SEN funding isn't a bottomless money pit

[Sogfree]

I'll preface this by saying I really enjoy my job working in a SEN school. I care deeply for the children and families I work with.

I've had 4 different conversations this week with parents where they expect an excessive amount of additional resource to be allocated to their child. They expect this as, in their opinion, it's needed. I disagree with 3 of the 4 parents that this is needed.

All 4 of the parents are going to fight the decisions county have made. Their decision to fight will mean county spend more money arguing the challenge.

Services are already broken with the increase in need. Recruitment fails, as there aren't enough speech therapists/OTs/CAMHS practitioners etc to employ.

One parent demanding extra from one of these services means another child gets less.

One parent demanding a child goes to school X at £100k per year when a place at school Y at £30k is going to meet their needs means the child who needs the place at school X doesn't get it, and extra £70k per year is wasted. And the parent keeps their child out of school for 12-18 months whilst they fight for the place at school X.

That's the reality.

Every parent wants the world for their child. I understand that. But taxpayers can't afford to give every child the world.

AIBU - parents know their child best and we should fund what the parents say the child needs

YANBU - there's only so much money to go around and parents need to accept hard decisions have to be made without challenging them

I was told I was 'being neurotic', 'being a nurse', and 'reading the textbooks' by the professionals I raised concerns with about DD1. I was made to feel like I was just a terrible parent.

I was in early pregnancy with DD3 when DD1 started preschool, and within a few weeks they asked me for a word and told me that DD1 was quite behind, etc. It took persistence on my part to get her seen by pediatrics, so I was in my third trimester by the time the hospital saw her and decided that investigations were necessary.

DD3 was 4 weeks old when we got the results of DD1's MRI, which showed a brain malformation and we were told DD1 had global developmental delay and epilepsy. She needed special school.

I was told I was neurotic and that DD2 was 'just copying her sister' when I raised concerns at preschool. I was told that I was 'making a fuss' and was pretty much accused of fabricated/induced illness when she was in year 1. At school 2, I was told she was 'fine ' despite her anxieties. At school 3, they finally saw what I saw. She was diagnosed with ASD at 11. Secondary school failed to meet her needs so she had a breakdown and after 2 unsuccessful placements she is now at a special school.

DD3 slipped under the radar. In hindsight, her extreme sensory sensitivity, inability to cope with going into school, unwillingness to learn to read despite being extremely intelligent and her obsessive hand washing should have been flags. With two other children who were struggling, it just seemed like quirks. She had a breakdown in year 9 and ended up completely out of school, very unwell for a year. Now she's at a special school.

It isn't as easy as 'why did you have more'? Needs emerge over time and parents are gaslit into thinking they just aren't that good at parenting.

If you don’t claim it, how do you know how rigorous the assessment is????

It's almost as if a global pandemic has hit, causing a massive increase in young people with mental health needs, alongside an ever more demanding curriculum that is pushing children into crisis.

When DD1 was 4, the Statement of Special Educational Needs rate (now EHCP rate) was 2.4% and it had been for years.

There will be a small increase because EHCPs can now go to 25, but it doesn't account for the exponential rise.

Oh and on mnet there are loads of parents of children with what is sometimes called "level 1" autism, or adhd, who will talk about the fact that they've had to fight for ehcps, support, funding etc and this means the system is broken, does nothing etc.

Meanwhile, I've got 3 friends with children with severe disabilities, in the old fashioned sense. When their parents say they can't do something, they really mean they can't. Not that it will make them "dysregulated" or uncomfortable, or they find it really difficult. They simply can't do at all, under any circumstance.

They had zero issues getting any of:
DLA
ECHP
Special schooling

Etc. One DC has brain damage & cerebral palsy, another has a chromosomal difference, the third has what used to be termed "kanner autism", and is non verbal, low IQ, cannot function independently at all.

It feels so unfair that nowadays the term "disabled" groups a child with a major chromosomal disorder, with an IQ of 45, poor mobility, inability to feed themselves , speak or toilet train, under the same umbrella as a child with level 1 autism or adhd. Clearly the former's level of function & need is vastly higher than the latter and we've lost sight of that distinction.

I don't think that's true. There is a small minority of very vocal parents/activists for sure but the everyday experience of friends of mine who are disabled/parents of SEN kids is actually worse than it might have been before due to the unpleasant individualist "what's in it for me?" tone of much public discussion.

