SEND - children’s needs to be reassessed from year 6 2029?

[missbish]

Are they taking the piss? After the struggles parents have trying to secure support for their child, they’re then going to threaten to take it away once they’re due to go to secondary? Ds goes to secondary this year so I don’t think it will effect him but I am so angry for those it does effect.

We wont agree and I'm not sure you fully understand how EHCPs work tbh.

I'm neither a conservative or reform voter but if that's all you've got crack on 😂

But many parents say they ‘had no idea’ before this point.

OT can be more expensive than equine therapy. If there was a more cost effective provision to meet needs in B, the more cost effective provision would be provided.

Physio often isn’t provided on the NHS at the level it is required. It is also a special educational provision.

Equine therapy can support motor skills, sensory regulation, core stability, emotional regulation, transition, coping with change, communication, social interaction, executive function.

So pay for it via DLA? Otherwise what is it for?

People need to understand that good educational support saves society money. DD1 was badly let down by her secondary special school. The result is 3 failed college placements and a young adult who now has a psychiatrist, a psychologist, a learning disability nurse, further Educational Psychology and SALT assessments (because her needs have changed so much), then she'll need either a very expensive educational package or a very expensive social care package. We're trying to avoid a mental health inpatient stay....how much do you think all that costs? It would have been avoided, had they met her needs.

schools must make reasonable adjustments, the issue is many refuse and there's no accountability (you could use the send tribunal but most parents won't as its too intimidating and too costly if you get legal support to do it for you). Imo if schools were made to put RAs in place lots of larents would never feel the need to apply for (and get!) EHCPs.

That doesn’t mean the needs don’t exist or that there aren’t signs.

Lots of parents have ‘no idea’ their DC have a physical health condition until the ‘wheels fall off’. That doesn’t mean the physical condition didn’t exist, doesn’t need support or that earlier intervention wasn’t needed. Neither does it mean the parents are to blame.

That’s what an annual review does. It assesses progress against targets set at the last review, and at transition points - Y6-Y7 - progress against the outcomes set initially. If the child has met all their targets / outcomes then they no longer need an EHCP. (In my many years of being a SENCO I’ve never known this to actually happen).

1:1 equine therapy is £190 for a one hour session. DLA at the highest rate is £110.40 per week.

Oh I don't know. The increased costs in heating your home, using more water, buying specific food, buying specialist equipment, more expensive holidays clubs and wrap around care because 'normal' ones don't always accept all send children, additional travel expenses for all the hospital appts/stays, specialist clothing? Maybe. Most peoples dla doesn't even remotely cover the additional expense of having a disabled child.

So that can pay for 3 sessions a month? Sounds reasonable.

We all face those costs. Everyone has some kind of expense beyond what most people face, I know I do.

Exactly. Look what happened with the PIP review. Loads of people were utterly gleeful at people losing their PIP and making it harder to get, then had egg on their face when it didn't go through.

In my experience, that is exactly what happens most of the time.

Basic OT, Physio and Hydro is covered for my son and then I use his DLA to top it up. DLA only goes so far as well which means I wouldn't be able to afford to solely pay for it all using his DLA as he needs things as well as therapy.

Well, my kids are much older now, and are NT. but they only got a “ sort of good enough” education, which wasn’t good enough.

I paid for tutors etc. British state education, whatever the needs, hasn’t been good enough for decades. 🤷‍♀️

Exactly. And lots of parents are fully aware that their child has unmet needs, but the 'system' doesn't recognise it until the wheels fall off catastrophically at school.

Like what?

If it was the only thing that a child needs. But if they've been assessed as needing equine therapy (the bar is high and they would need reports stating that they needed it and what outcome/need in their EHCP it would meet) then they're likely not a run-of-the-mill EHCP holder. Even within the realms of EHCPs, there will be EHCPs that require relatively 'normal' provision and those that require much more tailored and bespoke provision. For example, all the children at the school that DD2 and DD3 go to have EHCPs. They have all been identified as needing a very small setting with very specific provision. Their school has 28 children and all students have 1:1 support at all times, with bespoke curriculums to progress to their future goals, and individual teaching. It aims to give them the support they need to function in society and become productive adults.

Why do some posters appear on threads like this - stating the obvious about the “empty pot” etc - and seem to be expect PARENTS to solve the UK economic problems?

How can any one parent or even a group of parents -all with children who have a wide set of varying disabilities and personal financial/home situations - be fairly expected to come up with something?

Being rounded on because you’ve expressed concern about the proposed changes to EHCP processes is horrible.

Do these posters start trying to fight with other posters for their happening to belong to a group that costs the state a lot..? The parents of children in care? Parents of children with cancer? With lifelong heart conditions?

And why do threads like these always somehow come to remarks about the worth of educating the profoundly disabled. Why should anyone have to justify the right to their child’s education just because they were born different to the norm? Ask the fucking government these questions instead of hounding individuals on here who haven’t ever turned on NT/intelligent and able-bodied children or more specifically to the posters initiating these little side projects to have a go at parents of disabled children.

I have no idea if my 8 year old will ever talk - because I don’t know why she can’t. If she can’t talk or communicate clearly with people who don’t know her well she will never be employed. If she doesn’t get the opportunity to LEARN to communicate- by whatever system she might be able to use - then she definitely won’t be employable. If she’s not assessed for learning disabilities how can anyone know where she could develop or whether she never will or which areas she could develop? And what the fuck are people meant to do with disabled children if not try to develop them to the best of their abilities.

