I don't disagree that more of an evidence base would be very useful for making decisions about school spending. But I'd note that (1) class sizes in primary are now too large for any one teacher to accommodate different learning styles or pace of learning, which means unlucky kids can't learn unless they get extra help. (2) The curriculum requires all children to develop at the top of the bell-curve to thrive in primary school - too quick, you get pulled back into very boring "mastery"; too slow and you're left behind by the rest of the class with no accommodations unless you are diagnosed SEND and/or get an ECHP. And also (3) never forget that school spending (much like NHS spending) is a postcode lottery. You are very lucky to have what sounds like relatively easy access to Great Ormand Street. Those of us not in commuting distance of the best postcode for our ailment are still dying or becoming disabled because we weren't lucky enough to live in the right place.
Also, to what extent have you taken inflation / value of the £ into your calculations?
About 30% of the cost increase is inflation, the remaining 70% is genuine increase.
I wouldn't characterise it as 'easy' access to GOSH but I accept that living near London does make this more available than it is to those in other parts of the country.
This is also a side-effect of academisation. Back when I was a councillor in the 1990s my local authority ran all the schools, and amongst them were two schools for SEN pupils (in the days before D was added to the acronym). It would have been fairly easy in those days if there was an increase in demand, to repurpose an existing school (one secondary school was converted into a teachers' centre and was used by schools across the Borough for, amongst other things, specialist teaching using facilities that were not in all the schools). By taking away from local education authorities the facilities for providing education for the majority of schoolchildren, successive governments also took away the flexibility that allowed them to cope with changing numbers of SEND schoolchildren, forcing them to use private, usually out-of-Borough schools with the results we have seen.
There is also the fact that there is little incentive to build a good specialist state school, because if the parents manage to get the EHCP to say they need a (three times more expensive) private school instead - even if the state school would be entirely adequate - then the council is forced to fork out for it.
(P.S. I don't blame the parents, who are just doing what most would - trying to get the best for their child).
The presence of TAs does benefit the other kids by occupying a child who might otherwise be disruptive. But a full time TA may not be the most cost effective way to do that.
This sounds like a good idea. Lots of the failings of the state at the moment seem to be the government levying statutory duties onto other bits of the government without considering potential costs.
Yes, that's very true. But there may be other, and better ways (in some cases - in others there may not!).
Totally agree re the bits of government levying statutory duties on other bits (also, in planning, bits of government challenging other bits of government).
EEF does a lot of good work but, unlike NICE, it has no ability to make binding decisions that certain interventions are not value for money and that taxpayer money cannot be spent on them.
That's the hard edge of what NICE does and is what I'm suggesting is needed to control costs here, otherwise compassionate individuals confronted with hard choices will (understandably) continue spending more to achieve marginal, or unlikely (but not impossible) benefits.
"However, it’s th only" is only missing one letter!
"And that matters, because the proportion of people" whose sentences give out part way through is
"personal challenges by be excused". In fairness by be is a terrible personal challenge.
"Without being presriptive" especially about spelling.
I have assessed the word "assessess",
And decided it has too many 's's.
I agree with you on the problem. I don't know whether such a body would work in practice or just generate more pointless paperwork (the difficulty with the paperwork is rarely that it's completely pointless - that you can often get people to stop - but that it has some niche point which doesn't justify the weight of the paperwork). I realise NICE does work, and work very well, but the more you think about it the more surprising that is, and the more you think "I guess this was set up in an era where government was still capable of doing things."
I continue to enjoy and appreciate your typo-spotting!
Yes, I'm also always slightly surprised that NICE works as well as it does, and share your doubts about current state capacity. On the other hand, at some level, you have to either put some faith that the state can deliver stuff or else go full DOGE, and given we have an existing model that is working here, trying that first seems worth a shot.
One of the most refreshing articles I have read in SEN/SEND for ages. I was Head of SEN for 2 Welsh LEAs. The points Iain makes are very accurate in costs and knowledge of ‘the sector’. The system as it is is prone to untoward pressure from politicians, media, lobby groups, schools and parents. It is actually dysfunctional, inefficient and ineffective. And if SEND is unbalanced, the whole system is listing badly. That’s where we are. Would a NICE for SEND help? Well, can’t get any worse, can it.