So we had to get an EHCP for our child who has a very similar range of issues to DH. DH pottered through primary (small, rural) and secondary (only local choice as rural) and then went off to Cambridge and has led a nice life on the whole although feels different and chooses only "formulaic" type of social interaction. He didn't need any extra support. He was accepted exactly as he was. He has said to me that his rural area was supported by a (at that time) celebrated local authority (there are affectionate books about them!) who had e.g. educational psychologists for those who needed them.

Our friend became disabled suddenly and unexpectedly in her 30s. She has constant battles. Because she's not "old" people question her blue badge all the time. She works freelance as her health isn't good enough for more hours. One of her employers, a school, won't let her use a disabled space because they want to keep it for "parents who are disabled". She encounters this kind of attitude regularly. Her inlaws schedule healthy country walks! She can hardly walk but doesn't fit the stereotype of a "disabled person".

Neither do my DD or DH and nor do some of my students, but they absolutely are disabled in various ways.

We have talked of getting a tshirt "You.have no idea how much effort it takes to seem this normal."

I was told I didn't know what I was talking about, that I was imagining things, that it was just a phase and on and on and on.

my eldest was diagnosed on my youngest’s second birthday - they were almost 11.

I guess we SEN parents should build ourselves time machines

It's almost as if a global pandemic has hit, causing a massive increase in young people with mental health needs, alongside an ever more demanding curriculum that is pushing children into crisis.

No its also:

• changes in parenting
• screen use
• changes in perception

My friends daughter has a diagnosis. Honestly she'd never have got one when i was at school! She is verbal, at expected level academically (when she wants to be) has friends, sings in the school choir. In the past, she'd simply have been considered a quiet, introverted girl, with a tendency to nervousness & a bit of a temper. She'd have been subject to much stricter parenting at home.

Stimming habits like chewing or twisting hair, chewing sleeves, flicking/clicking fingers, tapping feet etc were quiet common and considered as a child being fidgety etc. There was no chewelry but the underside of every table was covered in wads of gum!!

The diagnostic criteria for adhd & autism have widening significantly. This is not in dispute. Many of the children diagnosed now would not have met the diagnostic criteria in the 80s.

@Louglebut why is an EHCP the ‘treatment’ for mental health. As I’ve said my child has an EHCP, it mentions ‘low self confidence’ 56 times in that report. But the EHCP doesn’t stop her feeling unsafe, headbanging, calling me at school crying, being electively mute, refusing to wash, eat, change her clothes. She needs MH support. She needs therapy. She has significant trauma due to her parents break up. I take responsibility for that. I own that.
Too many parents push the responsibility to the LA when they should be looking at why their children are so impacted and dysregulated.

My son became suddenly disabled just like your friend. 15 months ago he was perfectly healthy and then he wasn't and that was that, everything changed for him and us as a family overnight.

Unless you see him in his wheelchair, you wouldn't know he was disabled. Even then, I bumped into an acquaintance a few months ago who had no idea what had happened and she asked him what he'd done to himself because she assumed he was just recovering from a broken leg or a surgery or something.

We can't afford as a country to chuck "can manage with huge effort and support" cognitively average to able DC on the scrap heap educationally any more than we can afford (morally, ethically) more stereotypically "disabled" on it either.

As I said, DH went to Cambridge. He's had a successful career and always been in employment. He's taught thousands of graduate engineers from all over the world. He cried when he watched the Chris Packham documentary for BBC about autism. He found the section about the woman (the one who was doing stand up as a hobby) unbearable to watch.

We have huge labour shortages in this country. We simply can't afford to waste young people.

I was told I didn't know what I was talking about, that I was imagining things, that it was just a phase and on and on and on.

I had a similar experience. DS had an EHCP before even starting school, yet the school refused to accept his disabilities. They repeatedly sabotaged our attempts to get his autism diagnosis. The senco asked me “what is it you want with all of these diagnoses?” The class teacher accused me of lying and paranoia. On one occasion they saw DS attack me in the playground after school and accused me of telling him to do it. Soon after we moved to another school, the senco became deputy head and the class teacher who accused me of lying and paranoia about my child’s disabilities was made senco.

@GnomeDavid it is brilliant you can afford the MH therapy, SALT and OT DD needs. A lot of parents can’t afford to fund significant therapeutic provision. Not to mention some need a different placement. A good EHCP would support her SM, help to increase the feeling of safety, reduce headbanging and crying, etc.

Middle class children also need provision so stop being so self pitying by reducing the issue to class warfare.

