The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

Thank you all. DD3's new friend already drives to school. They're not allowed to drive on site, but there's a small residential area at the bottom of a road next to the site that the school is on, so I think she might meet the friend, park up together, then walk up the road to school.

@Beachgosling good luck to DD1. More life experience and more time to mature will stand her in good stead.

@Lougle have another scoop of icecream and stop being ridiculous, of course your girls need the support they get. It’s to even the playing field so they can fly, not to help them humbly limp along feeling miserable. Today shows it’s working. It’s what was needed and it’s getting better for you all. Be proud of yourselves. You put in the time and you are reaping the rewards. Do you ever let yourself think you are good at this and you are going to win? Honk honk.

Thank you all. I really appreciate the support. I know we honk, but a few months ago DD3 was driving down our road and a mother duck was walking with her little ducklings. She froze and put out her wings and they all huddled under. That's what the pub sometimes feels like.

DD2 is a little low. It's not easy to see DD3 pass her test when she's not confident yet. But I've reminded her that we're in it for the long game - confident adulthood, not 'get it done as soon as possible then never drive again'.

@Wellzizizbetter I'll be honest, the ice cream was a bit of a sacrifice - I'm not a fan. But chuck me some olives and feta and I'll indulge!

The psychologist and LD nurse met with the manager of the assessment unit yesterday to discuss DD1. They think it would be helpful to give her a short term placement there to see what support level she needs, but there isn't a space yet. They've done the initial assessment between them so that DD1 doesn't have to be involved.

I've printed the LPA forms and I'll take them with me to the psychologist tomorrow.

The LD service lead has confirmed they're proceeding with a change of consultant and current consultant has agreed to the change but it might take a while to find someone and in the mean time current consultant will need to act. They've assessed that DD1 doesn't have capacity to make the decision so it's going on best interests. I've filled in the form that formally requests the change. I've kept my reasons short and bland and said 'as referred to in other correspondence...'.

The plastering in the utility is done and most of the electrics are reinstated. The council is changing their contractors this week so there might be a bit of a delay in finishing off.

I'm exhausted so for the first time in months I'm going to try to go to bed early.

I'm not a fan

How can you utter such words!

Is there a long waiting list for an assessment place? How long do they think it will take to find another psychiatrist?

Some of the staff who are part of DS1’s EOTAS package are employed by us rather than self employed. Their notice period is 4 weeks. We have to decide by Monday whether to give them provisional notice. If we do, we risk losing them all. They all know the score. They all know that even if the judgement falls in our favour, there won’t be funding for the beginning of September. But if we don’t, it would be a significant amount of money for us to fund. One month would wipe out all our savings that have taken a huge battering over the last year. There’s no guarantee we will have a finalised amended EHCP by the end of September. I keep switching between the two options. I don’t think there is a right answer.

@Lougle congratulations to DD3!!! Wonderful news. 🌟

@inthequietofdawn is there a middle ground for risk? So you give notice in 2 weeks?

That's great about the friend for DD3 @Lougle She is doing so well.

That's difficult @inthequietofdawn if it would wipe out savings in a month. If you succeed would it backdate? If you think you are likely to win it maybe worth discussing with them to see if they could go part-time temporarily or take unpaid leave if those would help. If you think you aren't likely to win I would probably give notice now if its savings wiped in a month. Though very difficult if they are working well for your DS and awful they are putting you in this situation.

We had a nice day out took DHs classic car out to a local vineyard and had a tour, it was fascinating and they mentioned an agricultural college down south, plumpton where they said everyone goes. We had sparkling wine tasting ( don't drink normally but they were nice and had a plate each of local seafood with fresh homemade bread and butter from the village then we had some local ice cream. I love ice cream and DS has inherited my love of ice cream and taken it to another level. Then we went on to a plant nursery and bought some plants. Beautiful weather, around 25C and sunny. I of course started daydreaming about how we could start our own farm / vineyard now DH is retired and DS could work on it. Then I came home to the reality of cleaning DSs bathroom rubbish with lots of banana skins and seeing DS in a cupboard with ipad so maybe not. DS is very opposed to alcohol so no to a vineyard. I'm not convinced there's much money in it either, it was apparently 8 to 10 years before they had first bottle of wine. Though now 20,000 a year at £30-£40 a bottle but 26,000 vines to cut.

@inthequietofdawn you could ask them to take unpaid leave if they possibly can. You could reduce everyone’s hours or give some notice with a view to lasting longer on savings. You could give them all notice and simultaneously start recruitment for October start. You could take out a loan to bridge the gap and pay back over the rest of the year to spread the load. What a ghastly situation.

inthequietofdawn what a difficult (and unnecessary) situation to be in.
If you win at tribunal can any payments you make be backdated?

I am sure you have thought of all possible and impossible options so just sending my hope that you can find a semi-workable solution.

lougle I love the mother duck and ducklings.

Thanks all.

