I'll admit it, I'm struggling. I thought I'd done all the hard work with Son1 and his statutory support. He's settled in at Sixth Form college now and so far, things are pretty good.
That's the problem though, isn't it? When things are going well, it's easy to forget what it's like when things are a nightmare. I've even been asking myself, do I really need to bother going through this all again and transferring his newly-minted Learning Difficulty Assessment into a statutory Education, Health & Care Plan? Really do I?
I mean it's only for two years, right? - well a year and three quarters by the time an EHCP is finalised (I'm not even going to mention any ridiculous non-statutory plans some LAs have concocted.).
Is it worth the effort?
Specifically, my effort because, let's face it, although Son1 is 16 and supposed to be in the EHCP driving seat, he is too busy doing the things that many almost-17-year-olds do: Studying and managing Chelsea on the Xbox (he's Captain as well - sorry JT).
I thought hard about this because I do, after all, have Youngest's Y11 statement transfer to "co-produce" (remember that word?) as well in a short while. Strictly speaking, it isn't my decision to make for Son1, thanks to the bizarro Mental Capacity rules for young people over 16 with SEN. And, indeed, if left to him, he would certainly say he can't be bothered. What's the point?
Son1 has done his GCSEs, he knows the ropes for taking exams, he's now only studying the things he likes (History, Maths, Music and Drama, but mostly Music) so he should, in theory, be home free. He's had the benefit of seven years at an independent specialist school learning social skills - isn't that enough?
I expect I'm not the only parent in this position. It's not as if they're making it easy to transfer. Son1 had a statement until August 31st when his LDA and the new SEN system kicked in on the same day. However, he would now to be treated as a 'new entrant' as if they've never heard of him before. Just the thought of it makes me feel tired - me, the Special Needs Jungle lady! So I can only imagine what many other parents are thinking. Seriously, is it really, really worth it?
Then I remembered...
I remembered how quickly things can change, sometimes for the strangest, unexpected reasons. How the shift from okay to awful can leave you breathlessly wondering what the hell just happened here? How one minute you can be tripping along nicely with everything under control and the next you're surveying the rubble of expectations you'd been foolish enough to form on the strength of, "things going really well".
That's the thing about Asperger's - or Autism Spectrum Condition/Disorder or whatever we call it these days. It's unpredictable. Even when you've lived with it for as long as your child has been alive and you've seen its many permutations every one of those days. At all times of the day and night.
So, yes, it is worth it. Very much so.
On top of this, if Son1 opts for an music apprenticeship if there is one suitable, he will still be covered by the EHCP - hugely important as he makes his first steps into the wild world of work where no one realises or cares that he has special needs. At the moment, if he heads into Higher Education, the statutory protection ends but he will have a recent, well-produced, holistic plan to present to the university Learning Support. And, if the gods shine upon us, a statutory EHCP may yet snake its way into HE. Who knows what might happen? After all, the cynics put their money on reforms not happening at all and yet here we are.
So, our application is in and we are somewhere along this new, confusing, process where no one is quite sure what they're doing. I think I might go back to my Statementing guide to re-read the bits that still apply about gathering all your evidence. Do I want him to have a new Educational Psychology report or am I happy to use his LDA as the basis for the evidence? What about health needs? What about social care? So much to think about.
I can check our SNJ Flow charts too
Son1 now has health needs but I have no written evidence - how do I get this and within the timescales? No wait, that's not my job - how does the local authority get this in the timescales? What about my Independent Supporter? I had to ask about one and then I was virtually cross-examined about why I wanted one ('cos I'm the SNJ lady, remember? What, am I making trouble? Am I testing the system? Someone has to, don't they?) I want one because it's a brand new system and no one knows how it works and I'm bloody entitled to ask for one, that's why - and more to the point - so are you.
