Annual review for dc not in school or Transition meeting (14 +)- any experience/ advice?

[pinkorkid]

The annual review is fast approaching for ds (age 14 ASD, ADHD). It will also be the transition meeting to plan for post 16 education. I'd be very grateful to hear of other people's experiences so that we can prepare as well as possible for it. I know a connexions officer will be there as well as the head and the senco. I don't know if it would be beneficial to have anyone else there.

To give some background, he is currently suffering major anxiety about leaving the house or interacting with anyone outside family so has not been attending school since Easter. We fought long and hard to get statement and place at special school for him 18 months ago and to begin with he was a lot happier there but escalating anxiety and some ocd type behaviours (intrusive thoughts, some compulsive rituals) have lead to him reverting to "hiding" at home again. He has a previous history of anxiety based school refusal and missed 18 months of school while we went through the statementing process.

The help we have had from camhs so far has been very limited and although we have made some progress with getting him to leave the house under carefully controlled conditions it seems unlikely he is just going to go back without a fuss in September. Part of me feels that we are planning for some imaginary scenario that may never happen. Has anyone had an annual review for their dc while they have been out of school with a medical need (anxiety/school phobia or similar)? If so did it address the problem as part of his review?

I'm going to be out for a couple of hours now but will check if there are any replies thsi evening. Thanks in advance for reading.

I think in reality you have to prepare for two scenarios

1. A phased transition back into school. Start off with half an hour in a lesson he likes and build up from there. Is there something that is exascerbating anxiety ? This can be anything from bells to itchy uniform and the removal of this. Then the focus needs to be on gcse or other exam choices. I would recommend that you and yor son start going to college open days and the like to see what is out there post 16. I know its early to start but he needs to get used to the idea first.

1. He just cant get back to school and what the lea and the school can do to support this.

When discussing both of these i think you need to see what therapeutic input is avaulable via the special school. I have known many pupils who cannot sustain full time school but who can do a part time time table so that really needs to be the main focus. The transition thing at 14 is fairly loose. They might say the are interested in say plumbing and by year 11 this has morphed into tree surgery. Its just a good opportunity to talk about what level of exams and gaining some of the skills he might need for later.

inaflap, thanks for taking the time to reply and for your useful advice.

School would be happy to facilitate a phased transition and we are doing our best to sell this to ds. The difficulty is that his anxiety is provoked by any social interaction outside the immediate family. Ds would be happiest if no-one looked at him or attempted to talk to him but at the same time is self-aware enough to know that having this attitude and his obvious discomfort when anyone persists in trying to be friendly towards him is the main thing that makes him stand out. We have talked about him going in to school and working in a room on his own and hopefully, after some social skills work with the senco, being able to reintegrate in the classroom. He has reacted to this by saying working on his own won't solve the problems he has being with other people but this is at least partly avoiding having to confront his fears about going into school again. He wants the problems fixed upfront and for him to go back completely normally and resists any proposals which he feels will make him stand out.

We will start investigating what the post-16 options are. We haven't had any what job do you think you'd like to do conversations, so will do that. Beyond computer game tester, not sure where his ambitions lie.

Apart from the social skills work from the senco, I think we will have to continue to look outside school for any therapeutic work.

pinkor, if he's not actually getting in to the SS then perhaps they're not meeting his needs. And the LEA only need fob him off for another 18m before they can wash their hands of him. Not much time to get to tribunal, if that's what you'll need to get his education sorted.

Have you looked at any schools with [gulp] residential 14-19y units? If nothing else, to give you an idea what additional support might be bolted on to the current set-up.

Hi maria, thanks for replying. I'm not sure that they could have done much more at school when he was there except perhaps have been proactive with the one-to one social skills work but easy to be wise with hindsight. Ds would be quite happy to go to school if only there weren't any other children there, as he copes with trusted adults but thanks to bad experiences at primary school, his defence mechanism is to blank anyone who tries to be friendly towards him and to find anyone who perseveres, despite the lack of welcome, suspicious and intrusive.

I think what we really need is someone to engage with him to get him to examine why his attitudes are often inappropriate and how he can change the panicky feelings/embarrassment when anyone talks to him or looks at him, help him to cope with intrusive thoughts etc. I think this will have to come from someone like CAMHS. Local camhs have been slow to respond. They are unwilling to offer further cbt (which helped him previously) because they feel he should be able to revisit the skills introduced then - I imagine it is lack of resources, personnel or finances that is driving this policy. After a long wait he was assessed by psychologist who ruled out full blown ocd although there were some behaviours consistent with that and diagnosed general anxiety disorder, prescribing an SSRI to tackle the panicking feelings. We've overcome his initial distrust of the medication but it's early days taking it and he is still on a very low dose. Local PCT have rejected request for him to be seen at a tertiary level camhs until all local options have been exhausted. We still have to agree with them how they decide that there is nothing left to try or that what is being offered is inadequate.

