What are my options here, DS hardly in school...

[SelkieSeal]

Long sorry, and I'm not entirely sure what I'm asking here 😬 but if your child is unable to manage in school and has been on very limited hours for several years, but you want to go back to work and study full time, what are your options?

My son is 11 and genuinely unable to cope with anything more than extremely limited time in a school setting. He hasn't been in full time school since 2018. He's now on roll at a wonderful small independent mainstream school (named in his EHCP and paid for by the LA) with specialist knowledge around school based trauma on a gradual reintegration basis and currently managing 11.30-3.30 on a Wednesday and 9-11.30 on a Friday, plus a home tutor comes from 9.30-12 on Mondays and Tuesdays. I've happily agreed to this for the last 18 months because the change in my son since starting there has been incredible, he's so much calmer, more engaged, doing fantastic work academically (started Latin GCSE work for example), and the multiple daily violent meltdowns he was having when in mainstream have stopped.

We are verrrrry slooooowly working on building up his time there but...it's slow... and I just want the same opportunity as most parents have to work/study during the day! I'd like to start a law degree next year, and to increase my working hours. But I can't, with my son at home almost all the time. He does get 3 hours a week direct payments and we have an amazing PA who takes him to youth group/the library/swimming/gaming sessions but it's just a drop in the ocean when he's at home needing almost constant input because he's SOOOOOOO BOOOORED for so much of the time 😬 Due to the way most days are cut up by odd bits of school here and tutor there, home ed groups just aren't an option for us and tbh I don't want to go to them because I don't want to home ed, so the other parents think I'm a freak

There isn't another school that I think would suit him better for miles and miles (we live rurally and moving isn't possible), so looking for a different school is not an option. But then what else can I do? Can I try and insist on social care picking up the slack and paying for a PA for all the hours that most children are in school? Can I find a childminder or nanny to look after him all week and claim childcare tax credits to pay for it? Or do I have to just suck it up and carry on as we are (I think I might go mad if this is the case 😭)

Are you against these hours and school are the ones mandating the reduced timetable?

You cannot be required to facilitate DS’s education, even if that means the LA have to fund someone else. This isn’t a social care issue, this is an education issue. You can get a LSA/TA/PA/mentor included in section F to facilitate DS’s bespoke education and therefore paid for by education separate to any social care provision (although I would push for more than 3 hours). The advantage of it being in F is it is enforceable.

You need to ask for an early review of the EHCP (IPSEA have a model letter), and ensure there is more provision in F as the current arrangements aren’t the equivalent of a full time education, which is DS’s right (s.19 the Education Act 1996), and aren’t meeting DS’s needs. This doesn’t have to be at school or tutoring. It could be a mentor/TA to play with/access the community/crafts etc., therapies (SALT, OT, MH therapies), sports (swimming can be included in F), Mindjam (this may interest DS as its gaming based), subscriptions/memberships, equipment. Whatever meets DS’s needs. Although if DS could cope you can also secure additional tuition hours.

As well as asking for an early review complain to the LA’s Director of Children’s Services because DS is not receiving the equivalent of a full time education.

Is DS receiving everything specified and quantified in F? If not, complain to the LA and threaten Judicial Review. If the threat doesn’t work contact SOSSEN for help with a pre-action letter.

I’m in same situation as you. My DS is 5 started reception in sept 21 and it’s still yet to do a full day. His hours are going up each week but he struggles past 11.30/12 he does 8.50-1.10 at moment. But today I had to go get him because he had a meltdown and wet himself bless him and kept asking for me. He is in a mainstream school but I think it’s just too much for him; so going to look around for smaller settings. He just gets really overwhelmed and also has violent outbursts. Really hope you get something sorted with your DS I know how stressful it is trying to get everything in place for our children, it definitely isn’t easy that’s for sure.

@danni0509

Are you against these hours and school are the ones mandating the reduced timetable?

I'm "against it" in that what I want is DS in full time school. But the reality is that every attempt to increase his hours leads to issues starting again, so it does need to be done slowly. When he first started at this school it took 6 months to get him through the door at all, so to have him there without incident for 2 x 3 hour sessions a week is fantastic progress in context. This is a child who had to have 2-1 adult support at all times in his last and was being restrained daily, he broke a teacher's wrist once and bit another one hard enough to draw blood. The damage that level of stress did to him is going to take a long time to undo.

So I don't really know how to answer that... I'm sure if I told the school I wanted him in all day every day they would welcome him but in practice I know it would be a disaster. He honestly can't cope with that much interaction yet, I think we'd see a return to meltdowns and VCB and I just can't go back to that level of stress for us all.

@Imitatingdory

You cannot be required to facilitate DS’s education, even if that means the LA have to fund someone else. This isn’t a social care issue, this is an education issue. You can get a LSA/TA/PA/mentor included in section F to facilitate DS’s bespoke education and therefore paid for by education separate to any social care provision (although I would push for more than 3 hours). The advantage of it being in F is it is enforceable.

