One of our favourite things at SNJ is to share parents' experiences of their family's experiences of the conditions that affect them, finding the right educational, health or care support and how they've cut their own way through the 'jungle'.
I'm always thrilled if I hear that SNJ has helped them along the way. I'm just starting my update to the statementing guide, which should be out next year.
One mum "Clare", has been an SNJ reader for quite a while. Like me, she has a teenage son with Aperger's. I asked her if she'd consider telling her story and I'm so pleased that she has sent us this brilliantly written and very informative post about her recent experiences as they attempt to navigate the choppy waters of post-16 provision and transition to an Education, Health and Care Plan.
If you'd like to share your own experience, whether your child is pre-school, school age or a young adult, email us at firstname.lastname@example.org
Now, over to Clare...
Charlie’s adventures in the post-16 fairground
Like many families, our experience of SEND provision has been a bit of a roller coaster ride. The ups were often rather steep and some of the downs were frankly terrifying. So we were relieved when the end of school came into view.
We thought we were swapping the thrills of the roller coaster for the calm of the miniature railway. What we didn’t know was that the miniature railway had been diverted through the haunted house. We've had no idea what’s going to leap out at us around the next corner, other than it’s likely to be weird and scary. And every time we think we’ve found the exit, it’s turned out to be a dead-end. But before I get on to the ghosts and ghoulies and long-leggedy beasties of post-16 education and training, I need to tell you about Charlie and his story so far.
Charlie so far…
Charlie left school in summer 2014. He’s now 17 and a fairly typical Aspie; bright, articulate, knowledgeable, well-behaved, anxious, rather outspoken, can’t cope with crowds and hopeless at PE. He has problems with sensory processing, receptive and expressive speech, executive function and fine and gross motor control. That makes more or less everything a challenge, especially written assessment. Unfortunately for Charlie and others like him, written assessment is something dear to the education system’s heart. Even his specialist residential school.
Charlie didn’t feel that the education system listened to him, so he consistently refused to attend annual reviews and said he didn’t know what he wanted to do when he left school. At his Year 11 review, despite his absence, there was complete agreement between the people who knew Charlie well about what he was and wasn’t good at, and what he would and wouldn’t like. The local authority (LA) representative wrote it all down. We drew up a shortlist of options.
Charlie sat, and passed, some GCSEs, but (sorry, Michael Gove) didn’t manage the magic A*-C grades. That meant only one of his shortlisted options was possible. A week into it, it was clear he couldn’t cope. To everyone’s surprise it wasn’t the mainstream college environment that was the problem, rather the way the course was taught. So he was transferred to another course that you could tell just by looking at wasn’t suitable for him, but the alternative was sitting at home waiting for something to turn up.
And that’s what he’s been doing since the course finished. What he’s waiting for is a work experience placement, a decision about whether he’ll get an EHC Plan (currently 24 weeks and counting*). He also waits for the one morning a week when he does voluntary work for a charity. (Thank you, thank you, lovely charity people.) So what went wrong?
Charlie’s cohort was the last to leave school under the old SEN system and the first to start Year 12 under the new one. It was also the first to be required to stay in education or training up to age 18. All in the context of cuts to LA funding. Given that perfect storm, we weren’t expecting the transition journey to be smooth, but weren’t prepared for quite so many things to go bump in the night.
So what's been leaping out at us from the darkness and what’s stopped us from stepping out, blinking, into the daylight?
I’m a high needs student, get me out of here!
The first dead-end was the education funding criteria. The post-16 funding regulations are complicated. They’re so complicated my LA hadn’t put a link to them on their website. Twitter came to my rescue (thank you, parent in Sunderland).
Funding comes from a variety of sources. It can depend on the student’s prior attainment, predicted attainment, or there being a minimum number of students on a course. One of Charlie’s options that got ruled out could be funded for over-18s but not under-18s.
