The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

@Lougle 2.5 hours sounds like the perfect length for a prom but I’m old so 1 hour would be even better! Hope they have a fab time.

The daily worry of climate change is overwhelming to listen to. Heatwaves on the longest days of the year are the hardest, in another month the sun will be setting earlier.

@TheGoodCat I suspect you cope better than me with the monologue. I've been very overwhelmed and can be heard saying 'I don't know what you want me to do about it!' or 'If I knew anything, I'd tell you!' I am not winning Mother of the Year right now.

I'm a bit deflated.

• Two providers are full (expected).
• The one I was most hoping for have responded to say that DD1 is different to their current cohort so they feel they aren't appropriate.
• Another provider has asked how mobile DD1 is because they have a huge site that is largely not wheelchair accessible, and has uneven and sloping ground. DD1 won't cope with that.
• One more has said that they can't offer residential because they are a day college. The LA are asking for a day place but it's 1½ hours away and DD1 won't cope with the journey.
• The one that people say 'not with a barge pole' hasn't yet responded
• The one that looks great but is slightly further away hasn't yet responded.

DD1 is mentally packing her suitcase and asks for updates at least 15 times per day. She said that she just wants one thing to work so she doesn't feel everyone hates her.

@Lougle I would look at some options further away and ask the LA to consult with any you think may work. I would do this now rather than waiting for the remaining consults because some are 38 week placements and while placements mostly have someone available to contact over the summer, it is much easier to do this before term ends.

Has anyone seen the government’s EOTAS consultation out today? It is clear the aim is to bring more (?all) DC back under the remit of schools even if they don’t attend.

No, I have been reading up on the 30g diet, which I discovered the other day. I ordered the recipe book and I’ve been studying it!

It’s ideal for DD1 as she needs 30g of protein per meal and 30g of fibre a day, and the average calorie intake is 1500 - 1800 per day. (She needs to lose weight, as do I!)

She’s coming home on Sunday for a week.

It doesn’t surprise me though - the government seems intent on rolling the SEN clock, back to pre Warnock! The question should always be - why was this system brought in, in the first place? What problems was it trying to alleviate?

Thanks, I need a practical steer. I was surprised that The Sheiling weren't even prepared to meet her.

@Lougle I suspect it is because DD1 is more verbal than many of their students. Personally, I don’t think that is necessarily an issue, but they can afford to be selective if they do. If you think it could work, you have nothing to lose by going back to them to try to discuss their concerns. Sometimes placements won’t entertain those, but sometimes they will.

It is also worth knowing sometimes wholly independent placements won’t reply to consultations. Some only reply if their response is positive. For non-wholly independent settings, no response is taken as a negative response.

@LathkillDale some won’t be happy until DC with SEN have no right to an education. Again!

Re. EOTAS, I'm torn. I know some children absolutely need to be educated outside the school system. I know that some EOTAS packages provide a good education for young people. However, I read horror stories on Facebook of packages that consist of 1 hour of something like Mindjam and 2 hours of tutoring, or packages that take a year to put in place, then are dismantled 2 months later at annual review, or parents are told to pay for provision, get receipts and then the LA don't pay. If a parent was providing that level of 'education', they'd be given a SAO.

I also think that, whatever the motives, it can't be argued against that some yp are requiring EOTAS packages directly because of poor educational experiences, rather than their SEN themselves. If provision in schools and APs improved, there would be less EOTAS requirements.

The difficulty, as I see it, though, is that in order to make the changes that would result in a lower need for EOTAS packages, there needs to be substantial investment in education on both a ground floor level and through better education for staff. Secondary schools are too big and impersonal. There needs to be change in the school system. Unfortunately, I fear that the Govt. (and all Govts.) have a mindset of 'we need to save money, then we can reinvest it where it's needed most'. What they need to say is 'We need to spend a shed load of money and it's going to hurt, but in 10 years time we'll save all of it and more.'

If the school, and by extension the LA, had spent a few grand on DD2, they would have saved at least £250,000 on her education over the last few years.

If they had better systems in place, DD3 wouldn't have needed the last couple of years of special school.

I shudder to think what the true cost of failing DD1 is in the long term.

So I guess that overall, I think children do exist for whom no educational setting will do (looking at you Mr complex @inthequietofdawn's DS1!) but I think they are rarer than we see currently. I think that most children who require EOTAS are simply victims of a system that is badly organised and badly funded, run by people who are so invested in their model of 'education' that they refuse to see when it is failing a subset of children. It's so endemic that the failure is baked in and accepted as inevitable. 40% of children fail their GCSEs each year by design. How can that be right?

Support is seen as as temporary measure to get a child over a hump. The moment they respond to the support, it's taken away. Crazy!

