SEND HUGS, Chesham (2026)

02/03/2026

We’ve heard a lot about the proposal in the White Paper that children will have their EHCPs reviewed (and potentially removed) when they reach a phase transfer year.

This worries parents a great deal. Removing support at the very point at which most children need extra support and many cease to be able to access school at all is at best counterintuitive.

But reading the paper again, I realised that the problem goes even deeper than this. The proposal is that reviews will ONLY take place on phase transfer.

The current law requires reviews to be held at least annually. The local authority can make one of three decisions: to maintain the EHCP, to amend it or to cease to maintain it.

Annual review is vital to ensure that a child’s developing strengths and needs are recognised and that the provision remains fit for purpose.

In reality, reviews are often cursory, or ignored altogether. I’ve seen EHCPs for a Year 6 child that still contain outcomes which were met in Year 2. I’ve seen updated plans which remain in draft form and therefore unenforceable, because the LA has never finalised them.

But the new system will rely not on a child’s individual needs, but on off the shelf, one size fits all (or none) packages.

Implementation and detailed provision will be left up to schools - yet another thing to add to teachers’ neverending to do lists.

In a perfect world, this would mean provision could be updated as needs developed and EHCPs would be more dynamic and responsive to individual changes.

In the world we actually live in, this will mean parents regularly have to fight for any provision to be made and will have no recourse if their child is not receiving the provision they need.

No review will take place until a child is due to leave their current school, giving little incentive for those schools which currently fail to meet children’s needs to improve and address concerns as they arise.

It will still be possible to call for an early review, but if all this does is decide whether the child still fits into the standardised package, it leaves no room for nuance or addressing individual needs.

This seems to make a mockery of the whole review process.

01/03/2026

I’ve been stewing all week over an ignorant opinion piece in Monday’s Times which denied the existence of PDA.

Let me tell you a story.

When my daughter was 20 months old, she would wake up every night and cry for me. She usually spent the rest of the night in my bed, so we could all get some sleep.

Having read the books about how you should make your child stay in their own bed all night and wanting to be a Good Parent, I set up a reward system.

We had a fairy door downstairs. I bought a set of small toys and carefully explained to her that if she stayed in her own bed all night, the fairies would bring her a present.

That night, she woke up as usual and cried for me.

When I went to her, she shrank back and refused to let me pick her up, saying, “No, present!”

She huddled in the furthest corner of her cot, crying, before reaching out to me to be picked up.

I bent over and held out my arms, and again she shrank away from me, shaking her head and curling herself into a little ball as far from me as possible, as she repeated, “No, present.”

This was repeated several times, as she got more and more distressed, equally unable to stay in her own bed or to allow me to pick her up and give her the comfort she needed.

I told her she’d tried to stay in her own bed, so I was sure the fairies would still bring her present if she let me give her a cuddle.

She couldn’t let me pick her up, because rules are rules and she had to earn that blasted toy.

Remember, she was well under 2 years old at the time.

PDA is not being reluctant to stop playing and brush your teeth. It’s a lifelong debilitating nervous system disorder which pervades every aspect of life.

The demands that are resisted can be internal signals from the body to eat, sleep or use the toilet. They can be plans you’ve made to do a highly desired activity.

And demand avoidance is only one part of a PDA profile. There’s so much more to it. When my daughter was diagnosed, I’d never heard of PDA. But the descriptions I read of what PDA involves read like a personal history of her entire life.

The Times used to be a reputable newspaper. It should not be publishing ignorant rubbish like this.

28/02/2026

When I attend a meeting to discuss concerns about my children, I often come out of it feeling mollified.

My concerns and suggested solutions seem to have been listened to, suggestions have been made, and follow-up actions have been agreed.

I walk out of the meeting thinking, “Well, that was positive. Maybe we’re getting somewhere at last.”

And then I go over the meeting in my head, mull over what was actually said, and realise that I’ve just been gaslighted again.

“That’s not what we see in school.”

“She’s told us that’s not a problem.”

“He chooses not to use that support.”

“We think it’s better to do it this way.”

“We never said we would do that.”

Written follow-up hardly ever comes. If it does, it’s incomplete and often twists what I think has been agreed to suit the school’s agenda.

I’ve quoted from my notes of a meeting, only to receive an email accusing me of lying, because “that’s not something I would ever say.”

The level of mistrust I have for certain professionals has been well earned, and yet I fall for the performance every time.