LA won't be able to wipe their hands of him at end of year 11 as his year group is the first to have to stay in education until 18. However his school only goes up to age 16 so we do need to investigate options for after then. His current school do offer boarding for 4 school nights a week but senco at school seemed to think this would be counter-productive as he needed switch off time at home to de-stress.
We did look at a priory group asd specialist school which goes up to 19 when we were going through statementing 2yrs ago but decided against it as too far to travel and adding residential to the equation at that stage would have been too big an ask for ds. Might be an option for post 16 if he is any more independent/emotionally mature then. They would have the advantage of offering counselling or psychotherapy potentially as part of the package. Would definitely involve going back to tribunal. I don't know if it's a viable option for now - but I should at least discuss it with ds as a possible option.

The whole thing feels like a re-run of the nightmare experience we had 2 years ago - ds was out of school for 16 months - camhs wouldn't play ball with providing cbt until the last 3 months, LA insisted they couldn't force camhs to do anything they have no established relationship with them in the way they do with SALT or Physio or precedent for including camhs treatment as part of the statemtn provision. So we had a hard won statement and even harder to win placement at special school for a child too frightened to take advantage of it. Eventually after complaints and intervention from a neighbouring camhs consultant, local camhs agreed to assess and provide cbt so we waived arguing for its inclusion in the statement. I guess we could try again to have it included as part of the review?

Sorry for the probably overlong reply, but helps to write it down. Thanks for reading and for good idea to research what can be offered at independent/residential schools. Might be useful as bargaining chips with LA?

The 'Transition' review at 14+ should not just be about future career/education post 16, but should also include the long term social care/health needs post 18. This is often overlooked at reviews as Education/School tend to take the lead and it is often just 'another annual review' with maybe the addition of Connexions being present.

Whilst you do need to discuss plans in the short term to try and get your DS back to school, and think about post 16 education placements/career opportunities, you also need to be thinking about whether adult social care input will be required post 18 either by way of support at home or a residential placement. You may not have met the criteria in the past under childrens' services, but assessment post 18 is different. Although I have to say, in many areas people with ASD don't really fit into the remit of S/C depts unless they have a Learning Disability - although there is obviously a need for many to receive input.

There are various publications available about transition, I think Contact a Family have a leaflet (possibly as a PDF) and maybe also Mencap, which may give you some ideas about what you need to be thinking about long term - which is what the Transition Reviews are supposed to be about, in addition to discussing short term objectives.

bigbluebus, Thank you for taking the time to reply and for good advice about expanding the remit of the meeting. As it stands, it will be just school and connexions. I attended a NAS support group recently with a speaker re transition to adult services. They suggested that although we could register an interest with the service now at age 14, they wouldn't actually get involved with us for an initial assessment until age 17 at earliest. Has this been your experience too. I will try to find out in advance what their criteria for involvement are, to see if we can expect any support. Thanks also for the pointers about mencap and contact a family leaflets.

Pinkorkid. I have 2 DC's with statements. DS (15 HF ASD) goes to MS school. His Transition review just involved Connexions and the SENCO, but his issues are at the mild end of the spectrum so he is unlikely to get any input from Adult services.
DD (17) has PMLD and complex health needs. Adult Social Care sent their Transition worker to her 14+ review and the 16 & 17 yr review. He did do a referral to adult social care on DD's 17th birthday, but they didn't 'spring' into action until 3 weeks ago - which is far too late and unlikely that things will be in place in time for her 18th brthday.
I was only thinking that in your DS's situation, schools often overllook anything outside education. It sounds like your Ds could do with some input from other agencies to develop his independence outside the home and away from you (although appreciate from what you say that this might be a step too far at the moment - but something to consider in the next couple of years ). This might be some support to enable him to go to a club or leisure activity and could be facilitated by way of direct payments from children's social care as part of his transition plan. Also may need to consider things like 'travel training' if it is likely he will need to use public transport to get to college at 16 - all needs considering and working on now - as it will not happen overnight!
Glad you have been to NAS talk on transition. I have found similar talks useful in finding out info and rights.
One things I can be certain of is that you are unlikely to be told what all the options are for your DS - just the cheap ones. That doesn't mean others aren't available - you just have to go out and find them yourself - and then fight to get them!!

thanks again bigbluebus - some really useful ideas there. We certainly do need help from somewhere to develop his independence as he is so resistant to doing anything outside his very limited comfort zone. I had always presumed we wouldn't meet criteria for social care involvement but it's something I should look into for future. I was going to say I'm glad I'm not the only one to think most options we've been offered are budget not need driven - but you know what I mean...

My DS was also out of school at age 15 and so anxious he would rarely leave his bedroom - even taking meals up there.

We didn't have a Transition Review.

At 16 he took up a residential placement at an independent, residential FE College which specialised in ASD. The aim was for him to gain independence skills (part of the Priory Group).