> ‘Pathological Demand Avoidance’, used to describe a person who does not like to be told what to do.
This is categorically not correct, and I sincerely hope you're simply misinformed.
PDA is a 'profile' of autism, and is only diagnosed as part of an autism diagnosis - and that's only if you're lucky enough to get professionals who 'believe'. For a NICE compliant diagnosis, that is delivered as part of a multi-disciplinary team including paediatricians, speech-and-language, psychologists, etc. I find it extremely helpful to remember an alternative acronym - Persistent Desire for Autonomy - one that likely outstrips peers by an order of magnitude.
Based on the last year of my life, I think you can try to define this from inside out or outside in.
From the inside out, it's not a case of not liking being told what to do - it's 'demands' causing "acute stress response", AKA fight-or-flight. What are demands? Demands could be explicit, like someone telling (or even nicely asking) - but they can go much further. A restaurant menu is a demand to choose from a limited set of options. A bedtime or morning routine (not the requirement to be in bed or out of the house, but the steps leading up to it). A social expectation, e.g. everyone else is sitting down. The internal need to eat, go to the toilet, sleep, arrange clothing or drink water, completely unprompted/unspoken by anyone else. An offer to watch, literally, your favourite TV program on the planet, or eat your favourite food. Praise for something good is a demand to repeat it in the future. Not all of these, not every time, but enough that a PDA child can spend entirely too much time in an extremely stressed state, that they can't explain - because nobody gives them the words to explain (or they're not old enough to understand) that the everyday world around them of restaurant menus, routines, socialising, biological needs and praise is regularly inducing terror.
From the outside in, we must not forget that they are autistic - a condition that I assume isn't being questioned here. They experience the same communication difficulties, behaviours and interests and sensory processing challenges. But the common thread running through PDA people seems to be that little or none of the common advice works, at all, or worse backfires. For example - star charts are often recommended, but that's a whole bunch of demands - to get stars, to get to a target number, to NOT get a star when it hasn't been earned. You might be saying that the point of the star chart is to teach them the behaviour you want - but is that method worth arousing their nervous system so much that their higher brain function switches off and their sole option is to run away or attack you? Would you want to do that to your children? Another example: routines are hugely helpful for autistic people in helping manage and make sense of the world - they know when stuff is happening, what's expected of them and by who. I think you can guess by now that's a demand. A parent of a neurotypical kid probably doesn't care whether their kid puts pyjamas on before brushing teeth or after. A parent of an autistic kid is told to have a strict routine. A parent of a PDA kid is two levels deep, trying to remember to let them put their own toothpaste on their brush, no matter how badly they mess it up or tired they are.
Another fun feature - equalising - where their persistent desire for autonomy means they feel the need to equalise a relationship with power dynamics - e.g. parent and child. So the parent is getting forcefully asked to do a silly dance, or to do the child's colouring/phonics reading/practice for them. Or the child will disagree on verifiable facts to try and take control of a conversation.
70% of children with PDA are not in school. Are the children not in school being diagnosed with PDA, or are the PDA kids not going to school because none of the common advice works and the PDA advice isn't widely distributed? I'd say the latter.
> So, completely unlike every other two-year old ever, then.
If I filter out the unhelpful sarcasm here, I think you're saying that every two-year old exhibits what are called "demand avoidant traits". You're correct. (Incidentally, the parent/teacher advice for PDA can help all children in those moments.) Pathological demand avoidance is when this rises to the level of deeply affecting their every waking moment in way that you or I are not equipped by default to understand. You can draw a parallel to the main diagnosis of autism - many or all people experience something on some of the multiple spectrums that make up autism, but you don't get diagnosed if they don't rise to an observable level impacting your life. Same with ADHD - that has to be impacting two areas, e.g. school and home, or work and home.
> Some of the new diagnoses and syndromes appear to have little contact with reality
“There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.”
I'd encourage you to take a look at https://www.pdasociety.org.uk/what-is-pda/ and linked pages. If you can make one PDA person's life better with your understanding, then then we’ve done something good today.
