Post 16 shit just gets shittier... LONG

[MedusaIsHavingaBadHairday]

Please allow me to rant! I read a lot here and post only rarely as I realise my son is a bit older than many, however I thought I would rant a bit about the next step.

It's particularly for those who don't quite fit any mold (Starlight, Loucgle, Claw... as I think our experience may well be the sort that lies ahead for others.

DS2 ..16, has ASD, learning diffs, dyspraxia,hypotonia. Special schooled all the way, statemented without a hiccup.. he was very obviously delayed from birth and we collected diagnoses over the years.

He did very well, fanatstic support, and had partial mainstreaming with full TA support for the last couple of years. Academically he has the writing skills of a 6-7 year old and has done 'Entry Level' English and science with the MLD unit. He sat an actual GCSE in maths (his skill) and got an E, which for him was bloody amazing. We are very proud of him.

SO, here school stops at 16 along with the built in services..discharged from SLT, OT, Physio..referred across as he wears splints but no more actual programme. ..welcome to adult services.

Then we have assessment by the adult Learning DIsabilities team. They did the full standard IQ stuff... and couldn't score him!!! His profile was SO spikey ( that would be the ASD then) that he scored 75th centile in one area, below the 1st in another etc..mostly borderline. Their cut off for support is an iq of 70 and they decided that they couldn't calculate it but would give a rough guestimate of 80. Hence no support.
The report acknowledges that DS2 will need support to live in the community because his functional abilities are limited even tho his IQ is higher than 70. But tough shit, no help here...

Needless to say I am raising hell. It is technically illegal to withold support on an arbitary IQ cut off anyway, but my point is it's ireelevant if you young adult has an IQ of Stephen Hawkin's if he can't carry out daily activities without full support. He still believes in Santa FFS! He can't dress himself appropriately, make himself a simple lunch.. anything.

It just makes me SO ANGRY.
I thought it was difficult enough with him a child, accessing the right services and support. The future is 100 x worse:(

We were told last year that DS,14 would start transition at 17 and it would be complete by 18. Even knowing that he has another 3.6 years before he is an 'adult' it is scary.

We did think that everything would be OK as we have always known that he would stay at his school in the student unit till he was 19. Then we got the bombshell letter that funding has been cut for 16-19 years special needs education and they can only guarantee 3 days a week

I am silently fuming and wondering what we can do about this. When he is 16 he will have to stay on in education or training till 18 so why should he only get 3 days a week?

Ah I can answer that one Debs75... he can be cut to only three days because in post 16 education anything over 12 HOURS a WEEK is classed as full time by the government.

Seriously.. you coulnd't make it up!

We discovered this recently when we went to the transition evening. This year my DS1 will get 4 days. Next year it might be as little as two.. (and I work full time..:/)

In our area (West Oxfordshire n) our local SS only goes to 16, hence the early transitionsing to adult services..there IS no 6th form so my son can't continue with the in school Physio, SLT etc etc. I think in schools that go to 19 you are safe for longer.
Nominally DS2 will have access to a physio through college but judging by other parents' experience there we are more likely to step in rocking horse poo....

On the plus side. If your child is going onto a special needs course/6th form then they are entitled to ESA (employment support allowance) ..usually it's just foer those with disabilities seeking work. You do lose child benefit and tax credits, but if you don't get much, it works out better... and claiming that and DLA entitles the young adult to a 'Vulnerable Student Bursary'.

However getting the school/college to admit this exists is another matter entirely.

Given that my child is unlikely to be employed , or only at the most basic and part time level if he is very lucky, I am on a mission to a) make sure he has what he IS entitles to, and b) to tell as many parents as possible what is out there!

Medusa that is just infuriating and scary.
My Ds is also 16 with a bundle of diagnoses but academically able so he has gone to 6th form at a different school to do A levels. Practically he is well behind his peers.
Is your Ds not in education of any kind? I thought they were required to be until 17 now. I can see why he can no longer access in house physio etc but why has he been referred to adult services? For Ds NHS and social care services continue in children services until he is 18.

Oh well we are seriously fucked when he turns 16.
We don't work atm but I am at college with the goal of Uni and starting work before he is 19 and, as we thought still in full time education. We decided to start now so that we had the cushion of him being at school full time. My course will be full time with placements thrown in.

He is also a child who will never be employed, ASD with serious behavioural difficulties. DP is quite ready for his life to completely revolve around DS when he is 19 and probably having 1 day at a day care once a week as well as two younger DD's to ferry to school each day.

It is no wonder that parents of disabled children just crumble and opt out of the work market. We are struggling just to keep going and now that is going to get significantly worse when he leaves school. It is going to be soo hard to cope with 2 preteens and DS as an adult.

NoHaudin, yes DS2 is going onto post 16 education.. a special needs course at the local FE college..it's the only local option and has several 'levels' that cater for all the SS leavers, and also some from mainstream who have been statemented etc.