I need time to digest what people have said and mull over my responses. I do much better in writing, when I can read something multiple times and properly understand its nuances and respond to it.

It makes me easy to gaslight in person - I take what people say at face value and only realise what they were actually communicating afterwards.

I’m finding it very difficult to read the White Paper and accompanying documents. They’re a masterclass in gaslighting - smooth words, reassuring phrases, great aspirations.

Of course they’ve listened to us, they care about our children, they’re strengthening our children’s rights, not diluting them.

Everything’s going to be fine if we just trust them. We don’t need to worry our little heads about the details, because “experts” are going to take care of them.

When parents are regularly ignored, sidelined, contradicted and persuaded to give up their children’s individual rights by silver-tongued promises that aren’t then kept, how can we trust that the same people who’ve failed us for years will now voluntarily do things they didn’t do when it was legally enforceable?

27/02/2026

Although I'm not a lawyer, I spent 25 years working in tax, the last 20 of which my job was to design, write and deliver training on the interpretation and application of tax law. I've taught staff from their first day of work right up to partner level and written and edited training manuals.

There are changes in tax law every year, and I went through 20 Budgets, sifting through press releases and budget notes and analysing the detail of the new Finance Acts and amendments to existing law.

I'm still working through the White Paper and consultation document, gradually getting my head round the detail, such as it is at this stage.

One of the things that comes to mind as I read about the new Specialist Provision Packages is the dog's breakfast that is VAT law.

It's fairly simple in principle - tax discretionary spending, not essentials.

Most food for human consumption other than catering and hot takeaway food falls into a legal category that is zero-rated for VAT. But then there's a list of items which are specifically excluded from zero-rating and are taxed at 20%. These include confectionery and potato snacks.

There are also exceptions from the exceptions, which are zero-rated.

There are regular court cases over which category a food item falls into. Two famous cases were over whether Jaffa Cakes were classed as a cake (zero-rated) or a biscuit (standard rated) and whether Pringles were a potato snack (standard rated) or not (zero-rated).

For the record, Jaffa Cakes are legally cakes, because they go hard when stale rather than soft, as biscuits do. The High Court ruled that Pringles were not potato snacks due to their low potato content, but the Court of Appeal decided they were potato-y enough to seen as potato snacks.

Why is this relevant? Well, entitlement to EHCPs under the proposed new system will not be decided on an individual needs basis, but according to whether a child fits into a predefined class.

I foresee endless VAT Tribunal-style disputes in the future over whether a particular child can be shoehorned into a particular category or not.

Or, as my son said when I first told him about his new school, "Am I really special enough?"

26/02/2026

I had to deal with a whole lot of crapmin today - the sort of admin you have to do when other people have messed up and you're left to deal with it.

Some of this crapmin came from school.

My daughter finally managed to go in today for the first time in WAAH week. A couple of hours after dropping her off, I received an email informing me that she is required to stay late after school tomorrow for a detention.

The alleged incident was on 13 February, the last day before half term. I emailed the school as soon as I saw that she had been given behaviour points, asking why they had been given for alleged behaviour in a lesson she hadn't actually attended. The email was acknowledged, but the issue clearly hasn't been resolved.

A few things make me cross.

The first is that she received the points in the first place, clearly by mistake. Nobody would be thrilled at this, but a strong sense of justice is a core trait of PDA, so she is more affronted than most would be at being accused of something she didn't do.

The second is that when I pointed this out, the error was not rectified. Again, her sense of justice is affronted.

The third is that the punishment was imposed so long after the alleged crime. She was not told about the behaviour points or the detention on the day the incident allegedly happened, nor was she informed at school today (for which I'm actually grateful, as it would have upset her hugely). It was left to me to tell her about the email.

The fourth is that I immediately responded to ask for this to be rectified and for someone to let me know that this had happened. None of the five addressees of the email has responded. The effect this will have on her anxiety levels about going into school tomorrow morning is significant.

Staying late after school is a big deal for someone who struggles to be in the school environment at all - doubly so when she never feels up to eating breakfast before school and doesn't eat at school. She's usually hangry by the time she comes out.

It's things like this that make mainstream school harder for neurodivergent children - they can't just shake it off. I hope she at least gets an apology- these things matter.

25/02/2026

This week, we're in WAAH (Week After A Holiday) mode.

For one child, this looks like headaches, stomach aches, random aches and pains, waking me several times a night, and complete crippling inability to attend school.

