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[ExistingonCoffee]

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

Thank you @ExistingonCoffee it’s really helpful having a calm voice saying how things are supposed to work.

It's worth saying it. In fact, you might even want to get a bit bullish and say that you believe these things are needed for the review, so it might need to be pushed back in order for them to get the advice in time. Similarly, if they go ahead with the review without it, lodge mediation and then contact them to say 'I'm going to be appealing the EHCP because it isn't fit for purpose. Would you like to discuss it before formal proceedings begin?' Then tell them what you think is necessary to make the EHCP relevant.

When I said that, it triggered a new Ed Psych assessment, new SALT assessment, and a new OT assessment. It also got those professionals talking to the psychologist.

I have no idea, @ZairWazAnOldLady . I always thought she would live here forever. But the psychologist feels that she isn't coping with family life (and she's right) and that DD1 would be happier if she had her own space set up for her, then we could collect her for visits and tea, visits to Nanny and Grandad, days out, etc., but she'd have her own place to go back to.

In our house she has a tiny bedroom (just big enough for bed, TV on the wall, and a storage unit). We have no dining room because it's DD2's bedroom, and she doesn't like spending time in the lounge. So she spends probably 22 hours per day in her room, with the rest asking for food. There isn't room for a carer to sit in her bedroom and do an activity with her.

She's happy to go out with the carers, so far (although I suspect novelty may be at play), but the motivating factor is getting a drink or lunch, which can't be the thing because she's almost obese now, which isn't good for her pain. Once she's finished her drink/food, that's it. She's done. One of the carers took her to Costa, ordered a frappe for her and a coffee for her carer. She said that DD1 had finished her drink before the carer's was ready, then got stressed and wanted to go home. Yep, rookie error. Never give DD1 her drink before you have yours.

She doesn't have the concentration span to do any sustained activity that she chooses, and she won't do things that we encourage her to do. She's always been very self-directed.

That, along with fatigue, back and hip pain, etc., makes everything tricky.

Sorry, rambling again. It all just feels impossible. I should be meal planning, arranging low calorie 'sensory snacks', doing physio exercises...I have the Swedish ball, but where do you put it once it's inflated?

Anyway, on a positive note, we met the person who coordinated the charity donations to secure DD1's wheelchair assist for some photos yesterday and they were absolutely delighted to see DD1 independently wheeling across the field to them.

DD2 is struggling because it's back to school. DD3 is also stressed, but looking forward to it.

I’m laughing at storing the inflated ball. Dh took one to the tip with glee at the weekend.

@Lougle if you would like DD1 to remain at home but space is the barrier to her needs being met there, would it be worth revisiting a DFG? You can sell it as being the cheaper, much cheaper, option for the council.

@ZairWazAnOldLady a full comprehensive assessment is unlikely before the review meeting, but it is part of the long game. To get a good EHCP, it is likely you will have to appeal, and you can seek further evidence as part of that process. Either via independent reports (funded yourself, via charity, or, if eligible, legal aid. In your situation, I would look at EP, SALT, OT and ISW in that order if you can’t afford/secure funding for them all) or by asking the LA to seek advice and information (and if they won’t, asking SENDIST to direct them to, which isn’t guaranteed and may not be watertight but can help).

Personally I wouldn’t, but so you have all the options, you can formally request a reassessment of needs and appeal if the LA refused.

@Lougle if you would like DD1 to remain at home but space is the barrier to her needs being met there, would it be worth revisiting a DFG? You can sell it as being the cheaper, much cheaper, option for the council.

I'm not sure how that would work. Currently DD2 and her assistance dog are in the dining room. DD3 and her dog (in training) are in the 2nd bedroom. We are in the main bedroom. DD1 is in the third bedroom.

I'm not sure what could be done in terms of making it better for DD1. She couldn't use a loft room because she would find it difficult to get up and down the stairs. An extension on the back would far exceed the £30k limit. I know they can go higher, but they prefer rehoming. Moving would make my care of my parents more difficult.

Also, if they did do a DFG and then it was decided that she needed to have supported living anyway, I'm not sure where that would leave us.

The psychologist thinks that family life is hard for DD1 and that she would be better with her own home.

@Lougle would a loft conversion work for DD2 and her dog? They wouldn’t usually fund adaptations for others as part of the DFG, but DD2 could be eligible for a DFG herself. The current solution to the bedroom problem of using the dining room as a bedroom without you having a dining space elsewhere goes against the DFG guidance so you could go down that route.

