EHCP support thread

[Phineyj]

My DD (10) is being assessed for EHCP. The council refused to assess (despite her already being diagnosed with ADHD, ASD, hypermobility and vision problems following eye surgery).

School have been supportive throughout and they are going above and beyond to keep her engaged in education.

She's about to go into year 6 though.

I took the LA to the tribunal and won.

They must produce the plan by 4th August. I think they probably will (they've stuck to deadlines so far...ish...). But I've got all the IPSEA complaint letter templates primed!

The hardest thing about the whole process is that no-one else in my life understands it or what it's like to spend all your free time essentially begging people to document the deficits your child has.

It is also a hard realisation that no-one cares much about your child's education except you.

I am also a teacher so I feel sad on behalf of the SEN DC I teach as I am told little about their needs (I spent a whole day doing DofE with one recently...I don't even know what her EHCP says...)

Join me if you are also grimly trekking through the EHCP jungle!!

@listlesscat personally, I wouldn’t allow the LA to breach the timescales without challenging them. If you give the LA an inch, they will take a mile. If allowed to act unlawfully without question from you, they will continue to do so. You need to show the LA you know the law and will advocate and enforce DC’s rights. Allowing them to delay also means any potential appeal will be delayed.

Thanks @ThomasWasTortured but what more do i do to challenge them? I've complained, and escalated to director of chiredren's services. I could not find any official way to complain about the LA's own admin.
Is this the time for a lawyer?

Just got our tribunal date for refuse to issue - first Tuesday in September. Argh! That's almost two years from when I originally requested the ECHNA. This isn't right, is it? You should be able to secure an EHCP for a phase transfer in less than two academic years :( especially when you already have diagnosis and all reports. And yes I did put phase transfer all over it and said we'd accept a paper hearing.

The deadline for sorting the paperwork is much earlier though (Feb)- does that mean it could in fact happen more quickly?

@listlesscat email the Director of Children’s Services again reminding them of the statutory duties and threatening JR if they fail to comply because they are frustrating your right of appeal. If that’s fails, you will need a pre-action letter.

@Phineyj did you specifically request an expedited hearing? The deadlines are usually early. It doesn’t mean it will be moved sooner. It may be moved earlier, but it may not. There may be a chance of an August date even if it isn’t moved to before then. The LA may stick to the deadlines or they may be given multiple chances to comply.

I put phase transfer in the subject line of the email which is what their guidance said to do. And I wrote about 15 pages summarising all the reports and linking them to what has been provided to meet need at primary and why an EHCP was needed for each need to be met at secondary. Plus obviously the phase transfer info is on their form.

I honestly don't think I could have done more.

Try requesting an expedited hearing via a SEND7 form.

OK, will do, thanks.

@Phineyj My appeal was also phase transfer and it did not make any difference at the time of submission.

I sent in a Send7 form with reasons for an expedited date and it was accepted. It only shaved a few months off the waiting time but it was better than waiting.

That's so useful, thanks!

How is everyone getting on with things?

I had a meeting with useless school today who offered more useless advice to get DC in to school, they simply do not understand DC needs.

I have been researching EOTAS but very worried about how this will work as DH and I both have roles which can not be from home full time.

Ideally I would want DC in a SN school for a few days per week with tutoring for the other two days. One SN school we like could meet all needs except academic but it could work if DC could access tutoring too.

Does this idea seem out of reach or impossible?

@HellHathNoFuryLikeASENMom you can’t be compelled to organise, deliver or facilitate an EOTAS package even if that means the LA has to fund someone to do just that. So, you don’t have to give up work. However, you will probably have to appeal. DS1 has EOTAS. He has a full time HLTA (actually 2 HLTAs because the role is too much for one individual) on top of tutors/therapists etc.

Your idea isn’t impossible.

@ThomasWasTortured wow you did amazing for your child - however your brilliant at all the laws / sen things.