I could go on. TLDR: I think that quite a lot of the consultation is saying the right thing, but based on the wrong premise and drawing the wrong conclusion.

Am on Scout camp. Signs are looking good that DS will sleep in the Scout tent and not in my tent.

Amazing! I hope he has a great time.

The girls went to prom and survived it.

Wins all round - DS could be heard telling the others in his tent his life history and had to be told to pipe down (as had the other boy) late last night then up this morning to play football and frisbee. No fits yet but bracing myself, though I think everyone will cope.
When we were packing last night he was in "not processing single step commands" mode which is what we think may be stealth seizures but later on was managing much better.

@drspouse lovely to hear the Scout camp has gone well.

@Lougle glad DDs enjoyed the prom.

I completely agree fewer DC would need and meet the current threshold for EOTAS if more support was forthcoming earlier.

I also completely agree with your point around inadequate packages. Although, like some aspects of the wider SEND consultation, that isn’t a direct problem with the current legislation. It is a problem with the implementation by LAs who are ideologically opposed to EOTAS and too focused on saving money. A lack of serious repercussions for unlawful behaviour doesn’t help.

However, shoehorning DC into placements that don’t meet their needs isn’t the answer. Reform of the SEN system isn’t going to magically make these placements suitable. If anything, pushing more into MS is going to have the opposite effect.

I don’t see how schools could ever run EOTAS packages, whether in conjunction with LAs or not, either. It is far too much work. Many don’t understand the law around EOTAS. Some don’t even know what it is. LAs like schools to be involved currently because they see EOTAS as having a lack of control/oversight. LAs could avoid that by including a proper MDT as part of all packages, including having an EOTAS co-ordinator as part of all packages. If the funding comes from the school’s budget, they will also have an incentive to limit provision. It’s not like schools are forthcoming funding AP for DC on their rolls now.

It is not a consultation. It is a tick box exercise with an agenda regardless of the cost to some disabled CYP and their families.

"I don’t see how schools could ever run EOTAS packages, whether in conjunction with LAs or not, either."

"The school system is so inadequate for this child that it wouldn't be appropriate for them to be educated in any school. Let's ask a school to run the package they couldn't provide."

bad provision at school, bad EOTAs, bad MH for children and parents, relationship break downs, more MH care and in patient care needed, more strain on welfare and NHS. It all feels draconian with a whiff of return to workhouse and institutions. When there are not enough resources to go round disabled people get disproportionately hit time and time again.

I had a very quick reply from the practice nurse. The school nurse team have agreed to do a vaccination home visit.

Well, as I was reading yesterday, if the cost to society of undiagnosed ADHD is £17 billion, how much more is the cost of all the other undiagnosed/untreated SEN?

I was also reading recently, the tax gap for the last year (2025/6 ?) was over £59 billion. Nobody seem to see it as a priority to fund the collection of that!

DS doing very well on camp, slept all night in the boys' tent, I've been trying to follow him round as per Scout leader instructions (was a bit pissed off when I asked about a minor first aid issue and was told I had to do it, but that was by a parent helper who perhaps was annoyed I wasn't helping with cooking!).
He really doesn't need a 1:1 except for his tendency to wander off - except that is age appropriate also. He's done various activities, bent the ear of the leaders he liked (he's won round the one he had an issue with last year) and spent a lot of time playing frisbee or some variety of ball with random boys.
We visited the Explorers at their sub camp and I think we will get on to visiting a couple of units in the autumn.

@TheGoodCat that's great news!

Glad camp is still successful @drspouse

Tough day here. DH was going to set off to London and was picking up his brother this morning. I had a bit of a meltdown because DD1 has been so hard this week, next week is rammed with driving test, CPA meeting, school fete, charity event, leavers day, etc., the kitchen is still in disarray from the repairs to the utility room...it's all too much. Anyway, he got to his brother's house and decided to come home. I feel awful, but I was so grateful too.

I just don't know what to do with DD1. She's so agitated. She keeps asking about different plans for when she goes to 'stay over college' and whether I think it would be best for her to come home at weekends, or whether she should stay until the holidays because she doesn't think she'll cope with the travelling back and forth, and she's on high alert, policing every conversation I have, every email, every letter, every phone call. I'm not coping well and I've ended up saying that she's driving me batty. That doesn't help because she says sorry, feels terrible, but then the compulsion takes over and she starts again.

DDs 2&3 aren't coping with DD1's behaviour either, because when she's not doing the above, she's asking them if they're ok, telling them that she hopes they have a nice time doing x, y, z, that she's glad they have a good school, checking that they're enjoying their 'relax time' (which then isn't relaxing...).

I also need to see what CAMHS are going to do about DD3's ADHD meds. She needs an alteration but she was put on a waiting list last year.

