Be careful what you wish for

Most parents of disabled children become accidental experts in bureaucracy. It's not a skill anybody particularly wants, but after a few years you find yourself talking fluently about sections, descriptors, annual reviews and benefit assessments. You learn what evidence is needed, what words carry weight and which bits of paperwork need to be kept forever just in case somebody asks for them again in three years' time.

A lot of that effort is directed towards the same goal. Recognition.

We want schools to understand our children. We want health professionals to understand them. We want local authorities to understand them. We want the DWP to understand them. Again and again, we are asked to explain who our children are, what support they need and why. Sometimes we're believed straight away. Sometimes we're not. Either way, there is a constant sense that we are translating our child into a language the system can understand.

Andrew first qualified for Disability Living Allowance because of his profound deafness. Later, after his autism diagnosis and as his learning disabilities became more apparent, we applied again and were awarded Higher Rate Care and Higher Rate Mobility. There were no dramatic battles or tribunal hearings. The award was granted and life carried on.

When he reached the age where DLA transitions to PIP, I was nervous. By then I had read countless stories from families facing mandatory reconsiderations, appeals and months of uncertainty. The assessment process seemed designed to create anxiety, even among people with the strongest evidence. When the decision arrived awarding Enhanced Daily Living and Enhanced Mobility, together with what appeared to be an ongoing award requiring only occasional review, my overwhelming feeling was relief.

For once, there was no fight.

The DWP had looked at the evidence and agreed with it. No arguments. No suggestions that Andrew's support needs had somehow been overstated. No implication that he would be perfectly capable if only somebody believed in him a little harder. After spending years navigating SEND systems, that felt surprisingly refreshing.

What I didn't appreciate at the time was what the decision actually meant.

Not in administrative terms. I understood perfectly well what had been awarded and what it entailed. What took much longer to sink in was the reason an ongoing award had been made in the first place.

After all, the DWP doesn't grant ongoing awards because it thinks somebody might not need support next year. Quite the opposite. The whole point is that they have concluded the person's needs are unlikely to change significantly in the foreseeable future. In effect, somebody has examined the evidence and reached the view that this level of support is likely to be needed for a very long time. Perhaps for the rest of their life.

That wasn't a thought that arrived with the decision letter. It crept up months later.

One day I found myself reflecting on Andrew's award and realising that, in a strange sort of way, it was the nearest thing bureaucracy has to a prognosis. Not a medical prognosis, obviously. Nobody at the DWP is predicting the future. But they are making a judgement. They are saying that they do not expect this young person to become substantially more independent. They do not expect these support needs to disappear. They do not expect the fundamentals to change.

The odd thing is that none of this was new information. Andrew hadn't changed. We already knew who he was. We already knew the challenges he faced. Nobody had told us anything we didn't know already.

Yet there was something sobering about realising that a government department, after examining all the evidence we had provided, had independently reached the same conclusion.

For years, we spend our time fighting to have our children's needs recognised. Then one day they are recognised so completely that the system effectively says, "Yes, we understand. We agree. We don't anticipate this changing."

And it turns out that is harder to celebrate than you might expect.

I'm not ungrateful for the award. Far from it. I know how fortunate we were to avoid the battles that many families face. Nor would I wish for repeated reassessments simply to preserve some illusion of future improvement. The award provides security and removes uncertainty, both of which matter enormously.

But I think there is a complicated emotion sitting underneath it that many SEND parents will recognise. The thing we are fighting for is recognition. The reason we need that recognition is because our children face significant challenges. Sometimes, when the recognition finally arrives, it forces us to acknowledge the second part as well as the first.

Perhaps that is simply another form of acceptance. Not giving up hope. Not defining our children by their disabilities. Not focusing on what they cannot do. Just accepting that the world is probably going to look rather like this for a very long time.

And realising that getting what you wished for can sometimes be more complicated than expected.

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.