Aside hope you don’t mind asking me some questions no probs if you don’t want to answer them - how often are the HTLA sick / ring in sick / have an Apt? What time do they enter your house? Leave your house? Was it an absolute nightmare to find them / keep them on roll? Did you have to recruit them? Does the LA pay the absolute minimum wage for them so harder to recruit

What happens if they are sick do you have to jump into their roles?

This is one of my main worries as if they are unreliable then it all might / could come back onto you 😬 fine for the odd day but long term sickness 😬 or your child wanting you to be the HLTA and doesn’t get along with them (suppose everything take times to gain a relationship)

Thank you x

Thanks for the post MrsLamb I see some traits of what I think is PDA in my DD but that’s not attributing a responsibility to her in my eyes- my reading of what’s going on is that she gets so anxious and stressed she just can’t cope at all with certain demands and feels very threatened if I try to force it. It’s incredibly hard to deal with and I would love any support or training I could get to help cope with that.
i don’t know enough about the dispute around this but also i am very wary of arguments which might not listen to parents experiences on the ground.

I’ve heard enough about it that I would not seek any kind of a PDA diagnosis for her because I read on here that schools could discriminate against her by not accepting her to the school which would be discrimination but I feel I can’t risk it given the likelihood of school places needing to be changed

As I understand it (and I've only read a few things), no one is disputing that some autistic people respond to extreme anxiety by attempting to reduce the demands made upon them, by increasing their control over their environment, or that this has significant consequences for the daily life of young people and their familes. I think the dispute is about naming/classification, and whether you label that as a personal pathology, or understand it as a response to the poor 'fit' between the autistic person and how life is organised in a neurotypical world?

There are also some interesting theories about how daily life for autistic people can involve a succession of micro traumas (when monotropic concentration patterns are continually disrupted), as well as the well documented increased exposure to traumatic experiences of victimization. This has led some people to make the connection between demand avoidance and trauma, and the increased need for personal control as a trauma response. I'm not up to date with the debate so I'm trying to tread carefully!

I think the question of care givers is interesting. Again, for entirely reasonable reasons, the role of parents/carers has been critiqued, given their voices and needs have historically displaced those of autistic peole themselves (eg. in research, in the clinic etc). Whilst I personally think that is unarguable, that leaves a massive blind spot around the experiences and needs of carers themselves, who are persons in their own right, but in a similar way to autistic peole, are not always afforded full human rights. This thread is testament to how the role of caring for an autistic person experiencing daily challenges and distress due to this poor fit with a neurotypical environment, and who is therefore not behaving in a way which is considered 'normative', is a massively stigmatise social identity which attracts social opproprium and organisational blame. This is ultimately reflected in the poor health and reduced life expectancy of both autistic people and carers. I think we need a Critical Carers Studies to accompany Critical Autism Studies...

@fedupallthisrubbish the full time HLTA is a relatively recent addition. Previously, DS1 only had part time HLTA hours to cover the second adult for the provision outside the home and act as an escort. At that point, we didn’t pursue full time to cover the second adult at home because one of us was typically at home anyway or we could arrange it so one of us was (occasionally we had to use DS1's PA hours) and once settled with a tutor/therapist it wasn’t too bad. Last year we decided the time was right to pursue it. With hindsight we should have done so sooner because of the waits for hearings. I should have realised this when I was supporting others to get a full time TA/HLTA/LSA/mentor/specialist teacher etc. when DS1 didn’t have that.

The existing HLTA who had previously been covering the part time hours has been with us years and is amazing. Found via word of mouth. She has only been absent twice, once for the period of time she had covid and once for an appointment for her DC. I covered both of those times. She has built an excellent relationship with DS1. The HLTA who is newer hasn’t been with us long enough to accurately comment on sickness record, but has missed 1/2 day for an appointment. This was covered by the other HLTA - which is the benefit of now having 2.

