Further Education Part 2 - Why the Reassessment Was Necessary

By the time Andrew reached the post‑16 stage, we had a much clearer understanding of who he is and how he learns. Not because anything dramatic had changed, but because years of living with him had given us a detailed picture that no early EHCP could ever have captured. His profile wasn’t a mystery any more. It was a set of consistent patterns, preferences and needs that had become part of daily life.

The old EHCP didn’t reflect any of this. It was still written in the language of possibility, the kind professionals use when a child is ten and the future is wide open. It talked about emerging skills and developing independence. It described a boy who was still being figured out. It didn’t describe the young adult who now sits in front of us, whose learning style is stable, predictable and unmistakably his.

This is where PMLD comes in. When school mentioned it in the 2024 annual review, it wasn’t a revelation. It was simply the first time anyone had said out loud what had been obvious for a long time. Andrew’s learning is sensory and co‑active. He doesn’t generalise skills. He doesn’t access symbolic communication. He doesn’t learn through hearing language. His engagement depends on adults who understand his cues and can shape the world around him so that it feels safe and familiar.

The reassessment didn’t just confirm PMLD. It finally put into writing the level that matches how Andrew experiences the world. A03. The descriptor that recognises his need for full support across all areas of learning and daily living. The descriptor that acknowledges that progress, for him, isn’t measured in steps towards independence but in moments of comfort, anticipation and connection.

This is why the reassessment was necessary. Not because the paperwork needed refreshing, but because the old EHCP had stopped telling the truth. It was describing a child who no longer existed, and leaving the system to make decisions based on assumptions that were years out of date. Before anyone could sensibly plan for post‑19, the description of Andrew needed to be accurate, current and honest.

Getting the profile right now prevents battles later. It stops the system from suggesting placements that rely on independence he doesn’t have or teaching approaches he can’t access. It ensures that whatever comes next is built around the way Andrew actually learns, not the way someone once hoped he might.

Understanding Andrew’s learning profile isn’t about limiting him. It’s about recognising the way he thrives and making sure the next stage of his life reflects that reality.

Further Education Part 1 - The EHCP Reassessment: What Changed and Why It Matters

EHCPs age in strange ways. They don’t wrinkle or fade; they just quietly drift out of date until one day you realise you’re still working from a description of your child written when TikTok was new and Andrew was ten. His last full update was in 2019, which meant that by late 2024, his EHCP was basically a historical artefact - a blurry photograph of a boy who no longer exists.

The first hint that this might be a problem came at Andrew’s Annual Review in November 2024, when his school casually mentioned that they believed he met the criteria for Profound and Multiple Learning Disability (PMLD). They said it as if they were commenting on the weather - “Oh, by the way, we think Andrew is PMLD now”. And then … nothing. No request to update the EHCP. No statutory process triggered. Just the observation, left floating in the air like a balloon someone forgot to tie down.

Fast‑forward twelve months to the Annual Review in November 2025, and the same school expressed surprise - genuine surprise - that Andrew’s EHCP still didn’t reflect PMLD. As if the document might have updated itself overnight, perhaps out of sheer enthusiasm. This time, someone remembered to tick the box requesting an EHCP amendment. Progress.

The local authority took one look at the request and did something unexpectedly sensible: they said that PMLD can’t be diagnosed by a school, and that a formal determination would need to come from an Educational Psychologist. And then, crucially, they didn’t just say it. They acted on it.

With our agreement, the LA triggered a full statutory reassessment. And here’s where things took a turn for the better. The LA’s statutory assessment team were not only responsive, but genuinely willing to be steered. Every time I pointed out a deadline, a guideline, or a procedural requirement, they adjusted course without fuss. It was like watching a ship that actually responds when you tap the rudder.

Together, we kept the process tightly on track. Assessments were booked promptly. Reports were chased. Timescales were held. And by the end of the 2025/26 summer term, the reassessment was complete and a new EHCP was ready - just in time for post‑19 College applications opening on 1 September 2026.

The outcome was clear and unequivocal: Andrew meets the criteria for PMLD, with functioning described at A03 - the level that reflects his reliance on others for all aspects of learning, engagement, and daily living. None of this was news to us, of course. We live with Andrew. We know his sensory world, his rhythms, his joys, his limits. But having it formally recognised matters. It anchors the EHCP in reality rather than optimism.

