The Goose & Carrot Pub

[RedRegular]

A thread for all who have DC with SN. The thread is deleted in 90 days and doesn’t show in active. The season is changing and the bar is well stocked.

The LA can only cease to maintain if they are no longer responsible (in the legal sense) for the CYP or it is no longer necessary (again, in the legal sense) to maintain the EHCP. This is set out in the Regs. Neither apply to DS. As a starting point for a simple explanation see this and this IPSEA page. You might find IPSEA’s pages more straightforward to read than SNJ.

If the LA try to cease to maintain after the review, appeal. The EHCP must be maintain and the provision within it provided until the conclusion of any appeal.

You will need evidence, but if you are looking at EOTIC, as a starting point think about:

• Tuition - previously you said DS works well with 1:1 tuition, so I would look at that. It doesn’t have to be sit down formal tuition. It doesn’t have to be focused on academics. It could be trips out. This doesn’t have to be aimed at qualifications, but it could be. (I think you said previously you thought DS could do more?)
• Some kind of staffing for PfA, accessing the community, etc. provision. This could be a tutor, mentor, HLTA/TA/LSA. In theory, it could also be a PA via education rather than social care. Although I tend to avoid using the term PA for section F because sometimes it leads to LAs saying that is social care provision. It can be included in F but it is easier to avoid the issue if possible. And a budget to go with it.
• DS clearly needs SALT and OT.
• The activities you do like swimming, rebound therapy, gym membership and parkour can be included in sF.
• You said DS enjoyed pottery. That can be funded. Be that proper sessions/lessons or also you can get some brilliant subscriptions.
• You said DS likes Lego, a Lego subscription or budget for sets could be included. Would DS be able to go to a Lego group with support?
• You could look if any APs or groups/centres would work for DS.
• Don’t forget things like tech, subscriptions, memberships, equipment, professional time (e.g. for leading a package, EP input, MDT meetings, liaising with other professionals).

What else does DS enjoy doing?

Ds loves swimming, I mean really loves it. He loves people, particularly people who know him to say hello to and meet/greet/have the same joke with, he loves arcades and trains buses cable cars though we don’t give him as much of that as we could. He likes getting money out of the cash machine and putting money into a change counter, he loves slides/rollercoasters/rides but we have avoided them for sometime as they can be seizure triggers (though so far not for him), most of all he loves a family road trip to a villas or family holiday but it is hard to find the ££££s needed for that as only one child is through education so far. It’s the single biggest boost to development though. We come back with a different profile. What I find frustrating is that he really is so much more able than he was and yet seems really to make most progress outside of college. Besides which he needs (and wants) a life beyond home

Things like swimming, arcades, trains, buses and cable cars can all be part of an EOTIC package. DS3 went on a steam train last week. DS1&3 both go swimming.

I know a young man who is ticking off train stations across the country. He and his tutor choose a station, look at it on a map, plan the route, buy tickets, travel, take a photograph of the station sign, send it via WhatsApp to family with a short message, go for lunch/cake/drink/whatever, then travel home. They print a photograph of the station sign, stick it in a scrapbook (sometimes with a couple of words underneath) and finish by ticking the station off. It covers numeracy, literacy, IT, geography, PfA and so much more. For stations further away, they have combined the education hours and the social care PA hours/activity budget to stay overnight.

I appreciate why you are avoiding them, but just so you know, theme parks can be funded too.

Thanks @BlueandWhitePorcelain We do need something stronger and have looked at things aimed at animals 😂. Currently in talks with one company who are very good and getting their designs.