You need to ask for an early review of the EHCP (IPSEA have a model letter), and ensure there is more provision in F as the current arrangements aren’t the equivalent of a full time education, which is DS’s right (s.19 the Education Act 1996), and aren’t meeting DS’s needs. This doesn’t have to be at school or tutoring. It could be a mentor/TA to play with/access the community/crafts etc., therapies (SALT, OT, MH therapies), sports (swimming can be included in F), Mindjam (this may interest DS as its gaming based), subscriptions/memberships, equipment. Whatever meets DS’s needs. Although if DS could cope you can also secure additional tuition hours.

As well as asking for an early review complain to the LA’s Director of Children’s Services because DS is not receiving the equivalent of a full time education.

Is DS receiving everything specified and quantified in F? If not, complain to the LA and threaten Judicial Review. If the threat doesn’t work contact SOSSEN for help with a pre-action letter.

Thank you, that's really helpful. I've had review after review of the sodding EHCP and every time the right noises are made but very little changes. They're all like, well until he's engaging more with school it'll all have to wait, oh well we can't do that until he's in school, etc etc. Like he's the problem...

Swimmimg!! There's an idea. He's only ever been swimming with school once, years ago, and it ended with him throwing his entire bag of dry clothes into the pool, causing the pool to be evacuated, and then locking himself in a disabled toilet and me being called to come and get him. I'd love him to go swimming though, he likes the water and I can't swim so I can't teach him myself!

If DS cannot cope full time in school the LA should be making alternative provision, which you cannot be required to facilitate. You don’t have to wait, I would suggest you ask for an early review and appeal as soon as you have the right of appeal, as it sounds like section F needs improving regardless of whether DS is attending a school part time or full time. Not attending school isn’t a barrier.

Swimming is a really common activity to have include in a bespoke package. DS1 has an EOTAS package so slightly different to you which has swimming included, the sessions are a mixture of swimming, hydrotherapy, aqua therapy and allow for a private session each week as DS1 can’t cope with the sensory aspect otherwise.

If DS would enjoy swimming what about rebound therapy, or a pass to a trampolining place, or a personal trainer or climbing? If he likes water what about kayaking?

Leanna does DS have an EHCP? When was he 5? Are the school preventing him from attending full time or do you not think he can cope with full time?

Also @Imitatingdory just to pick your brains a bit more if you don't mind....I can imagine we could probably get more tutor hours if we pushed for that, and more PA hours, and I can certainly fight for a mentor or similar to support DS. But it's all so bitty and that's what is really driving me so mad. There's no decent length of time when I can think straight. It's all short bits of time when what I want is what most parents get which is my child to be occupied by trained professionals in an enriching setting from 8.45-3.30 five days a week! Even with the tutor, I have to be in the house, I'm not supposed to go out and leave them unsupervised.

It's just making it impossible for me to cope, even though DS have thrived on this way of doing things. I feel so selfish saying this. I wish I was a different (ie better, more dedicated) sort of parent. It just all feels so insurmountable.

Actually if DS is 11 is he Y6 or Y7? If Y6 the EHCP should have been amended by 15th Feb for secondary transfer, so you should already have the right of appeal, therefore don’t need to ask for an early review just appeal.

Hes Y7, August birthday so about as young as a Y7 can be! His school goes right through from nursery to A level though.

Sorry Selkie I cross posted and didn’t see your previous reply. As DS is Y7 you will need to ask for an early review.

The LA cannot require you to be present whilst the tutor is there because they cannot legally require you to facilitate DS’s education even if that means they have to employ someone else. Some people with EOTAS (so I realise not quite the same, but your DS does have a bespoke package) have a TA/mentor/PA to cover the second person during tutoring and other provision.

DS1 doesn’t have a second person at home during his tutoring hours (12 hours of tuition a week) or the other provision (SALT, ELSA, play therapy, SIOT, Lego therapy, 2 physio sessions - 1 with physio, 1 with personal trainer) that takes place at home because one of us would mostly be at home anyway and I preferred to fight for other things. However, he does have 12 hours funding for a higher level TA (in F, paid for by education) to cover provision outside the home and travel time. They accompany him to the provision outside of the home (rebound therapy, swimming, OT (to access the community/build independence), 1 physio session with personal trainer to go to the gym and climbing/kayaking (funded for either or once a week)) to provide the second person and be the escort on the journeys. That is separate to his social care PA hours (14 hours, but needs 2:1 so really 7 hours).

What you want is possible, don’t let the LA tell you otherwise.

BTW the fact the school is an all through school doesn’t mean the LA doesn’t have to amend the EHCP by the phase transfer deadlines.