The transition of adult services is because of our system with no post 16 in school. I HAVE managed to hang onto the Paediatrican.. most lose him at 16 too, but I did stamp about that and they are going to see DS2 til he is 18. but the rest stops and will be accessed (or not) via adult services, early.

His social care..in the form of direct payments DOES stand til he is 18. Thank GOD... not that he gets a lot but we are going to use them towars care on the day he is not at college this year. He's a lovely boy and wouln't do anything dangerous at home (he's just sit and read wikipedia as that's his obsession) but he'd also forget to eat, or drink, and would sit there while the house burned down around him, so care is vital.

The adult future looks so grim and it shouldn't be that way. DS2 is a gentle passive young man who with the right support COULD do something. But the support just isn't going to be there.

.....[fear]

I see DD1's future as a very worrying time. As a young lady with SN she is going to be so vulnerable. Transition planning starts in year 9. She's got 6 years 'til then.

By then, there probably won't be any such thing as Special Needs

This thread struck a chord because only this morning we got a letter/information pack about ds transitioning to adulthood. I've been thinking at least he will stay at school until 19 but now I realise I can't be so sure. He loves his school, we all love his school and it's going to be a sad enough day when he has to leave, without bringing it forward .

We already knew we would lose stuff at 18. LAFFS which provide sporty days out for DS and sometimes the rest of the family. respite also stops at 18. Our SW drops away between 17.6 and 18 years to be replaced by an adult SW.

We were also offered for DS to go to the local college but his needs are too much and as a student there myself you see the ones which have needs and they have no supervision at lunch and free times. DS needs constant supervision.

We've also found out that when he goes in the post 16 student centre we will have to stump up for travel. If he went to college he would get free public travel but not his school travel, currently set at £500ish per year. To find he won't get CTC then is a huge blow for us financially

Once again the words "postcode lottery" spring to mind.

Thankfully SN education goes up to 19 at DDs school and most young people seem to go on to FE of one sort or another - various local colleges both State run and Independent which the LA have been funding, although the purse strings are obviously tightening year on year, as I believe funding for FE now lies within the LA.

It is hard to believe that some young people are virtually abandoned by services at age 16, whilst others continue to receive them. It has always been the case that Physio is not available on NHS for people with life long conditions, so it just seems to stop once they leave (specialist) education. DD was discharged by OT once she reached 18 as here OT sits within the Disabled Childrens Team (Social Care) so we moved across to adult services, but have never had contact from the Adult OT even though DD is in a wheelchair and needs lots of specialist equipment - no doubt when we need something and self refer we will be told there is a long waiting list for assessment. Crazy, as DDs needs didn't change when she went from 17 and 364 days to 18.

Of course there is always the option to say that you will no longer be looking after your DC once they reach 18. but sometimes the only way to unlock services as SC are well aware that having the young person living at home and providing a package is much cheaper than residential care.

It does seem a postcode lottery and I must admit I had not realised how lucky (relatively) we are.

Ds is in a different position as he probably could manage virtually independently eventually but not now at 16 and almost certainly not at 18 either. My fear is that he will be considered too able for any services. He only has as much as he has at the moment because of the severity of his OCD which is classed as a mental health problem. That is improving at the moment. If it continues to do so (but it is highly unlikely to disappear entirely) he will not qualify for support but will still need it.
My terror is that when we are no longer able to keep an eye on him, it will deteriorate badly, he won't be able to access help himself and he could end up well it doesn't bear thinking about.
(Sorry for the misery post)

Hmm, looks like we're going to be facing problems in the future too. Ds is at a residential out of county school who take pupils until 19. Transition planning will need to start soon and according to school the LA have been dropping hints already about him attending a local college when he reaches 19 instead of the school . Seeing as he can't cope in large classes and crowded areas and needs full time support how is a college going to provide that?

Medusa

Have you come across this organisation? I don't know how effective they are but I have crossed paths with them a couple of times and I was very impressed with them.

www.dimensions-uk.org/

I hadn't but I will have a look, thankyou:)

Sorry I didn't mean to depress people, but it is just staggering how after yars of relatively good support , we are now being abandoned to the mercy of adult services..and early, because our local ss stops at 16. And if it's like
this for DS2 who is acknowledged to need support for independent living that god knows what it is like for more able young adults:/

Medusa what would you recommend that parents do to be prepared for this? My ds is 15.....