What we originally wanted was a mini version of our cottage as DS loves little houses. But DH wasn't sure about thatch which I love but DS does sometimes climb and sit on roof of current shed with a big outdoor cushion as well as climb trees and sit up them. Our current shed isn't that high and is quite strong but we need to make sure replacement is strong. The one shed company had said you can't go on roof which is normal but DS doesn't always listen and no way of knowing pre shed if he will or not plus that shed I wasn't sure was strong enough and also turned out wood was untreated pre painting so have ruled out. Company I am talking to are designing something he could sit on part or all of. They've come up with 2 solutions so far, a part flat roof, part cedar shingles with a ladder at the side to the roof. Or a completely flat roof again ladder at side of shed and a wildflower or sedum garden on top of the roof. These are super strong especially for wildflowers. DS loves flowers though I am not sure of practicalities but researching it. The designs they've shown me there's a lot of windows in from floor to ceiling which DS would hate so I have asked for one more like a little house with little windows and none on lower half of shed as he likes privacy. I am hoping they can do that, would have thought so. I can see why some people would love the other design, to go in garden in rain and feel part of it but DS uses it more like a place of peace to escape the world. We have to get planning and listed buildings consent but think that will be OK and they can help with that. These sheds I think are lower than the other designs they showed me which were 3 metres high. I think lower is probably better and above 2 metres you can't really reach anyway though DS might like 3 metres with a mezzanine level but I'm not sure if he would still go on roof and don't want to risk that. This one will be more like 2 metres I would guess and DS is tall, close to 6 foot.

If there is a shed there already do you need permission to change it for the same footprint?

Yes the shed is there but we need permission for anything at all and permission to take down current one as house is listed. I am not convinced current one has permission but has been there a long time.

Just thought I bet if we get the part flat part shingle roof DS will go up the ladder then try to slide off to get down. 🙄So that might mean its a no depending on how high it is.

Are you sure you need full planning permission? There are several “levels”, you could just say you are replacing it with something more sturdy, and go for a certificate of lawfulness if needed? Particularly as it sounds quite small. Remember anything you do put up can be rendered or have a facade to make it disappear a bit iykwim. If the listing extends to the garden then I’d ask a planning expert to help you. They can prepare your submission and babysit you through the whole process.

Its full planning permission and listed building consent needed as house is listed so its any change. The firm can help us do planning. We have done lbc many times before. We have done planning once.

@scoopofmintchocchipicecream - Eotas didn’t occur to me then. DD1 had spent most of her education in speech and language provision. I only came across CYP, whose needs were met in specialist speech and language schools. Then, at college, she was with students, who needed onsite medical care like her.

NHS in the community is too fragmented for people like her. She needs onsite medical care, which she gets where she is now, plus they have SALTs, OT and physio. Anyway, they expect her to use independence skills on the house; she has the opportunity to do about half a dozen types of work experience onsiteIt; they have a swimming pool, gym, bowling green, basket ball or football pitches, a sports hall, cafe, shop, library and social centre (where they can do art, play games, etc). It could be Eotas in all but name, if she wanted, but it’s funded by NHS CHC funding. It cost pretty much the same as her residential FE college.

The EP phoned today. Originally she was asked to do a short assessment report (Record of involvement?) for DD1, but the LA have now said they need a full report equivalent to the K5. She's going to send me the draft for comment on Thursday.

In the meantime, the dogs managed to get into the pantry and have a feast on their food. DD2's dog simply puked and carried on, but DD3's dog is a sensitive soul and has had to have emergency surgery this afternoon. I phoned the vet practice and said what had happened. The vet said that in most dogs they'd watch and wait, giving some meds. Because it's DD3's dog (she has form) it was straight to x-rays under GA, then surgery. We picked her up and took her to the night hospital this evening.

@Lougle - I am sorry to hear about the dog. I hope the surgery went well? Hopefully, it won’t cost an arm and a leg? It’s devastating for DC to have bad news about their pet.

I think it's about £3000 including tonight's overnight stay, but we have good insurance so it will only cost us £100. She's young, which is good, but she's already had two similar surgeries, and she'll need to be spayed in a few months, so it's not ideal.

How awful for you all @Lougle. Why are there always disasters? It’s just exhausting.

I’ve decided I will write down my dream week for ds and them price it up (including the direct payment hours). If it comes to less than I give his twin for uni we will go our own way. If it’s more I will ask for it to be done through the ehc. Does that sound sensible?

@Lougle Oh no! I’m glad the insurance will cover most of the cost.

@Zeonlywayisup if you are doing that, remember to add in all the wider costs e.g, the price of equipment, resources, memberships, entrance costs, travel costs and the things that won’t be weekly but would still really help DS. I would say there is no way it will come in less than or equal to what you are spending on university for DT. If it does, I think you need to relook at what you have included.

I took my eye off the ball, really. I got busy with something, DD1 went into the pantry and left the door open. My fault.