If you move within 10 years, you can be asked to repay some of the grant. However, usually, when the move is because of someone’s disability, that doesn’t happen and can be challenged if the LA tries to collect.

Don’t forget you could go for a DFG to help all DDs and pool the amounts.

Obviously if you think living at home even with adaptations wouldn’t be enough then ignore.

@ExistingonCoffee they’re asking me for dates that would suit me for the review. As we can’t get reports before do we just go ahead with the old ones (ie I just say a date and the process goes forward) or do I need to say what about delaying and asking them to get reports now? I think the EP and SALT are pretty key to any planning but I’m not sure much is on offer anyway. Why would a reassessment of needs be needed? Is that because all the reports would then be done as part of the process? Why wouldn’t we do that (curious)? They are scheduling all in the community road awareness for times ds isn’t there, which is upsetting, especially as we’ve been working so hard on road safety that it would have been genuinely helpful. The bottom line is he’s got so little out of this year simply because he hasn’t had the 1:1 he needs. We’re still making progress but it should be so much better.

For those of you that have enablers, how many hours are “normal” a week? I only ask because we originally discussed 12 but I said we’d never use them and so we settled on 9. (We use about 1.5 hrs as it’s too much at the moment on top of college etc). If we DO lose college we won’t need more for a year or more but he may manage much more without college upsetting every week in which case would 12 be too much?

@ZairWazAnOldLady an enabler would be no different for DD than a haircut or tutor. It works better if there is a day’s rest in between any activity. Would it be worth going for 12 hours and having 3x 4 hour sessions a week. If you go for 12 and only use 5 does it matter or do you still need to pay them? Better to have 12 in case college goes than have 9 and try to increase?

@Lougle own space with carers and home visits is the kind of model I can see working for my DD as I get older. Ideally a flat within walking distance. Converting your shed to an extra space sounds like a good interim step. The ultimate set up would be separate accommodation in the garden with kitchen and two bedrooms. We would have to move a long way to achieve that. I’ve got my DM to think about.

@HedgehogsAgree would DD cope with the sensory experience of a flat?

@ZairWazAnOldLady a reassessment of needs would see all the same information and advice sought as is gathered during EHCNAs. Some people go down this route when the EHCP evidence is very out of date and they want to return to the NA stage. However, personally, I wouldn’t do this because a) you are likely to have to appeal the end result anyway so you might as well get in the queue for appeal after the early AR rather than wait for a reassessment of needs to conclude, b) it doesn’t guarantee good evidence (LA reports are often vague and woolly), and c) there is a chance the LA would then propose to cease to maintain (which you would be able to challenge but is still something you need to be aware of).

Instead, I would go ahead with the early AR ASAP, then appeal and seek evidence whilst doing that. I wouldn’t postpone the early AR until you have all the evidence lined up. That could take a long time. Updated advice and information must be circulated at least 2 weeks before the review meeting. I would insist that happens, but this won’t be a full comprehensive updated assessment.

12 hours wouldn’t be too much to work towards. There isn’t a normal number of hours a week. It depends on the individual’s needs/circumstances.

My DSs all have carers/PAs. DS1 has carers for 42hrs/week during term time (actually 21 hours as 2:1) and 50hrs/week for 13 weeks per year (actually 25 hours at 2:1). Along with 2 overnights a week inside the home (except the weeks he has overnight respite outside of the home when it is just one night at home) and 12 overnights a year outside the home. DS2 has a PA for 4hrs pw term time/6hrs pw outside of term time. DS3 has 6hrs pw term time/12hrs pw outside of term time. I’m aware we get more than most.

I guess DD1's carers would count as enablers. She now has 15 hours per week, but I've been told that it can increase if it goes well.

DD1 used to get 54 care hours a week - which is what I asked for, because DH didn’t want strangers in the house at night for privacy.

The independent enquiry into Clive Treacy’s death and DD1’s medical needs, which just can’t be met by the NHS in the community, put us off supported living for DD1. However, even putting her medical needs aside, a BBC report would have put us off as well - that when the care provider can’t get staff to cover a shift, they ask the parents to do it themselves day or night. One person featured in the report had been through about six care providers and the seventh had quit during filming. The eighth quit before even starting, and the seventh agreed to carry on for the time being. Someone from SENSE commented the whole care industry was on a cliff edge - and this was a few years ago!

@ZairWazAnOldLady - doesn’t DC have an epilepsy nurse? When DD1 wasn’t living in a specialist centre, I could email the epilepsy nurse at any time, if a drug change was making something worse, and they’d liaise with her consultant neurologist.

