I would focus on getting OT provision to work on the causes of his anxiety. Sensory issues are well understood to be part of ASD.

This is not 'normal' anxiety/depression and I deliberately didn't go down the CAMHS/mental health route. Despite his behaviour driving me to despair at times, I knew that psychological theories that blamed parenting or encouraged him to think that there was something 'wrong' with him would make things much, much worse. What do you think counselling with CAMHS will achieve?

imo counselling that doesn't explicitly teach coping mechanisms is counter-productive.

Hi Keep, ds has never had any actual input from SALT, OT etc, he has been assessed, but no recommendations followed until now. He has attended school for 4 years with no support in place at all, not even a social skill group. My thinking is ds needs to have all of his needs addressed for it to have an impact. Although as you point out, its not the be all and end all, its a start.

Classes are smaller, about 12 to a class. However ds is having exactly the same difficulties as before.

The 'in house' provision is actually indi experts who school employ. So part of ds's 'package' agreed with LA was for SALT, but no OT or counselling. No other children can access counselling, unless its part of their 'package'. Class teacher told me it is very expensive and requires extra funding.

I not keen on counselling from CAMHS. Ds has been very open with me about his self harming, he says he scratches his skin when he is worried or sad and when he scratches or hurts himself he feels 'invincible'. He also says that he feels 'he doesn't fit in' at school. I think ds would benefit from counselling to help him comes to terms with how he may or may not be different and find a sense of identity and also to help to find a different form of expression to self harm.

Ds does have extremely low self esteem, I feel this is secondary to his other difficulties and his self esteem and acceptance of achievement or praise will not improve until his other difficulties are addressed.

Can you get a referral via your GP to the Maudlsey Autism clinic in Camberwell? They really know what they are doing!

I honestly feel your local cahms (as you know I was quite local to you geographically) haven't got the skill set to help. mental health professionals are imho the most arrogant of the lot and the least likely to ever admit a knowledge deficit, even though MH is the newest and least understood of all health sciences. They suffer from "wee dick syndrome" in my opinion.

With your DS's history I really feel it's worth refusing to leave the GP's office until you get a Maudsley referral.

In your shoes I'd take the school offer to take the lead on the emergency review with both hands. Remember this time it's not just "MUM" saying he needs this support, it's the professionals which means everything in your neck of the woods. Let school take the lead in LA discussions this time round - you honestly have nothing to lose.

I'm not concerned about you losing funding for his place as his history of failure in the state mainstream system is so strong. School are saying they can help him, they just need additional resources to do so. It's also quite common after a change of placement for statements to need updating. That's what a statement is for ffs! I see this a good thing for you, I really do.

Hi Bochead, school haven't actually suggested emergency review, hence my question is this the best/only route etc. To be honest class teacher is saying is unacceptable to just leave ds like this and waiting for review is 'too long' and 'we have to make sure this happens' etc. I don't think he actually understand the process involved to make this happen and school seem to be relying on me to lead the way and make 'suggestions'. I am more then happy to just make 'suggestions' and let school lead the way.

I really don't want to do any 'self referrals', CAMHS feel that ds has been assessed to death and I agree. Ds doesn't respond well to assessments, they just cause him further distress.

Ds's needs or difficulties have been well and truly identified several times, there is no point repeating the process again and again. However although assessed to death, no recommendations have actually been followed. We know what his needs are, lets just get on with supporting them!

Im not concerned with losing the funding for his school placement, just a bit worried of losing CAMHS 'backing' if I push them into a corner.

How are things with you?

Homeschooling right with the help of an online school. It's lovely!

DS is slowly learning to read at last, and I'm seeing more and more the happy little chappy he was at nursery, rather than the emotional wreck he became at school. I feel like I'm being given MY child back again iykwim. He's part of a really nice homeschool group one day a week, where he's making genuine friends and feels welcome.

Next term I intend to enroll him in a few more regular mainstream leisure activites such as swimming lessons etc but I'm not anticipating any issues.