The second blank wall was eligibility for children’s social care funding. Charlie isn’t deemed an immediate risk to himself or others so doesn’t qualify. The ‘few questions’ I’d answered over the phone turned out to be an initial assessment. I discovered this when got a letter telling me Charlie wasn’t eligible for a core assessment and that I shouldn’t disclose this decision to anyone. The paragraph about non-disclosure had been left in by accident, but the children’s disability team did agree to repeat the initial assessment. Still no go. The children’s social care eligibility criteria were so woolly I was none the wiser.
The third barrier was the eligibility criteria for education. Charlie could reasonably be described as severely dyslexic. He might know his stuff, but written assessments are effectively a no-go area. The access arrangements for public exams are pretty flexible, but they have to be arrangements students usually use and the case has to be made for the student using them in an exam situation.
Charlie really needed to use voice-recognition software for written work, but that seemed to be a big problem for his school and his college. So even if Charlie was secretly another Einstein we’ll never know that, because he’s unlikely ever to get C grades in GCSE Maths and English. Never mind the student’s aptitude, knowledge or critical thinking skills, look at the impact on the college’s performance indicators.
The fourth obstacle was contracts. One shortlisted option involved two providers. They couldn’t agree on who would hold the contract.
The fifth brick wall was what was on offer. One fundable option was GCSEs that Charlie hadn’t already taken, but we couldn’t find a college that offered the right combination. At one point the LA told us Charlie had a ‘firm offer’ of a supported internship. When I rang the college to ask how that had happened given that we hadn’t applied for one, I discovered they weren’t actually offering supported internships as such – nor, to the best of their knowledge was any other FE college anywhere. They had their work cut out finding work placements as it was. The government’s shiny new supported internships scheme seems (to them at least) to be a work-in-progress.
Then there were the weird, totally unexpected things that went “Boo!” Watch out for these little monsters…
Person-centred planning ‘Person-centred planning’ might not be person-centred. It might not even be planning. A chat about what a young person wants to do with their life isn’t person-centred planning, it’s a chat. The sort of plan you should be aiming for is here Get it on paper, take it with you to meetings and make everyone read it before they so much as utter a word.
Oh, I forgot, sorry… The college’s learning support manager was clear that Charlie would need a, ‘very carefully managed transition pathway’. Yes. Yes, he would. The first thing that went wrong was at the school end. Charlie’s wonderful, understanding, impassioned key worker was assigned to different student, a few weeks before his GCSEs. She objected, but to no avail. Charlie got a new key worker, but no one remembered to tell us. Quite a lot of communication didn’t happen that term.
Things fell apart at the college end too. There was a massive building programme underway during the summer holidays. We all know what that entails. And the course Charlie had applied for had been restructured. No one could prepare him for the course or the course for him. So despite the college’s best efforts, by the end of week one. Charlie was floundering. Moral: double-check everything.
Are you ready for work-ready? The ‘work-ready’ course Charlie switched to is offered by most FE colleges. It's essentially English and Maths ‘plus’. It offers students the opportunity to improve GCSE grades, take additional qualifications and develop employability skills. There was a timetable clash with the one GCSE Charlie actually wanted to take. So he re-took one old subject (different exam board) and a different new one (in a year). Not surprisingly he spent much of his time feeling utterly confused and rather angry. Providing a high needs student with a full-time learning support assistant doesn’t make a square peg fit into a round hole.
Annual funding The new SEND system looks ahead to the young person’s long-term aspirations. But budgets are determined annually. As a result, parents of young people with severe and profound learning difficulties have found themselves on the beach at Marbella at the end of August frantically phoning the LA for confirmation of funding, so they know whether or not they will be able to go back to work in September. That explained why the LA weren’t looking more than a few months ahead for Charlie.