The whole thing is exacerbated by the fact that the first day of the second half of term was the start of two weeks of progress tests.

Going straight into something which is a high anxiety, non-routine activity is not the best way to help ease an already almost unbearably anxious child back into school after a break. The only thing I can do is keep gently encouraging without increasing the anxiety still further by trying to force her.

The other child is developing a really good level of self-awareness and said this to me as he came out of school yesterday:

"Mummy, I keep getting that tingly feeling, because I'm all out of routine. If I can't make the tingly feeling go away, I feel really angry and my body starts jerking. When we get home, I need to do a lot of jumping on the sofa to try to make the tingly feeling go away."

He had the tingly feeling again today - I really hope they both get back into routine soon.

25/02/2026

Today I’m feeling relieved, happy, excited - and experiencing a little bit of “survivor guilt”.

I’ve just received my son’s final EHCP for his transfer to secondary school, and it names the wonderful special school that we visited on Monday.

I feel incredibly lucky that we’ve got there without too much of a struggle, because I know how much harder it is for so many other families.

But let me tell you what “without too much of a struggle” looks like in practice.

I first went to my GP with concerns about him when he was 18 months old.

When he was at preschool, I asked if he might be autistic.

He’s been under a paediatrician and a neurologist since he was three.

I’ve asked every professional we’ve come across in both schools and the NHS the same question multiple times over the years.

I’ve been shut down and told there was no way he could be autistic multiple times.

He’s been actively refused support even when NHS professionals have assessed him and recommended specific support.

He’s been told he should be doing what everyone else does and shouldn’t be accessing any extra support over and over again.

He was eventually diagnosed with autism when he was 10. His current school is extremely supportive, but he still struggles there.

After years of begging for support for him, I finally applied for an EHCP myself.

It took 63 weeks from my submitting the application to get a draft EHCP.

At least three mainstream secondary schools then said they couldn’t meet his needs.

And now he has a place at a school which specialises in autism and social, emotional and mental health needs.

That’s what my relatively easy ride has looked like.

So you’ll understand why many parents are anxious about the new proposals, which will put more responsibility for decision-making in the hands of overstretched schools.

24/02/2026

The week before half term, I visited an independent school which my son’s EHC Coordinator had suggested might be suitable for him. She had sent them a formal consultation, so they had already seen his EHCP.

The website looked great, I was very excited about the model of education, and I was really excited at the thought that he might be able to go to this school.

When I visited, a few alarm bells rang, but I tried hard not to be too paranoid.

They were quite insistent that uniform adjustments would not be possible.

Fidgets could be used in class, but only those specifically chosen and provided by the Senco.

I was told the headteacher didn’t like children playing computer games at home.

I was pressed multiple times to talk about my son’s hobbies outside school. When I said he couldn’t access any clubs due to exhaustion and social anxiety, I was told he needed to learn more resilience.

And yet when they invited me to bring him for a visit, I still hoped.

His EHCP says he has difficulty separating from me, finds changes to routine difficult and needs support to access new environments.

The email confirming our visit indicated I wouldn’t be invited to stay with him the whole time. I responded, pointing out that this might be hard for him, but we would try.

When we arrived, the registrar said, “Right, let’s go. Mum, you can come back at 4.”

My son’s face crumpled. There was no leeway, no sympathetic words for my son, just impatience. We left.

The specialist school we visited yesterday couldn’t have been more different. I stayed with him for the whole tour, the adults engaged with him and met him at his level, and he jumped and flapped with excitement as he learnt more about the school.

And therein lies a major problem with the White Paper.

It assumes that pretty much all children are equally capable of accessing mainstream and all that’s needed is a bit of window dressing.

There seems to be a fundamental misunderstanding of the profound discomfort that mainstream settings cause to many neurodivergent children.

What we need are not more ways to squeeze square pegs into round holes.

We need more square holes to accommodate our square pegs.

23/02/2026

Well, here are the headlines:

- EHCPs reserved for children with the most complex needs by 2035

- Children with EHCPs to be reassessed under the new system on transfer to a new phase of education from 2030

- Every child with a place in a special school in 2029 able to keep it until they finish education

- All children with SEND to have an Individual Support Plan (ISP) setting out the actual provision they are to receive, written by schools

- Complaints about ISPs to be dealt with via school complaints procedures, but an independent SEND expert will be added to the complaints panel where there are concerns about a school granting an ISP or about the content of an ISP

- SEND Tribunal to remain, and parents still able to appeal decisions such as whether a child should be assessed for a Specialist Provision Package (SPP), which package they should receive and their school placement

- There will be a consultation on the proposals, closing on 18 May

So what are the "severe and complex" needs which will qualify a child for an EHCP?