I voted YABU but not because I think there’s a bottomless pit of money but because your post at the end smacks a bit of “shut up and just accept what’s given” and in many cases what is given is zero, zilch, nothing, nada. That includes nothing that is free. All my kid wanted was a toilet pass so she could use the disabled loo and avoid the noise of the main toilets and a quiet space to get a little downtime as needed (the school library which is always staffed but not used for lessons) would have done. After 6 months of fighting I gave up and now HE. SEN provision is patchy at best and schools are too stretched to be able to provide even the most basic of accommodations but that doesn’t mean we shouldn’t fight for what our kids need.

I'm really sorry to hear that @Kirbert2. My friend is her own worst enemy really. She's always managing (she even cares for her disabled mum) and trying to make light of some big problems.

We have coffee every so often and she sympathises about the EHCP and I sympathise about the blue badge horrors. We have gallows humour about the whole thing I suppose.

I admire her. She is one tough cookie.

Thanks. It's hard but he very nearly wasn't here and I'm just so grateful that he beat the odds multiple times to not only be here but to be doing much better than we were told he'd be doing.

She sounds amazing. My son is the same, he was 8 when this happened and is 9 now and I'm just in awe of him every day, he's really had a tough 15 months and he laughs and jokes and calls himself a legend. I'm biased of course but he's the bravest child I've ever known.

No, DLA is absolutely not there to provide for SEN.

DH and I paid for a lot of assessment and provision ourselves. Of course we're lucky we could I suppose.

ADOS (because it was 2020 and all NHS services were shut for months and months)
QBCheck (ditto)
Ongoing physio for hypermobile injuries (GP said if you can pay don't go near the NHS for this, they'll discharge you after 6 weeks and disabled friend said the same)
Psychologist (we needed help now not in 3 years)
Play therapist (ditto)
NVR trainer (ditto)
Specialist optician for physio following NHS squint surgery (DH and his DP received the follow up with the NHS when they were kids)
Private educational psychologist (because the LA one didn't do any cognitive testing)
Private OT (because the council didn't find anyone till the last moment)
Couples' counsellor, family counsellor (don't need to explain this do I?!)

Why can’t parents pay for some of these things from their DLA as that’s what the money is there for. I don’t claim DLA because my SEN child doesn’t cost me anymore than my other children. It should be more rigorously assessed.

DLA covers a multitude of costs, very often its bridging the financial gap caused by parents needing to reduce their working hours to care for their child, which is a legitimate use. Mine contributes to specialist tutoring because my DDs school simply won’t teach her, it goes on activities that help her socially and give her confidence, it also goes on additional clothes, laundry and food. Her tutoring is £400 a month alone, which is pretty much her whole award.

Aw @Kirbert2 he sounds amazing too!

My friend is so brave. She had to leave primary teaching. They gave her a ground floor classroom and then scheduled all the meetings upstairs...

She is a peri music teacher and I admire her for doing that as it would be easier for her to give up. It would be a waste. She taught me in lockdown and I learnt loads!

Sorry but since when are parents responsible for autism, adhd, trauma etc

biggest load of shite I’ve read.

DD1 has ASD and moderate learning disabilities (although the exact level of learning disability is unclear). She is most disabled by her superficial level of understanding - she has enough understanding to know what she should be able to do at 19, but not enough to do it. She has enough understanding to know that animals get hurt, that there's global warming, etc., but not enough to put it into perspective and understand that she can't change it. She is very verbal, so people expect much of her, but she actually has a severe expressive and receptive language disorder, so only understands a fraction of what is said. She has mental health difficulties.

If you met her, you might just think she's 'a bit slow'. The reality is that she's likely to need full time care for the rest of her life.

Everyone we work with agrees that if she was a little bit more cognitively disabled, she'd probably be a very happy young woman who just enjoyed life within the scope of her limitations.

I agree with much of what you say about special schools. Ideally we would have more but smaller mainstream schools also, as many children with SEN end up in private schools simply because all they need is a smaller, quieter environment with smaller class sizes. If we had class size maximums of 25 or even 20 in such schools that would provide the sort of environment needed for children like this, and would also be able to ensure that children with SEN get much more attention and the teachers simply have more time to meet their needs properly.

However, even if we did have a system like that, we would still need special schools for some children, and we would need EHCPs or something like it to ensure that children's needs are properly assessed and provided for. It would be dangerous simply to leave it to schools to work things out, because experience has shown that children can and do get failed that way.

@HMart1nparents are responsible for how they respond to their children. Which makes a huge difference to how they navigate the world.