I don't disagree that more of an evidence base would be very useful for making decisions about school spending. But I'd note that (1) class sizes in primary are now too large for any one teacher to accommodate different learning styles or pace of learning, which means unlucky kids can't learn unless they get extra help. (2) The curriculum requires all children to develop at the top of the bell-curve to thrive in primary school - too quick, you get pulled back into very boring "mastery"; too slow and you're left behind by the rest of the class with no accommodations unless you are diagnosed SEND and/or get an ECHP. And also (3) never forget that school spending (much like NHS spending) is a postcode lottery. You are very lucky to have what sounds like relatively easy access to Great Ormand Street. Those of us not in commuting distance of the best postcode for our ailment are still dying or becoming disabled because we weren't lucky enough to live in the right place.
Also, to what extent have you taken inflation / value of the £ into your calculations?
About 30% of the cost increase is inflation, the remaining 70% is genuine increase.
I wouldn't characterise it as 'easy' access to GOSH but I accept that living near London does make this more available than it is to those in other parts of the country.
And largely agree with your point on (2),
This is also a side-effect of academisation. Back when I was a councillor in the 1990s my local authority ran all the schools, and amongst them were two schools for SEN pupils (in the days before D was added to the acronym). It would have been fairly easy in those days if there was an increase in demand, to repurpose an existing school (one secondary school was converted into a teachers' centre and was used by schools across the Borough for, amongst other things, specialist teaching using facilities that were not in all the schools). By taking away from local education authorities the facilities for providing education for the majority of schoolchildren, successive governments also took away the flexibility that allowed them to cope with changing numbers of SEND schoolchildren, forcing them to use private, usually out-of-Borough schools with the results we have seen.
There is also the fact that there is little incentive to build a good specialist state school, because if the parents manage to get the EHCP to say they need a (three times more expensive) private school instead - even if the state school would be entirely adequate - then the council is forced to fork out for it.
(P.S. I don't blame the parents, who are just doing what most would - trying to get the best for their child).
The presence of TAs does benefit the other kids by occupying a child who might otherwise be disruptive. But a full time TA may not be the most cost effective way to do that.
This sounds like a good idea. Lots of the failings of the state at the moment seem to be the government levying statutory duties onto other bits of the government without considering potential costs.
Yes, that's very true. But there may be other, and better ways (in some cases - in others there may not!).
Totally agree re the bits of government levying statutory duties on other bits (also, in planning, bits of government challenging other bits of government).
Perhaps the educational equivalent of NICE could be called the National Association of Secondary and Tertiary Institutions (NASTI)?
Worth noting that this is not a million miles from what the EEF does, although their focus is different https://educationendowmentfoundation.org.uk/about-us/how-we-work.
EEF does a lot of good work but, unlike NICE, it has no ability to make binding decisions that certain interventions are not value for money and that taxpayer money cannot be spent on them.
That's the hard edge of what NICE does and is what I'm suggesting is needed to control costs here, otherwise compassionate individuals confronted with hard choices will (understandably) continue spending more to achieve marginal, or unlikely (but not impossible) benefits.
"However, it’s th only" is only missing one letter!
"And that matters, because the proportion of people" whose sentences give out part way through is
"personal challenges by be excused". In fairness by be is a terrible personal challenge.
"Without being presriptive" especially about spelling.
I have assessed the word "assessess",
And decided it has too many 's's.
I agree with you on the problem. I don't know whether such a body would work in practice or just generate more pointless paperwork (the difficulty with the paperwork is rarely that it's completely pointless - that you can often get people to stop - but that it has some niche point which doesn't justify the weight of the paperwork). I realise NICE does work, and work very well, but the more you think about it the more surprising that is, and the more you think "I guess this was set up in an era where government was still capable of doing things."
I continue to enjoy and appreciate your typo-spotting!
Yes, I'm also always slightly surprised that NICE works as well as it does, and share your doubts about current state capacity. On the other hand, at some level, you have to either put some faith that the state can deliver stuff or else go full DOGE, and given we have an existing model that is working here, trying that first seems worth a shot.
One of the most refreshing articles I have read in SEN/SEND for ages. I was Head of SEN for 2 Welsh LEAs. The points Iain makes are very accurate in costs and knowledge of ‘the sector’. The system as it is is prone to untoward pressure from politicians, media, lobby groups, schools and parents. It is actually dysfunctional, inefficient and ineffective. And if SEND is unbalanced, the whole system is listing badly. That’s where we are. Would a NICE for SEND help? Well, can’t get any worse, can it.