The new LA have said they'll come round to assess him, but they don't seem in any hurry and tbh after seeing the improvement he's made this term I refuse to put him in any form of mainstream ever again. They either offer a specialist unit that know what they are doing, or we just keep on doing what we are doing at home. I've put a request in writing for them to name the online school on his statement with SALT/OT at home or clinic.

I know they are monitoring his progress as this is a novel idea for them too, and the special units are all at full capacity right now. I'm in an LA that does fund home ABA programmes though, & what I'm asking for is so much cheaper than that or even mainstream + 28.5 hours TA (what he was on when we left) that initial discussions have been reasonably positive iyswim. At least they aren't going out of their way to make our lives hell in the meantime.

Cost wise it's actually cheaper than mainstream was for me, as I'm not paying for outside therapy to help undo the emotional damage of school (nhs cahms just took schools side so I had to go private before DS got to the point where he did summat silly iykwim). If we'd stayed where we were I'd have had to go through a failure to implement his statement legal process + pressed charges against his TA for assault as SS refused point blank to let me remove from that school. The timescale for that to happen would have left him broken beyond repair as he was in a right old state when we exited their drama stage left in the summer.

From my perspective I FINALLY see that I'll be able to earn some sort of living once more soon as I'm not always having to firefight a school induced crisis or plan for yet another dumb meeting. Also DS sleeps 4 hours a night now, sleepwalks & bedwalks less so I feel less sleep deprived. I'm working through ideas for some sort of home based business. It'll be part-time, but enough for me to feel like I have some sort of life of my own back iywim. It's been years since I've felt like a proper Mum and not a therapist, and I'm really, really lapping up the feeling as it's such a nice one.

Our whole life has gone from hell on earth last term, to really quite pleasant now. I also see that DS has a future now, whereas if we'd stayed where we were the outcome was set to be fairly horrific. (teen prison or suicide stat).

That is lovely to hear Boc

I know the feeling all too well, I often feel more like a SENCO, than a mum!

Home schooling isn't something that I have ruled out, I just think ds first needs to opportunity to access a school with the appropriate support in place. I will be coming to you for advice if I do decide to HS!

I suppose I just got to the point where playing the game via the standard route (asking nicely, tribunal, attending all meetings and being polite etc) was failing my child totally and was FORCED to try something different before it was too late.

I shouldn't have had to move 500 miles away just so I could maintain a decent bedtime routine with a child who has a diagnosed sleep disorder for example. (Our old SW had a thing about turning up unannounced at bedtime even though it was obvious it was upsetting DS). What shocked me was that the old LA didn't stop their nonsense even after we'd moved for a while.

Home schooling was always an absolute last resort, and DS still needs specialist input. Taking him out of school has not cured his core disabilities, it has however removed a whole layer of emotional stress for him. It throws up a different set of problems, but ones that based purely on his needs/my finances which I much prefer dealing with.

It's shocking how much time/money/emotional energy the caring carrot brigade take out of you at the expense of your child/normal family life over the period of a few years. (Anyone who has been to tribunal will know what I mean!). Caring for a child with SN is harder work than the norm anyway and as a single parent I was starting to get to the end of my energy reserves.

I'm only human and regular 72 hour no-sleep stints (cos school had upset him!) for years on end with no respite was starting to take a toll on my physical health. Now I have the energy to be both therapist/teacher and happy Mum.

I know what you mean, as soon as you think you are over one hurdle, another pops up and there isn't much respite in between. At least now some of the pressure has been removed and I have to say you sound so much happier.

Right. School are right and actually there are safeguarding issues here as the anxiety is reducing their ability to keep him safe. As an indie school, they can more easily give you notice to quit so it's great that tbey sound so caring and ready to kick ass.

Ask for an early AR. This placement is not catering for his needs and they have proof. So you need a rep from LA there. The school need to push for this as they will listen to them more than a parent (sad but true). At the meeting say what you want which is counselling and OT. State that the alternative is Southlands College or Another mega mega expenive indie. The school need to say they cannot continue with his education without this provision as they cannot safeguard his welfare and needs. You need to be in cahoots with the school and between you do a pincer movement. The alternative for them is over £110,000 per annum as opposed to say thirty. Got to be more cost effective.