And yes, remember co-production, the bit where we're all supposed to sit around the table together and construct a holistic plan for our child? Well, I look forward to that happening. Hasn't so far and we're seven weeks in of our 20 weeks (if he'd stayed at school sixth form and it was still a statement it would be 14 weeks. Mad? You tell me.)
I want to hear your transfer stories for good or ill. And how is your LA at telling you what's going on? Is it understandable? Have they been open and forthcoming? Has your 16-18 year old been offered a non-statutory plan? (No, I'm not kidding).
Tell me all!
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Battled in year 10/11 to get my son a statement – got offered a zero hours one, renegotiated to a 25 hour one … Went from the worse statement our school had ever seen to one of the best.
Now at sixth form college – our school had no attached sixth form and have an s139a … I have asked for an EHCP as there is no way he can currently work or do an apprenticeship without support and understanding … This post has inspired me to keep asking …
Good luck in your journey … It sucks it is just one constant battle for parents and our kids – my son can’t fight this, he is 16 – not interested as does not comprehend the importance of this and as his disability allowance have agreed he is unable to manage his finances … He sure is unable to manage his future!
I am in Hampshire … If anyone has any advice
Hi Helen, try contacting Parent Voice 0300 303 8603 – we are providing Independent Supporters for parent/carers and young people. I personally am in a similar position.
Very interesting post. We are in a similar position – my son is 17, has ADHD, Aspergers and ODD and has spent the last 6 years in an EBD school with a statement. he started at college in September with an S139a and touch wood, everything is going well at the moment- the college’s Additional Learning Support team seem very on the ball and he’s doing okay. But I too know that we are only ever one meltdown away from a crisis … at the moment I don’t know that applying for an EHCP would really make much sense, but if/when the crisis happens I don’t fancy the 20 week wait …
Can you be bothered, the answer is, yes you can, for if you are not, then who is. Not wishing to cause you more problems, but you still will, eventually, need to deal with Adult Social Care, now that is an experience.
I have a son who will be 16 in December, hoping to be transferred at annual review in January. Not that I’ve had anything concrete from LA I
think they are still trying to sort out their Local Offer. One of my concerns is about the mental capacity, from what I’ve heard it sounds very vague, my son has hf Asd and is bright but struggles to communicate and is apt to say ,”It’s fine” or “I love my dog” (and he does love his dog :)) . He can’t even decide what to have for breakfast so I don’t know how he can be expected to make decisions about further education.
Hi. My 18 year old son is attending mainstream college with extra exam time, a word processor and regular access to teaching assistants to make sure he’s on track. Unfortunately, he failed his Level 2 course last year and so in his final year, he’s retaking that, instead of the level 3 courses he hoped to do.. He wants to be a freelance music journalist and has done for as long as I can remember, and that’s what’s required to get him to uni.
When he left his special school aged 16, his statement (which was in depth having previously fought and won at tribunal – afterschool life skills, independent travel training, salt, occuational therapy, play therapy.. you name it. 35 hours a week if I remember correctly) ceased and he was issued with a moving on plan (lda) and sent off into the college world.
When he first started 3 years ago, he was able to stay on beyond the 3 years, but of course that’s all changed now. I took the phone call yesterday informing me that unfortunately, the college didn’t have the funding to educate him post 19 years of age. However, I could try and get an EHCP, although that was deemed unlikely to succeed. Gutted, I told my son the news and he’s still sitting in his burst bubble – or thrown on the autistic scrap heap as he put it. No level 3 education, no media , no university. He has level 2 english and math and a distinction in imedia, and that’s it.
Then today, I received a call from the college principle, who told me that she’d received some new paperwork that she hadn’t read in entirety, but said that it stated “an EHCP *or* an LDA. Hurrah!! Conor had the moving on plan (LDA) since leaving school, problem solved, right? Well, no. The DFE are now saying that he *has* to apply for an EHCP, while the LEA are saying he’ll never get it because he doesn’t need over £6k of funding. So, once again, gutted.