Is he under a tertiary centre? Cenobamate is the new big thing. I didn’t think it did much for DD1’s seizure control, but it improved her mood no end. Her consultant neurologist said it’s a game changer, and they won’t consider brain surgery, until the patient has tried cenobamate first. She was supposed to be going on the cannabis drug, but they decided to put her straight onto cenobamate.

For some, employing carers directly works far better than using agencies.

@ExistingonCoffee DD said if she has a flat it would need to be the top floor. I expect we will move at some point. I think a side extension set up with kitchen etc and 2 bedrooms would be the ultimate for DD, besides living with us for her whole life, she is very happy here but we won’t be here after she is 40ish and if we are we will be elderly when she is 50.

@BlueandWhitePorcelain yes we have good consultant lead care. Ds’s epilepsy is much less out of control than dd3s was. I think there’s a difference in care with or without other disabilities (Ld ASD etc) that I find quite hard when I let myself notice it. I do know that dd came out the other end mostly unscathed so I know that what we see doesn’t have to be how it will always be. I do wonder if it’s the weight of education uncertainty that holds me back with ds. He of course started with so much less so the damping down or additional behaviour has a much bigger impact. The struggle to actually get hold of the meds is a pharmacy level issue. I think perhaps we should try online but I worry that if they don’t deliver there’s no one physically to go and talk to.
I don’t think agency would suit me at all. As is probably apparent I am a complete control freak. I do find it hard to manage everything though. I need to do the court of protection stuff and we need tighter wills ourselves, our parents need more help and it all does seem a bit much.
@ExistingonCoffee that is a lot of hours but you know very well they wouldn’t give them if they weren’t needed. I wonder how many hours you and dh do on top?

@ZairWazAnOldLady if an online pharmacy concerns you because there isn’t a physical pharmacy to go to if there are problems, have you checked if you have an in-person pharmacy locally who also deliver?

We don’t use agencies either. Like you, I prefer having control. All carers/PAs are employed directly. We don’t use agencies for DS1&3’s EOTAS/EOTIS packages, either. Other than DS3’s AP which the LA commissions directly, everyone is directly employed or self employed. Although we do use a pay-roll company and DS1&3 have co-ordinator hours via their EOTAS/EOTIS packages.

@HedgehogsAgree as a student, I lived in a flat for a year. I found it a sensory nightmare and my sensory difficulties are not as pronounced as your DD has.

If you get a side extension with its own kitchen, investigate how your council will view it. A separate kitchen sometimes means a separate council tax bill.

@ExistingonCoffee thinking back to living in a flat there are a lot of movements that can be felt even if not heard. The side extension is not practical where we are now so it would have to be a move. I expect we will just carry on as we are.

I don’t think there is @ExistingonCoffee buti will check because that would help. We’re quite rural and the entire area has pharmacy problems not just us. I just have very little time and it’s an hour to queue plus driving there and parking and back, so the four trips so far (they could only give me 20/56 tablets this time) this month is adding up. I estimate it will hit 8 hours easily. Ridiculous!

@ZairWazAnOldLady such a waste of your time and energy. If you try an online pharmacy and there is an issue that can’t be resolved over the phone and you want to go somewhere in person, you can always ask the online pharmacy to return it to spine and go to a brick pharmacy locally who will then be able to find it on the spine.

DD1 tried to end her care after 1hr 45 minutes today, but we persevered and said that she could go up for a rest and come down a bit later. She decided to stay down with us.

@Lougle way to go! All the big future thinking us geese hold and it is the bringing it back down to choice and autonomy and daily wins that make a difference to actual family life.

@OneInEight i was thinking of you and DH. How is his recovery? Not even sure if this is your user name.

@Lougle that’s a win! I think it’s a big step forward actually. I really think you need a little space to think for you too. Could there come a time when you could ring fence an afternoon a week for yourself?

@HedgehogsAgree Thankyou for asking. dh is OK. He still gets a lot of pain when walking (likely still impaired blood flow from the unrepaired bit of his aortic dissection but will know more on next scan) and still is tired (even before this latest scare he had chronic fatigue). I think he is still improving but at snails' pace but better some improvement even if slow. On the plus ds1 passed his driving test yesterday so we are back to 2 driving members of the household again.

It's nice to hear from you @OneInEight a slow recovery is better than no recovery, but I hope his team can find a better plan to help him. Congratulations to your DS, I bet that's a big help.