This is an area I know little about and am really a bit too terrified to think about. At various talks I have picket up snippets of information. Private autism adult service providers have said to get advice from them when filling out the assessment forms etc to maximise the provision (I don't think they necessarily charge for this, just there is a knack / insider info about how to fill in the form and they hope if you get a budget you will use them). A social worker said to get your child's name on the council housing waiting list as early as possible - I don't know if you also have to threaten to make your child homeless - presumably the Council has a responsibility to house them, probably in some form of supported accommodation, so it may be another route to getting support (awful to have to threaten to kick your own child out of home). Several parents have gone the residential college route to extend the cliff edge a bit later. Then there are the young adults whose needs have been assessed as health needs not social care needs and NHS is funding a post 18 package. Surely some kindly parent has written a book about all this?

You probably all know that I have a much older DS and went through this post-16 nonsense almost 10 years ago now.

As it stands, he should have had a Transition Plan drawn up in Year 9 that would have stated what education and non-education support he would require post-16. It's drawn up following a multi-disciplimnary meeting with all the agencies invokved.

It's the Head teacher's responsibility to ensure a Transition meeting is called and a Transition Plan is agreed.

If you are in Years 7 -8 please start reminding your Head that this will need to be done in Year 9 - as they often 'forget' to do so.

There has always been a bit of a battle between the LAs and the old Learning & Skills Council as to who was responsible for post-16 education. The LAs usually say they have no statutory duty post-16 (although that may have changed since the raise of the school-leaving age) and that post-16 ed is a matter for the L&SC. The LS&C disagreed and stated that any child with a Statement remained the responsibility of the LA until age 25. Now the L&SC has disbanded their responsibilities have transferred to LAs so you could argue that LAs now have that responsibility for children with Statements up to the age of 25.

The LA can only stop SEN if they cease the Statement. They will cease the Statement if your child takes up an FE place. Most of the time there is no option but to leave school and go into FE as most 6th form courses are not appropriate to the abilities of child with SENs. But before ceasing the statement the SEN COP states that the LA Ed Pysch must be content that the child will receive an appropriate FE education.

Note - Ed Pycshs will not do this voluntarily - ours had never heard of this duty

There are plenty of good independent schools that cater for LDs from 16 - 25. So the LA could keep the Statement in force if they wanted to. I only met one parent whose LA had voluntarily kept the the Statement funding post-16 to enable her son to go to the Wing Centre in Hampshire - then classified as a school.

One option would be to write to the LA stating that your son wished to stay 'in school' post 16 and when the LA cease the Statement you will appeal to SENDIST for an independently funded post-16 placement. Of course you would need to prove there was nothing school/FE available locally. That's what my solicitor advised me to do. There are some SENDSIT decisions on post 16 education but it's still a grey area. Ten years ao, IPSEA could not help me at all in this matter - they didn't know what to do.

There are also some good FE Colleges for ASD students run by the Priory Group. They'll take LA funding - only one student I personally met was LA funded but again that was pre the demise of the L&SC. The best way to get a placement in an independent FE college is to work backwards. ring the college and ask how you should go about getting funding. They'll invite you to an Open Day, then an assessment session (free) and then help you make the case for a placement based on their assessment.

In some areas people with ASDs are cared for by the Communication and Language Disorder Units - these are the below 70 IQ teams in general. In some areas ASD people are the responsibility of CAMHS as ASD is treated as a MH condition (just like DLA treats it as a MH condition) rather than a LD condition. So being told because he ihas a spikey profile is not acceptable, You should ask for an assessment by a Clinical Psychologist of his current and future needs (independent of IQ. That's something that could have been done or scheduled at the Year 9 \Transition Review and stated in the Transition Plan.

So you can see we've come full circle from the start of my post when I mentioned Transition Plans and the importance of insisting that the Head actually draws one up.

Thanks wetaugust that clarifies and confuses all in one go.

There is a lot for us to do to get DS a suitable place post 19 but at least we have a good school who are up to the challenges. I know it is a few years ahead but it might be worth us finding local colleges for DS. DH doesn't want him to go away but I want what is best for him and a college may be best thing.

Debs he may change his mind about going away by then. Ds would not entertain the idea of leaving home at 14. As he will hopefully make university we were thankful that we live in a university city and hoping that he made the grades as local uni is Russell Group. Now at nearly 17 and with the next step much nearer he is prepared to consider other options though that means dealing with two lots of services potentially and is even scarier.

Shouldn't it be NaeHaudinMaWheest?

I'm worried about what will happen post 16.
Ds's indi SS caters for 16-18 but I know that the LA may well attempt to move him back in to save cash, even though they can't meet his needs (as his indi SS is outside the LA).

Don't worry buss.

But make sure you get his post-16 education sorted out by the Year 9 Transition Review. Then you'll have plenty of time to appeal if necessary.

eeeek - we're in Y11 now and it's not sorted!

Do you have a copy of the SEN COP? If so look up Transition planning.

I think it's reasonable to ask the LA what their plans are for post-16. You should have been told in Year 9. Your son's Head needs a good telling off for this.

thanks...so it should already be sorted?

would it be worthwhile phoning up the statementing officer to find out?