Can you possibly scrape together the money for an observation of him in school by a clinician. I have a brilliant clinical psychologist I use who charges £60 per hour for counselling. I'm in the SE if that's any use to you. PM me if you want her name. Also I'd love to know the name of the school as sometimes we get kids that aren't suitable for our school due to speech and language needs and I'd love to be able to reccommend somewhere but understand if you don't want to say.

Flapping, I wouldn't go as far as to say safeguarding issues, he self harms by quietly scratching his skin off, usually according to ds under the desk so no one can see. He will also engage in this skin scratching behaviour at home when stressed about school and its pretty difficult to stop to be honest, unless I accompany him to the bathroom and let him sleep in my room and watch him 24/7 etc.

The best I can do is reduce it by using distraction and keeping a close eye on him when the scratching gets really bad. I would be too scared to raise it as a safeguarding issue, as he also does it at home. Alternative when out of school it stops completely.

During what I can only describe as a 'mental breakdown' last year, he was signed off from school and subject to a safety plan following emergency mental health assessment in A&E. Child protection were previously involved (long story) but I was reported by LA for all the wrong reasons and I had a terrible experience with them to start with, although they did come round and was eventually very much onside and closed the case. Safeguarding is a whole can of worms, I would rather not open.

I could possibly scrape money together for an observation, im just debating whether previous indi EP who was involved and made recommendations would be money better spent. I have asked school if they plan to involve an EP for input, but haven't received a response yet

Flapping I have tried to pm you, however I keep being taken back to the top of the page! PM me if you can!

Claw sorry i haven't read the whole thread but can't school just formally write to the LA and request the LA increase the funding to cover the OT and counselling support which is available on site? If school recommend this as essential to the success of the placement / say cannot meet need without it (but with it think the placement can be maintained)/ make it clear the request is to meet educational need (because anxiety, self harm etc interferes with his ability to learn) and see what LA response is?

LA will then have to either agree, call a review or put pressure on CAMHS to see him.

Its obviously in your interests to get it all written into a statement but the immediate issue may just be to get it funded as if the LA funded it voluntarily outside the statement for 4 months then that would give an opportunity for them to review it after 4 months which they may prefer to having it in the statement.

The school can always say if the LA won't agree to cover OT / counselling at school will require the LA to bring forward the review?

It seems to me it will be clear to LA that if this placement fails they are looking at a yet more expensive placement so there should be room to negotiate.

I would personally see if you cannot get School to advocate on your DS behalf and see if you can keep out of it until April. Just because of the history.

The alternative would be to ask GP if will refer for second opinion to a different CAMHS or to consider medication for anxiety / depression. I honestly don't know if this is possible but maybe you can get referred to a psych with specialism in ASD as a second opinion

Hi Agnes, that is what I decided the best option would be, funding now, if the LA agree to it and written into statement at review in April. I am more than happy to take a back seat and let school deal with it.

School have been absolutely brilliant, although they do tend to rely on me to take the lead and make suggestions to them. Which isn't a bad thing, I am happy to make suggestions and work with them behind the scenes.

However if LA don't agree, emergency review? If they will not agree informally, I really cant see them agreeing at emergency review and obviously this would lead to appeal, tribunal and delay, which I would rather avoid if poss.

CAMHS have declined therapy by both myself and school verbally on the grounds that ds has already had almost 2 years of 1:1 therapy and doesn't appear to have found it particularly useful and more therapy and being taken out of school could result in making him feel more 'different'. They were keen on the idea of 'in house' therapy with them advising and making recommendations as for ds's treatment plan etc.

I could possibly get school to request it in writing and see if they decline in writing and their reasons, as they do seem a little conflicting ie he didn't find therapy very useful, but yet they are keen for him to have therapy provided by someone else! But I don't want to push them into a corner, they cannot get out of, in case it results in ok he doesn't need therapy at all or similar!