What the hell do I do? I’m sitting here blubbing, with that God awful sinking feeling in my stomach.. I just don’t know enough about this, I don’t know if I can do it again, and there’s only me to do it. I’m a single mum of an autistic son, and another hormonal teenage son, with no fight left in me.
Any advice or success stories would be so appreciated.
Hi Andrea – this is a complicated situation that I have no personal experience with. I suggest you urgently call IPSEA.org.uk helpline for solid legal advice. You can also try SOSsen.org.uk. I’ll share this on our facebook group in case anyone has any other advice. x
Thanks so much. I’m still in shock I think, although that’s steadily turning to anger.
Some answers from the SNJ Facebook page:
Carol Dixon I’m sure I saw guidance saying that if EHC is pending, college could use learning and skills funding in the meantime. Our LA conceded our appeal for my son who is 21 – don’t give up! Sorry typed long reply on the SNJ page but it vanished
Like · Reply · 2 · 10 September at 21:45
Andrew Sutcliffe LDAs are only statutory until march 31st 2016 so that on its own isn’t helpful. If he met the criteria for a statement he should meet it for an EHCP as authorities are not allowed to change their criteria as a result of the new system. You (or he himse…See More
Like · Reply · 1 · 10 September at 18:37
Helen Gifford As a former SEN Team Manager I’d be very dubious about refusing to assess for an EHC Plan and drawing one up in a case where the college is saying ‘we cannot afford to provide the education’ when a young person needs that extra year to achieve their aim. I cannot imagine the SEN Tribunal looking kindly on such a refusal. Which is of course, just another fight, but my gut feeling is that it might be worth it.
Like · Reply · 1 · 10 September at 18:24
Solihull SEND Partnership Edward Timpson (MP for Children & Families) sent a letter to all LEA’s stating “The statutory definition of SEN has not changed, nor has the guidance in the Code of Practice on when to assess and when to issue a statutory plan. £6k is not a threshold …See More
Like · Reply · 11 September at 09:20 · Edited
Astrid Macabee Hi, you can use the link below(copy and paste in search engine) to locate an independent supporter in your area. Independent supporters are impartial and independent from councils. They support and advise parents of children with SEN and /or young people over 16 who are transitioning between a statement of SEN or LDA to EHCP.
http://www.councilfordisabledchildren.org.uk/…/find-my…
Good luck
Find my Independent Support provider | Council for Disabled Children
COUNCILFORDISABLEDCHILDREN.ORG.UK
Like · Reply · Remove Preview · 10 September at 21:46
Helen Frederick Hi. Sorry to hear about your troubles. I suggest contacting your local send information advice and support service. They give impartial advice and support and have had legal training provided by ipsea. I don’t think you can ask for a new moving on plan…See More
Like · Reply · 10 September at 18:34
Anne Ryan Jones Not come across this, but isn’t funding allocated on a needs based criteria, not a financial threshold based? It reminds me of some of the old ‘blanket’ funding that some LAs were taking to court over with the old CoP. I would contact IPSEA or ACE.
Like · Reply · 10 September at 18:16
1 Reply
Sharon Foxon Cowburn If they refuse to do a EHCP , you can fight them. You will have to go to mediation first before you can take it any higher.
https://www.specialneedsjungle.com/get-prepared/…See More
Like · Reply · 10 September at 18:54 · Edited
Elizabeth Nicholson Some fabulous info here. Don’t give up your fight, your son is worth it!! Good luck ???
Like · Reply · 10 September at 22:03
Hi Andrea, just read your post. What advice have you been given?
Hi Marguerite,
still no luck with funding post 19, without the EHCP. It says on the DofE blurb that it’s an EHCP or a current LDA, which he has. Apparently though, the LDA is only up to age 18?? He won’t qualify for EHCP because he doesn’t need over £6k funding.
I was of the opinion that the LDA should be enough as he hasn’t reached a level 3 or equivalent, but unfortunately, his college doesn’t agree.