I don’t have a particularly strong view on the proposals because my daughter is so physically disabled that mainstream schools could not do anything with or for her. I hate this fact, but accepting what she has and what she needs is what I’ve had to do.

But lay off the political drums about increased EGCPs - do you think Michael Gove is on here to answer these questions?

You really haven’t got a clue. For many DLA/PIP doesn’t cover disability related expenses now so it wouldn’t cover provision that is currently provided by EHCPs as well.

We spend DSs disability benefits on:

Higher electricity costs - medical equipment (feed pumps, seating, bed, rise and fall bath, changing table, nebs, hoist, through floor lift, etc.). DS1&3 have EOTAS/EOTIS, some of which is delivered from home so some days they are both home with up to 4 extra staff when others their age would be in school with no staff at home, DS1 has carers at home so sometimes there are 2 extra people in the house using electricity.

Higher gas costs - we need the heating on higher and longer for DSs’ medical conditions and DS1’s reduced mobility. Because DS1&3 are at home more during the day the heating needs to be on more than if they attended schools - both for their needs and because there are other people working in the house.

Higher water costs - DS1’s clothes/bedding etc. need changing more than the average person. His specialist bath uses more water than many conventional baths. He also needs washing more. With carers and education staff in the house, there are more people using water.

Higher food costs - for medical reasons.

Motability vehicle - monthly mobility amount, the AP and adaptations. DS1’s current vehicle cost us over £15k. That is on top of the monthly amount.

Car parking charges and fuel costs - we have to drive places we would otherwise walk. Not all car parks offer free blue badge parking. More hospital trips.

Equipment not funded - we are lucky we have had a lot of charity grant funding for things such as SN car seat, SN buggies, bike trailer, specialist seating, other equipment, etc. but not everything is funded or has charity funding available. From the little things such as slider mitts, incontinence swim products, topping up the incontinence products provided because they aren’t enough even though we get more than many to bigger expenses such as topping up the funding to have a H-frame hoist because only a single track hoist will be funded even though the OT recognised a H-frame would be better and was really needed. Not to mention all the things we buy in the hope they will help but don’t.

Medical assessments and treatment - assessment and medication for one of my DSs. The medication has now been taken over by the NHS.

Pre-action letters to hold the LA and ICB to account. I can write my own, but increasingly LAs are ignoring them if they aren’t from someone with a legal aid contract. They know that you will still have to find someone with capacity to take your case and that kicks the can down the road.

Independent assessments for EHCP purposes to hold the LA to account - although the LA contributed to these costs with the settlements from previous complaints.

Costs associated with hospital admissions.

We all face those costs

No, no you don’t.

I would find it helpful to understand what are the simple adjustments that schools could put in place earlier that would effectively support children with send. People have said that smaller classes is impossibly expensive when scaled up across the country. What else would help? There was a secondary teacher on here a while ago who explained the difficulty of having students who needed noise and movement students who needed quiet and routine students who came in late left early and the effect all this had on the other s. The conclusion was that given multiple conflicting needs it was impossible to meet them all but I’m wondering if there are easier things that would help as posters are saying once a child has been excluded from mainstream education it’s rather late?

I am a little concerned as it’s very “ vague “ in its working of the most complex needs. Most parents will just fight that their child is complex it’s still not very clear.

I am worried as it will land at our transitions in to higher education.

she couldn’t get in to a La Sen school for not being academically behind enough or not “ complex “ enough so is in an independent Sen school.
but I do worry about Losing her place for 6 form.

DD2 'appeared fine' to teachers who didn't recognise that a child grinning and bouncing on their toes was not, in fact, happy to see them. She 'appeared fine' but regularly burned out. Eventually a SENCO listened to me and supported referral for ASD assessment (until then, the GP wouldn't refer because school said she was fine). She became unfine in year 9, then finally became completely unfine in early year 10, in such a way that her year head, having tried a reduced timetable, told me to stop trying to bring her to school.

DD3 was 'fine' until year 9, then spiralled into a breakdown.

They're 'fine' until they're not. Unfortunately, if people listened to parents when they said their child is not fine, they wouldn't get as ill as they do, and wouldn't need years of provision in expensive independent special schools.

I mean I would fully support classrooms being a bit more 90s, less stimulating, slower pace. But I expect that wouldn’t actually work, as they seem dependant on screens/fidget toys/movement breaks and things that we didn’t have back then. It’s hard to know really. On one hand they say they want a slower pace, less intensity, more quiet. On the other they want screens and spinning chairs etc

If all children need to learn to swim, for safety... but some cannot learn in group classes... how do you propose we provide swimming for the others.
My DS couldn't learn in a group, we got up at dawn the day the holiday 1:1 sessions were announced for several years, and spent £100s on those lessons, plus missing work just to take him to the lessons which were of course on work days, during the day. He is now a strong enough swimmer, and confident enough personally, to go in a small group. But without these lessons he would have been at risk of impulsively jumping in to a body of water on a hot day as an older teen. Which as we have seen on several occasions in the last few years, can lead to the ultimate disaster. It doesn't bear thinking about. And lots of families don't have £100s to spend on 1:1 swimming lessons, but they could save a child's life.