I don't like your plan (with my most supportive, true friendship intention). Your DS at uni is getting the education he wants and needs. The mechanism for that is student loans and you are giving him what you can afford on top. Your DS at home deserves the education he wants and needs. The mechanism for that is an EHCP. If you then want to give him what you can afford on top, that's great. If you take him out of the EHCP system at this stage, your only real option will be social care, which will be much more limiting than EHCP provision. With the reforms coming in, even a bad EHCP that you tick over is better than no EHCP.

I think the costs are less than they would be for the LA, but it looks tight (I haven’t done the maths as I’ve barely slept this week so would cock it up). We homeschooled for a long time and it was at least as expensive as public school. I will feel more comfortable whichever way I jump if I have some clarity on why and what we need. He hasn’t been in college since last Tuesday and is a much happier young man. That may be he’s had a big seizure and that brings some relief, or the meds increase but it could also be he hasn’t been stressed in college. I want time to enjoy my life and my son. The last few years I feel like our life is all supporting time in college.

@Zeonlywayisup personally, if the cost comparison is looking tight, I don’t think you are including everything DS needs.

Maybe a bit of reassurance to you and @Lougle, it is proposed transition to the new system will start from September 2030, but as the current proposed timetable stands, young people our DC’s ages aren’t be included. Presumably if that proposal is what is passed (who knows if that will be the case), they will wait for YP to age out, numbers of EHCPs naturally dwindle as YP get older and probably try to cease to maintain more.

@Zeonlywayisup I think you and I have been conditioned to think that we are getting more than our fair share simply by having an unsuitable, generic, time-filling, box ticking, offer of 'education'. I'm not saying it's those things for every young person on the course - I could see that lots of the young people were thriving in that environment. But our two need more. They need their chance to thrive. They need an education that builds them and gives hope, not one that squashes them and emphasises all their struggles.

When I sat in that meeting two weeks ago and the EP said "Lougle, you know DD1 best, is there something that you think would work?" and I said that I thought resi with a waking day curriculum (I know that's not the term now) was what she needed, I thought I was asking for the moon on a stick. But everyone nodded, and now all the professionals are collaborating with each other and the LA to make sure that their reports support that.

What I'm saying is, don't let the last 3 years shape your view of how the next 3 years should be. DS deserves provision that meets his needs and allows him to make progress towards his outcomes.

@Zeonlywayisup I’m so lucky to love a few people but it brings the complexity of wanting to give them all the time and attention they deserve at different stages of their lives. This ‘cost’ of what’s going on in the whole plays a big part in my decisions for DD. Bumping along the bottom of bad provision is really hard. If the decision was between great EOTIC (erotic 😆) and EHE it’s an easy one. If you knew a 6 month battle would end in great provision it would be a no brainer. Very difficult to make big decisions when worn out. I think you would create a really good life for DS self funded and driven by you but is the timing right? EHCPs disappear at 25 and it’s SC funded after that, would your own funds be better spent after 25?

We are buckled in for the last 4 weeks of OU. Deciding which historic figure to write about is more problematic than I would have guessed. Really tricky to find someone that aligns with DDs values as she is NOT giving air time to racists/criminals/communists/dictators etc historically it rules out a lot of people.

@Lougle glad all your people are working together to align reports.

@RedRegular I admire DD's principles. Do you have criteria for the sort of historic figure she has to write about? We might be able to give ideas for her to consider.

No criteria. Mozart’s sister (the prodigy who taught Mozart but never got the spotlight as she was female and had to stay home) is the closest we have got but not quite right. Suggestions very welcome!

@RedRegular Mary Seacole, Vera Atkins or Noor Inayat Khan?

@RedRegular If she is interested in people who opposed communism Ronald Reagan and there's a Netflix film at the moment. Or Lech Walesa from the solidarity movement then president of Poland and nobel prize winner, started in a shipyard. Might be more our generation than hers though. Or David Attenborough as she loves wildlife.

Still on sheds here. Asked DD and she voted to keep current shed as DS loves it so much. So I asked a repair company as don't think it will last that much longer though we can try and they said beyond economic repair but gave me details of a local company that makes and installs sheds. They have some off the ground chalets which look interesting but not sure of heights as we have neighbours not that close but higher up than 2 metres for windows you can see unless facing us only. We are wandering if the grass roof option would lead to lots of mud and don't like flat roofs but the only design DS could go on.