The government has published an outline of the draft SPPs which will underpin EHCPs. EHCPs will be available in both mainstream and specialist settings.

The initial list includes:

- Profound and multiple learning difficulties

- Severe learning difficulties

- A significant permanent learning disability affecting speech, language and communication, executive function, social and emotional, motor skills and sensory development

- Social and emotional development with externalising behaviour - including children who may be autistic or have ADHD or a language disorder and exhibit challenging behaviour

- Social and emotional development with internalising behaviour - including children who are autistic, have a language disorder or wider mental health needs, whose social and emotional needs result in withdrawal, disengagement or "shut down"

- Sensory impairment - hearing, visual or multi-sensory impairments

- Physical disability

I hope many parents will be somewhat reassured to find their children are likely to fall within one of these categories.

The devil is in the detail. I'll be posting more as I digest it.

23/02/2026

We’re still waiting to see details of the government’s plans for SEND, but as well as the SEND reform package, we now know that there’s another sting in the tail of the schools White Paper that’s coming today.

The Department for Education has promised an announcement on new, more “ambitious” attendance targets.

This will strike fear in the heart of anyone whose child is struggling to attend school due to unmet needs.

We potentially face a watering down of rights, which could lead to more children having their needs not adequately met.

At the same time, the Children’s Wellbeing and Schools Bill will make it harder to deregister children, especially those with special educational needs, from school to home educate them.

And if they struggle to attend school, the pressure on schools from the government to improve attendance statistics will add to the existing pressure on parents.

It all sounds like the ingredients for a perfect storm.

The government needs to give serious consideration not just to earlier intervention for future children, but to how it’s going to repair the damage done to the thousands of children who have been victims of the failures in the current system.

22/02/2026

On Friday we were delighted to have the wonderful Liz McCarthy from SEND HUGS https://www.sendhugs.co.uk/ in for our full 2hr show, talking to us about SEN law, EHCPs, the support parents need (yet may struggle to find), and what schools can offer in terms of support for neurodivergent children, plus much much more! SO much helpful information and great tips from someone with lived experience of parenting ND children and also with exceptional knowledge of SEN law and experience advocating for parents.

If you missed it, you can listen again or download it by going to https://www.marlowfm.co.uk/listen-again and selecting Good Morning Marlow (which the Parenting Show is a sub show of) from the drop down, and the show date of 20th February.

We also mentioned that we would provide details of local support groups, which we will post in the comments below 🥰

22/02/2026

How did you sleep last night?

For us, it was a restless night.

For one child, that looked like refusing to get ready for bed, sudden angry outbursts, clenched fists, not wanting to lie down, muddled language, talking “scribble” (as we call it - using words for the sake of talking, with no clear meaning behind them), needing a lot of reassurance and insisting he was hungry even straight after a bedtime snack.

For the other child, it looked like grumpiness, barricading the bedroom door, and waking me in the middle of the night for food.

We always see this sort of pattern on the penultimate night of a break from school. Thoughts of school are creeping back in, they know it’s the last night they can have a lie-in, and nervous systems are going back into full alert after a brief period of better sleep and calmer days.

It interests me that both my children talk about being hungry on nights like this, especially as neither of them is particularly good at recognising hunger cues in the normal run of things.

My guess is that what they are identifying as hunger is actually that feeling you get in your stomach when you’re nervous.

Funnily enough, it’s 40 years this summer since I left school, and I still get that feeling when I go back to visit the school, as I’m driving up the long driveway and getting closer to the school buildings.

There’s a big reunion this year for the 40th anniversary, and I even get the feeling in my stomach when I think about visiting the school for that.

I think my children’s stomachs are telling them that school is on its way, and they’re misinterpreting it as hunger.

The break’s been lovely - I hope the second half of term will be smooth for all of us.

SEND HUGS

02/03/2026

01/03/2026

28/02/2026

27/02/2026

26/02/2026

25/02/2026

25/02/2026

24/02/2026

23/02/2026

23/02/2026

22/02/2026

22/02/2026

Address

Telephone

Website

Alerts

Contact The Practice

Shortcuts

Share

Category