Recruiting - I could have said to the LA you find someone, but I wanted to be involved. Finding the right people is important. The second HLTA post was first filled with someone else who I thought was the right match, but wasn’t. She left very quickly because she didn’t expect there to be so much personal or medical care. She knew full well what was involved from the interview, trial shifts, and training, so that was infuriating.

They get more than minimum wage. They are HLTAs and are paid more than they would receive in a school setting in acknowledgement of DS1’s complex needs. LAs must fund the provision at a level that means it is actually deliverable, no-one would take the role at min wage.

For the term time provision, DS1 has enough funding for 8.30-5 (although we actually use slightly more some days and finish a bit earlier on Fridays). Not all of it is in the house. It seems a lot but if you think about it, many DC attend school 9-3.30 (i.e. 32.5hrs per week) and then travel an hour each way. It just so happens the travelling in DS1’s EOTAS package isn’t all at the beginning/end of the day and the HLTA acts as the escort rather than a different PA as is the case with most DC who attend school who require an escort.

The number of DC receiving EOTAS is growing all the time. Because there is more knowledge and understanding of what EOTAS can be and what the LA’s responsibilities are, more are receiving a package that doesn’t involve their parents delivering/facilitating it. As it should be.

Just to point out, because EOTAS packages are bespoke, some have EOTAS packages that are completely different from DS1’s. Some don’t have any provision that is delivered at home.

Oops, that was longer that I realised. Apologies for my ramblings.

@LushFloral yes SS can discriminate against pda children (they shouldn’t but do) or can have a point blank no with that diagnosis. However if your child is a true pda child (it’s quite obvious they are and not just highly demand avoidant) then you would want to know that the school can accommodate the child by having a flexible timetable. Otherwise they are slightly busted to start off with and it could likely fail. I’m not surprised at the stats 7/10 pda children are at home as they don’t really fit into any school perfectly as they are generally super smart.

Laura Kirby book on pda is great one of the best I’ve read and Clare Truman.

Ds has been going in this week on a reduced timetable - he has chosen to go in himself if he doesn't have to do any work, now I know this isn't ideal but I thought the main focus was just getting him in the building.
I went to collect him earlier and had the head come out to me and basically say he ds thinks he is "calling the shots" ie taking the piss. Apparently he's been very defiant today and refused to do any work even with 1:1 - wtf am I meant to do with that ?! I defended ds as much as I could but it's really annoyed me. Ds is never defiant he's always been very afraid of being told of etc

Sorry to be clear - I'm annoyed with how ds was spoken about, not ds refusing to do any work. I'm proud of him for even being there

You have my sympathy @losingthe. To offer another example, who would think it a good idea, for a child returning from EBSA, to be placed in a stigmatising monitoring regime, by the person newly allocated to build an attuned relationship, for behaviour arising from a disability?

Doesn't help one bit does it !! This just all adds to the lack of trust they have in the school

Feeling very much like school downplay ds' struggles. All ds says is the work is too hard, that he can't do it, school say he can do it, usually with support but can work independently. I disagree, he lacks the focus to do any work independently for any length of time.
Maybe some of this is that ds doesn't try hard enough ? I don't know, all I know is I see him switch off when I'm talking to him, unless it's about his own interests you've lost him. So I can imagine how hard he finds focusing on schoolwork which he finds boring.

Still nothing in response to my questions about literacy teaching (Year 9 but working at is much lower).

Apart from this, DH is doing all the chasing, as I'm not well (CFS plus recovering from Covid 7 weeks and counting).

I am doing bits on my dyslexia teaching course, which helps mentally. Its stressful as I am behind but if I keep chipping away it does feel like forward motion. CFS can feel like life has stopped so its quite useful to have a focus for small goals each day.

Mentally its like wading through treacle due to brain fog, so I often end up on MN as a break procrastination strategy.

www.instagram.com/p/CzWeKzvOh5s/?utm_source=ig_web_copy_link

Thought this might be of interest to some of you.