Meetings I can’t accuse my LA of lack of effort. In the last two years I’ve attended 24 meetings involving 21 different professionals – a total of 46 professional attendances. 13 post-16 options have been considered - only three of which have actually been viable. Charlie’s dad and I once met with a provider to talk about option X that had been ‘agreed in principle’ two months earlier, only to find out the provider team hadn’t even heard of it. At a second meeting with the provider, three months later, I was told option X wasn’t fundable. It was at that point that I spoke out. I offered some (positive, honest!) suggestions for speeding up the decision-making process. That clearly wasn’t how I was supposed to respond. Moral: if there has to be a meeting, check who’s going to be there, what’s on the agenda and that everyone has the relevant information.
The voice of the child The new SEND legislation rightly puts the views of the child or young person and their family at the heart of the process. But we are talking about young people with learning difficulties who might not have a clue exactly what decisions they are making. Let’s face it, this is challenge enough for parents and professionals. The SEND Code of Practice is pretty clear that people are expected to use their common sense.
After I’d spoken out, the temperature in the haunted house dropped noticeably. The LA started saying it was not what I wanted for Charlie that mattered, but what Charlie wanted. Up to that point, his voice didn’t seem to have been much of a priority. Now, they wanted to talk to him alone. They tried twice and managed three minutes each time before Charlie stormed out in frustration because he couldn’t understand what they were saying. At the last meeting I offered to sit outside but my offer was declined.
Progression The focus of the post-16 world is on “progression”. There’s a good summary about it from Suffolk here. Funding is expected to show value for money, measured in terms of the student’s progress. What this means is that students likely to drag down a provider’s performance ratings might find it difficult to get a place and that there are no incentives for commissioners or providers to say that a student already accepted on a course isn’t doing well. The student can be voicing a negative opinion as loud as they like, but if that reflects badly on the commissioner or provider, no one’s likely to hear them.
This is what we’ll do…or not Like most people on the autistic spectrum, Charlie finds it helpful to know what to expect. So if he’s got a visit, meeting or interview lined up, I try to get an idea of what’s likely to happen so I can let him know. Charlie’s had interviews at two FE colleges. Both times what the college said would happen didn’t, and what they said wouldn’t happen did. The first time Charlie got a bit distressed. The second time he turned down the college’s offer, point-blank. Moral: get a schedule in writing in advance.
Are we there yet?
For Charlie, the post-16 train has inexplicably stopped in a dark tunnel. He uses his time at home constructively, but is getting increasingly bored, frustrated and anxious. Not just because he wants to get on with his life, but also because he knows the delay shouldn’t be happening. Our local Parent Carer Forum has taken up Charlie’s story (and others) with the LA and the DfE. Frankly, I don’t hold out much hope that things will improve.
That’s because the problem with SEND provision wasn’t (and isn’t) the SEND bit of the system, it’s the rest of it. Our education system is designed around how politicians think it should work, not around the actual needs of children and young people. While we have one-size-fits-all system focused on qualifications rather than knowledge and skills, teachers not being trained to teach the 20% of pupils with SEND and Ofsted expecting all students to jump through the same hoops, we’re going to have a problem. It’s tragic that the most vulnerable members of our communities are the ones who pay the highest price.
Since I wrote about Charlie’s adventures in the post-16 fairground, we’ve received Charlie’s proposed EHC plan. At least that’s what it’s called. It actually looks more like his Learning Disability Assessment with knobs on. Or his LDA squeezed and stretched, protesting loudly, into an EHC pretty dress, depending on which way you look at it.
A couple of pages were missing from one assessment report. Some bits of the “All about me” section hadn’t made it into the needs, outcomes or provision sections. Some bits of the assessments hadn’t either. There was nothing from previous education providers and no social care assessment at all. The special educational needs were vague, and the outcomes weren’t SMART, (Specific, Measurable, Achievable, Realistic, Time-based), so the provision didn’t stand a chance of being specific. There was no information about personal budgets and no list of post-16 providers. More seems to have been left out than put in.
No, I’m not accepting it, in case you’re wondering. And Charlie? He peered at the covering letter, muttered something about ‘waffle’ and handed it over to me to deal with.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Latest posts by Tania Tirraoro (see all)
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