I recently came across this 2012 proposal from Ruth Puttick: "Why we need to create a 'NICE for Social Policy'".
https://media.nesta.org.uk/documents/why_we_need_to_create_a_nice_for_social_policy.pdf
Hadn't come across that - but not surprised someone has had the idea before!
> ‘Pathological Demand Avoidance’, used to describe a person who does not like to be told what to do.
This is categorically not correct, and I sincerely hope you're simply misinformed.
PDA is a 'profile' of autism, and is only diagnosed as part of an autism diagnosis - and that's only if you're lucky enough to get professionals who 'believe'. For a NICE compliant diagnosis, that is delivered as part of a multi-disciplinary team including paediatricians, speech-and-language, psychologists, etc. I find it extremely helpful to remember an alternative acronym - Persistent Desire for Autonomy - one that likely outstrips peers by an order of magnitude.
Based on the last year of my life, I think you can try to define this from inside out or outside in.
From the inside out, it's not a case of not liking being told what to do - it's 'demands' causing "acute stress response", AKA fight-or-flight. What are demands? Demands could be explicit, like someone telling (or even nicely asking) - but they can go much further. A restaurant menu is a demand to choose from a limited set of options. A bedtime or morning routine (not the requirement to be in bed or out of the house, but the steps leading up to it). A social expectation, e.g. everyone else is sitting down. The internal need to eat, go to the toilet, sleep, arrange clothing or drink water, completely unprompted/unspoken by anyone else. An offer to watch, literally, your favourite TV program on the planet, or eat your favourite food. Praise for something good is a demand to repeat it in the future. Not all of these, not every time, but enough that a PDA child can spend entirely too much time in an extremely stressed state, that they can't explain - because nobody gives them the words to explain (or they're not old enough to understand) that the everyday world around them of restaurant menus, routines, socialising, biological needs and praise is regularly inducing terror.
From the outside in, we must not forget that they are autistic - a condition that I assume isn't being questioned here. They experience the same communication difficulties, behaviours and interests and sensory processing challenges. But the common thread running through PDA people seems to be that little or none of the common advice works, at all, or worse backfires. For example - star charts are often recommended, but that's a whole bunch of demands - to get stars, to get to a target number, to NOT get a star when it hasn't been earned. You might be saying that the point of the star chart is to teach them the behaviour you want - but is that method worth arousing their nervous system so much that their higher brain function switches off and their sole option is to run away or attack you? Would you want to do that to your children? Another example: routines are hugely helpful for autistic people in helping manage and make sense of the world - they know when stuff is happening, what's expected of them and by who. I think you can guess by now that's a demand. A parent of a neurotypical kid probably doesn't care whether their kid puts pyjamas on before brushing teeth or after. A parent of an autistic kid is told to have a strict routine. A parent of a PDA kid is two levels deep, trying to remember to let them put their own toothpaste on their brush, no matter how badly they mess it up or tired they are.
Another fun feature - equalising - where their persistent desire for autonomy means they feel the need to equalise a relationship with power dynamics - e.g. parent and child. So the parent is getting forcefully asked to do a silly dance, or to do the child's colouring/phonics reading/practice for them. Or the child will disagree on verifiable facts to try and take control of a conversation.
70% of children with PDA are not in school. Are the children not in school being diagnosed with PDA, or are the PDA kids not going to school because none of the common advice works and the PDA advice isn't widely distributed? I'd say the latter.
> So, completely unlike every other two-year old ever, then.
If I filter out the unhelpful sarcasm here, I think you're saying that every two-year old exhibits what are called "demand avoidant traits". You're correct. (Incidentally, the parent/teacher advice for PDA can help all children in those moments.) Pathological demand avoidance is when this rises to the level of deeply affecting their every waking moment in way that you or I are not equipped by default to understand. You can draw a parallel to the main diagnosis of autism - many or all people experience something on some of the multiple spectrums that make up autism, but you don't get diagnosed if they don't rise to an observable level impacting your life. Same with ADHD - that has to be impacting two areas, e.g. school and home, or work and home.
> Some of the new diagnoses and syndromes appear to have little contact with reality
“There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.”
I'd encourage you to take a look at https://www.pdasociety.org.uk/what-is-pda/ and linked pages. If you can make one PDA person's life better with your understanding, then then we’ve done something good today.