The reassessment also forced a kind of emotional stock‑take. You spend years advocating, adjusting, firefighting, and then suddenly you’re asked to articulate - in writing - the whole of your child’s life. What he can do. What he can’t. What he needs. What he deserves. It’s a strange experience, being both parent and witness.

But the final EHCP is strong. It reflects Andrew as he is now: a young man with PMLD, with a rich sensory profile, with a need for highly specialised support, and with a future that depends on the right environment.

And that’s exactly what we need as we step into the world of FE applications.

Our Journey from DLA to PIP: A Living Diary 2026

Under the DWP benefits system for England and Wales, children receiving Disability Living Allowance (DLA) must transition to Personal Independence Payment (PIP) once they turn 16 - but it’s not automatic. The process begins months earlier, when the DWP invites a parent or guardian to become the young person’s official ‘appointee’. Alongside PIP, there’s also the option to apply for credits-only ESA and even to get LCWRA established, adding more layers to the journey.

This blog is a living diary of our experience navigating Andrew’s transition. It may span many months, and I’ll be updating it as we go - one step, one date, one decision at a time.

What follows is a continuation of our 2025 entries, which you can find on: Our Journey from DLA to PIP: A Living Diary 2025.

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Jump to most recent entry

10 Jan 2026 - Having heard nothing from whichever company now carries out PIP assessments, no phone call, no invitation to an actual meeting, it was a surprise to receive a letter from the DWP to say that they now have "all the information they need to made a decision". So we wait to see what that decisions might be.

Jan 2026 - In the meantime, it has been four weeks since the phone call to say that Andrew has been awarded credits-only ESA but we haven't received a letter to confirm this. We seemed to jump straight to the Capability for Work Questionnaire. I must telephone and chase up the paperwork as regards the ESA confirmation.

29 Jan 2026 - I found the confirmation letter for credits-only ESA, I had mis-filed it over Christmas (amongst the PIP paperwork!)

29 Jan 2026 - I think I mentioned in the 2025 blog that I'm not a patient person? LOL. I telephoned the PIP information line. After security questions, the automated system said that Andrew is due a payment of £x in March. So I held out for a human being (15 minutes total call wait) and, yes, a decision has been made - the letter went in the post on 22nd, call back in another week if we don't receive it.

Dropping the payment figure into AI, it works out that Andrew has been awarded Enhanced Daily Living and presumably also Enhanced Mobility (as there was no figure that corresponded to only being awarded Standard Mobility). Good news!! 

BUT - something I didn't realise - he will receive no payment in February because they have aligned the payment dates to the same 4weekly cycle as DLA, and apparently DLA is paid in advance, whereas PIP is paid in arrears. We can cope, others might struggle to have a month without payment.

30 Jan 2026 - The PIP award letter arrived the day after my phone call, confirming the Enhanced award for both Daily Living and Mobility. In terms of points awarded, he totalled 54 for Daily Living and the expected 12 (planning a journey) for Mobility. The award is described as "ongoing" which I believe is their current terminology for light-touch renewals.

17 Feb 2026 - Curiously we have received a DLA payment today. So AI informed me incorrectly, there is no payment gap.

21 Feb 2026 - Just when I thought we were quietly inching toward Andrew’s Work Capability Assessment, the DWP decided to remind me that nothing in this process is ever allowed to behave logically. Back in November, the GP issued a Fit Note saying Andrew was not fit for work indefinitely - exactly what the DWP guidance says to do for lifelong conditions. I naïvely assumed that “indefinitely” meant ... indefinitely. Today a letter arrived informing us that his Fit Note expired on 20 February and that if we don’t send a new one, his ESA credits may be suspended. It turns out the DWP’s system simply cannot process the concept of “indefinite” and automatically treats every Fit Note as lasting three months, no matter what the GP writes. So I’ve had to go back to the Practice and request another note starting 21 February, and warn them that I may need to repeat this every three months until the WCA finally happens. One more tiny administrative hoop in a journey full of them.

1 May 2026 Final Update - I’ve held off writing this because I’ve been waiting for the WCA decision letter to arrive - it still hasn’t, despite asking for duplicates - but after phoning on 14 April and again today, I’ve been told the same thing both times: back in mid‑March, Andrew was placed in the LCWRA (Support Group) category, with a note that this will be a lifelong classification and any future reassessments will be “light touch.” No more Fit Notes, hooray! This will make it much easier for him to be categorised as having a severe, lifelong disability when the DWP eventually release details of that new criteria. So although the paperwork still hasn’t caught up, the decision itself is in place - and with that, this part of the journey finally comes to a close.