His specialist residential FE College gave him a support worker 1:1 who went with him each day to a local mainstream FE College and even sat with him through the lectures. He gradually improved his independence skills over the next 4 years. The residential FE College worked with him 24/7, providing opportunities to socialise in the evening (rather than spebding the evening playing computer games as he would have at home!).

I would recommend a specialist residential college. As the College said "We can make them do things here that you, as parents, wouldn't be able to get them to do at home". And College was right about that.

You need a specialist SEN Connexions PA - most of them are not SEN specialists and have absolutely no idea what's available. They'll probably try to push him into a mainstream local FE college and you'd have to prove that he wouldn't be able to cope in a mainstream FE College (due to lack of independence skills) and needed residential placement.

As Connexions still exists in your area they should be batting for your DS as now the L&SC has disbanded I think the LA would now have to fund any residential FE Colege and it could cost between £70K-£90K+, so the LA will be very reluctant to fund one.

The Review should not just look at education post-16 but everything a young person needs in transition to adulthood and beyond - i.e. the social side too, employment opportunities, post-16 education, referrals to Adult Services etc.

Our local Adult Services will not accept referrals for just ASD - the person also has to have a MH problem such as severe anxiety. Your DS would probably qualify on that count.

Best wishes

Pinkorkid - if you want to consider residential placements there is a list of colleges here

Agree with WetAugust, the LA will make you prove that local FE colleges/6th forms cannot meet the needs of your DS before they will even begin to consider a residential placement. Also, I have heard that if they fund a local placement at 16 it will be virtually impossible to persuade them to fund a residential placement at 18. (I am going on advice given to a relative whose son has Downs and who went to MS school until 16 - but then went straight to residential FE placement)

WetAugust, thank you for replying and for sharing your experiences with your ds. You have given me hope that there may be somewhere that can turn the situation around for ds. I agree that sometimes it takes a different dynamic to the parent/child one to get through to our kids especially at the adolescent stage.

Do you mind me asking how you manged to get your ds to take the step of moving to a residential placement? I know he would have been a bit older when he started but was it just greater maturity or was he convinced by visiting the school or by your faith in their ability to help him? Did you get significant help from camhs or anyone else beforehand?

I will check if the connexions advisor is a sen specialist- I had presumed it would be as it is a special school but should know not to take these things for granted. thanks also for the advice re adult services criteria.

bigbluebus, I really appreciate you taking the time to give me advice. Thank you for posting that link to the specialist colleges - I've had a quick browse and it looks very useful. I see you can filter the list for asd specialist, emotional difficulties etc so hopefully there will be some possibilities there. That's very useful to know that it is best to go for the specialist placement straight from 16 and not to presume we would be more likely to succeed at 18.

I was lucky in that DS desperately wanted to get back into education and, even though he was severely anxious, he wanted friends. He was only receiving 5 hours per week education in the Hospital school at that stage and knew that he had to find somewhere that would let him take his GCSEs (again). He was therefore quite persuable although it took him the best part of a year before he started to settle there.

Many of the parents I met at the specialist FE College Open Day were at their wits end, knowing that this was the sort of placement their child needed, but totally unable to persuade their child to give it a try. I often wonder what happend to their children .

CAMHS would acknowledge (verballly) that he needed a specialist residential placement but would not state so explicitly - in case LA and SS asked them to chip in to tri-partite funding of the placement. But CAMHS did write a report stating what sort of support he would need post-discharge which more than hinted at 24 hr specialist residential support and this was backed up by the private Ed Pysch report we commissioned.

I had to investigate all FE options that were available locally and prove he could not access them / they didn't give the level of support he would require. I also had to visit the FE residential College and make a direct application to them for a pre-entry assessment. Only then would the specialist Connexions advisor seek funding from the LS&C (as was in those days) for residential funding. If you find a residential placement you think would suit your DS the College itself can assist you in making the funding application.

Now that the LS&C has gone I think all funding is via LAs. DS was very very lucky that he secured his place while the LS&C was still providing the funding.

WetAugust, thanks again for taking the time to reply. I will hold on to the hope that ds may get to the position of being willing to risk another try at education at some point down the line. Right now we need to focus mainly on getting appropriate help for the crippling anxiety but it really helps to know what the plan should be for winning access to appropriate post 16 provision. I presume you must have paid yourself for the pre-entry assessment at the specialist FE residential college yourself? It's great to know that your ds was able to turn his life around with the right help.

No, the assessment at the specialist college was free. Some specialist schools however require up to 3 days residential assessment for which they charge, so they will only take referrals for assessment from LAs (with fubding).

We resorted to meds for the anxiety. They've made a big difference to his quality of life.

Sounds like it pays to shop around then. When we looked at schools first time round - the nearest suitable independent school (also priory group) did require funding up front for their assessment but it's good to hear not always the case.

Ds has just started meds for the anxiety but very early days and low dose at the moment so just waiting and hoping it will have a positive impact.