@Lougle - she was put on a waiting list last year?

Yes, it's a long story. She was privately diagnosed with ADHD, then GP refused to do shared care as per guidance from GMC. So I had to get CAMHS to ratify the private report, which they did after checking it and the clinician. GP still refused to do shared care because the private Psych was still responsible for her medication. CAMHS agreed in principle to take over her care, but wanted to put her on their waiting list for an appointment before taking over her meds. I threw my toys out of the pram and asked for their official complaints procedure, then CAMHS decided they could take over her care straightaway after all. So CAMHS wrote to the GP surgery saying 'we are now responsible for DD3's care, please prescribe her medication.' GP said 'OK'. We had a single appointment with a FY1 doctor who had started 2 weeks earlier, who looked at her meds and said 'ummm....ok.....we'll just monitor.' Now, I get letters every so often reminding me that she is on the waiting list, they are very busy, but if I think she'll kill herself, there are numbers I can call.

Trouble is, she is finding that it wears off really quickly (under 2 hours) but we've also had a few incidents where she's taken it in a hurry and not eaten enough, and it either makes her wacko crazy or incredibly grouchy and angry. Plus, when it wears off, she's crashing and feels so tired - she asked today if she could have anaemia because she's so exhausted.

Being a tall, picky vegetarian doesn't help, but she never used to get this exhausted.

Is it the warm weather disrupting the medication @Lougle . I know several affect body temperature control. On the other hand we found with ds2 and anti-psychotics that the longer he was on it the more unstable he got - we never really did get a satisfactory answer as to why but he was better off them. But he does not have the same level of difficulties as your dd1 so perhaps was easier for us to separate the medication effects from ds2 just being ds2.

I am horrified by the EOTAS reform ideas. Like all the recent reforms it seems to focus on the consequences rather than the cause.

For ds2 we tried mainstream - it failed, we tried an ARP - it failed, we tried a special school - it failed. Then and only then did we try an EOTAS arrangement which worked for him both academically but probably more importantly helped his mental health. So why would you try to stop something that worked and replace it with something that had already been proven to not work for him. In his case his package cost less than his special school placement (although I know it depends on the provision in the package and the special school). I am also concerned that if schools ran the EOTAS arrangement it would be like the work sent home when the ds's had exclusions i.e. a few worksheets sent home with no direct pupil-teacher involvement. If they truly want to reduce EOTAS then maybe they need to ask what is the pupil profile who end up with an EOTAS arrangement and then ask what changes they can make to schools so that these pupils can cope.

@TheGoodCat I’m glad you have sorted the vaccines.

@Lougle on the topic of vaccines, if DD1 is going to start a residential college, she should be eligible for the MenB vaccine. Most of the talk is about those going to university, but the NHS roll out covers those going to residential further education.

@OneInEight I don't know really. We're back in the spiral. She's incredibly angry tonight. It's chaos.

@inthequietofdawn thanks for that. I'm struggling to imagine that any college is going to accept her tonight. I've contacted St John's and Oakwood Court.

The physio has written a letter that says

"DD1 would need 1:1 [hydrotherapy] sessions to support her delayed information processing and interpersonal skills. DD1 needs the support of someone who can adapt their communication and allow for increased time to support her information processing. I am aware that she has access to some funding, but this does not cover physiotherapy. I truly believe physiotherapy that may encompass hydrotherapy, learning disability/neurological support would be greatly beneficial for DD1 to support her symptoms and function further."

I don't know if that's going to be enough to add it in to the EHCP, but I've sent it across to her Caseworker.

@Lougle I’m not sure Oakwood are suitable.

Some of the options are section 41 approved, so don’t need an offer of a place. So if you think one of those can meet needs, the LA could name them anyway and you can appeal for them if they don’t. Although obviously for residential placements, the ones who are genuinely at full capacity for borders aren’t going to be winnable.

The physio’s wording could be stronger (e.g. need and would be beneficial doesn’t mean must receive and it doesn’t say frequency or length of sessions), but it is a good start and better than a lot of evidence. I would go back to her and ask her to at least add frequency and length of sessions.

Thanks again. I've emailed The Sheiling to say that I would like to understand why they thought DD1 was not a good fit, and why they weren't willing to at least meet her. I don't think at this stage we'd want to go further than 1.5/1.75 hours away.

What would make Oakwood unsuitable @inthequietofdawn ? Is DS1 any better?

@Wellzizizbetter how is DS doing now?

@Lougle not great this evening. He’s very bruised from a seizure but it has focused my mind and I am going to move dh out of his study and move ds in there so his bedroom can just be a bedroom and be empty apart from bed and bedside table. It will take a few months to sort out but safer. It’s a bit hard at the moment.