I don't know the answers to most of your questions, but I can answer this one:
Can I find a childminder or nanny to look after him all week and claim childcare tax credits to pay for it?
Yes. If you are eligible for the childcare element of Tax Credits based on your income etc, you can use it during any hours you want. It isn't unusual for working parents who home educate to do this.

@Saracen

I don't know the answers to most of your questions, but I can answer this one: Can I find a childminder or nanny to look after him all week and claim childcare tax credits to pay for it? Yes. If you are eligible for the childcare element of Tax Credits based on your income etc, you can use it during any hours you want. It isn't unusual for working parents who home educate to do this.

Ok that's good to know, thank you. I wasn't sure if help with childcare costs would only be available for any time beyond what they'd usually be school for! As everyone seems to consider school to be 'childcare'

I just don't know how to make ends meet without increasing my work hours (having us both sat at home so much costs a bloody fortune in heating, going anywhere costs a bloody fortune in fuel!), and my longer term plan is to do a degree that will get me into an actual career that pays well. I imagine DS will need my support well into adulthood and I have to try and make a financially secure future for us both. But with him at home for all but what, 12 hours a week? That's just not possible.

I know it doesn’t come close to making up for not being able to work, but are you claiming everything you are entitled to? DLA, Carer’s allowance, UC. Also any grants you are eligible for?

Are you getting mileage for taking DS to school?

@Imitatingdory

I know it doesn’t come close to making up for not being able to work, but are you claiming everything you are entitled to? DLA, Carer’s allowance, UC. Also any grants you are eligible for?

Are you getting mileage for taking DS to school?

He gets DLA (middle rate care and low rate mobility, which I think is the correct level for his needs). I don't bother claiming Carers because I'm self employed and it works out better financially to keep my WTC plus whatever I can earn. He gets taken to school by the 1-1 who works with him while hes there - I successfully put my foot down last year and said I wasn't prepared to continue doing 40 minute journey and sitting in the car outside for 90 minutes because it wasn't worth driving all the way back home only to set off again!

So this is the list of what I want for DS that I've just started...

*X's education to be extended to 9-3.30 every weekday with immediate effect
*Increased time in school, built up slowly at a pace he can manage
*Weekly swimming or other physical activity (rock climbing, surfing, kayaking for example)
*Weekly board/tabletop gaming session (with 1-1 support and preferably with peer group)
*Weekly cooking session
*Weekly library trip
*Weekly session around life skills to foster independence - ie using public transport, shopping/using money, working on social communication skills

Anything else I should be asking for? Will I need to get new reports to back up what I want, or are these all reasonable things to expect from a full time education?!

The provision for a full time education under s.19, the Education Act 1996 will not get you the type of package you want, but it should get you more than you currently have. So, as well as pushing for more provision in the meantime you need to ask for an early review of the EHCP. You will need new reports unless the ones you have are very good and written to support a bespoke programme, which is unlikely from your posts.

All your suggestions are reasonable. One thing I would say is there’s no sensory OT, SALT or MH therapies in there, and you need someone to take DS to the sessions/out. You should also ask for some equipment and assistive technology for DS e.g. a laptop or iPad, printer (and ink!), software. As DS enjoys Latin maybe a Duolingo or Tassomai subscription. You need a budget for cooking ingredients and trips out etc. I would decide what physical activity you want and don’t mention any others. If you want swimming, you want swimming lessons not just swimming.

Have you looked to see what your LA’s offer is for independent travel training, often aimed at preparing students for post 16 but some LAs offer it to younger secondary pupils?

To give you a comparison DS1 has a comprehensive EOTAS package and his includes:

12 hrs 1:1 tuition - 3 English, 2 maths, 3 science, 1 each of History, geography, RE, computer science.
1 hour each of SALT, ELSA, play therapy, Lego therapy, rebound therapy, SIOT, climbing or kayaking (DS isn’t accessing either at the moment due to his MH), and swimming (a mix of hydrotherapy, swimming and aqua therapy).
2 hours of OT focusing on independence, life skills, social skills.
3 hours of physio - 1 hour with a physio and 2 hours with a personal trainer, one of which is at the gym (or that is what it is supposed to be, but DS is struggling with going to the gym at the moment due to a stressful visit and has been refusing to engage with a second session at home instead although did originally so he’s only accessing 2 hours at the moment, not 3).
12 hours of HLTA to cover 2:1 out of the house and travel time.

Equipment e.g. laptop/printer, assistive technology, sensory equipment, exercise equipment
Memberships/subscriptions - gym, MEL science kits, magazines, tassomai, national trust, touch typing programme.
Sundries budget for e.g. stationary, books, trips out.
Transport
Professional time for planning/reports/meetings/reviews/travel/leading and overseeing the package.
CP supervision if any of the professionals require it.

Then social care respite of 14hrs per week which is actually 7 hours as 2:1, and 10 overnights per year.