Funding won’t be backdated. If the judgement goes in our favour, funding would only be possible from the date of the finalised amended EHCP post Tribunal. We should have the finalised EHCP within 5 weeks of the Order. The Order that we don’t actually have yet. The finalised EHCP won’t be issued before the beginning of September and may not be by the end of September. The LA may try to ignore the timescale for finalising and need to be forced, which would delay things. And, of course, there is the chance we won’t be successful.

We should be successful in securing EOTAS/EOTIS. Although nothing is 100% guaranteed. Some of the disputed content is less certain. We should get most of it. There’s a few bits that are less cut and dried.

We could wait two weeks to give notice. Although that might just be kicking the can down the road. We might not have the judgement in two weeks and it still won’t change not having funding for the beginning of September and possibly not even the end of September.

We can’t give them all notice and recruit again for October now. We don’t know precisely what we would be recruiting for. That depends on the judgement. Even if it is in our favour, there is no guarantee funding will start again by October.

Reducing hours is a possibility. Although there is a risk they would leave anyway or would take on another role so wouldn’t be available if we are then in a position to increase hours when we get the new EHCP.

A loan is a possibility on the table. It is DH’s preferred option. Repayments would need to be over longer than a year. I hate the thought of debt when we don’t know what the future holds.

We don’t even have the safety blanket of s19 provision because it doesn’t apply.

@inthequietofdawn In our profession, prudence was a fundamental concept for decades. In other words, always look on the black side.

Anyway, if someone asked me to bet if my LA was going to issue a final amended EHCP, with the provisions I wanted, by the end of September, I wouldn’t bet on it.I certainly wouldn’t risk all my savings on it. (Been there, done that over a tribunal, wouldn’t do it again!) You have other DC to think about and what would happen if your boiler broke down, or one of you was off work sick for 6 months with no savings? Idk your DH’s work circumstances, but the rule of thumb for self employed people is to have 6 months pay in savings, in case of illness?

Is the EOTAS package all funded by the SEN division? Could you put in a request for a (re)assessment of social care needs, and seek JR, because the chances are, whatever SS produces, will be rubbish; and then try to employ the same people funded by SS, as carers for DS, while you wait for the tribunal?

@LathkillDale DS1 currently has a very large EOTAS package. The package will finish 31st August (with the minuscule surplus returned to the LA as per the DPA). The LA finalised an amended EHCP with a September start at a PMLD/SLD/PD school. We appealed. We have had the hearing. Now waiting for the judgement which is taking a while at the moment. Some are waiting longer than 20 working days. Currently, the EOTAS package is funded 3 ways after ‘discussions’ at the tripartite panel, but it all comes through an education PB (don’t ask) since it is ultimately the LA’s responsibility and being funded 3 ways doesn’t alter the fact that it will all stop.

DS1 will not be registered at the school and won't attend. Not even in the interim. It would be disastrous for him, the school’s pupils and the school’s staff.

DS1 receives children’s continuing care funding and already has a large care package, respite and activities budget. A change following a review would take even longer than the EHCP. It probably wouldn’t increase anyway (see already having a large package) and JR probably wouldn’t be the answer in this case. While DS1’s carers receive higher wages that your run of the mill carers, it is less than what many of the professionals who are part of his EOTAS package receive.

DH isn’t self employed and his job is secure with good sick pay, but it is not knowing what the future holds that leaves me anxious about spending our savings &/or getting a loan. My earnings are peanuts in comparison. It wouldn’t change things if I didn’t bring anything in.

We spent a very considerable amount of our savings to facilitate ds going to SS. I can’t see there was much choice at the time but it has changed our path. If you can keep the savings do.

PS - I forgot - is the social care element funded by NHS CHC funding?

Sorry, we had a long drive today, after going to a hospital appointment with DD1. I didn’t read your post, until after making my second post, when we got home.

It just seems so bitterly unfair @inthequietofdawn . How can they think that's in the best interests of the child? I think you have to opt for overall stability. One month isn't going to change much in the long term, and if that month wiped out your savings, that leaves you in a very precarious position.If staff are willing to flex, etc., that's amazing, but if they can't, I think I'd give notice and hope they are still available if it goes your way.

I can't imagine the stress of waiting for DS1's outcome. What madness.

The ice-cream thing is sad but true. I quite like pistachio, but I'd rather have a bowl of them than the ice-cream.

The assessment place waiting time is unknown. It's a LA facility, so short term placements and the manager anticipates that some clients would move on soon, but at that point she would need a proper assessment of her support needs, risks, etc. So it could be days, weeks, or months.

The psychiatrist may take until after the summer to sort. I've had a short letter today from the current psychiatrist, asking if I'm still happy for DD1 to be reviewed by her for her ADHD in the meantime. I've said I am, although DD1 spontaneously voiced her distrust to the psychologist today.

The psychologist has confirmed that DD1 is happy with the LPA and has signed her sections.

DD1 has been in a lot of pain this evening. I wish there was something that helps. But in good news, the charitable trust that funded a hydrotherapy pool in a town local to us also contributes to the cost of hydrotherapy if people need it. The person who set up the Trust was disabled herself, so her whole ethos was lifelong care. They've agreed to fund DD1 at 75% cost (it's the highest they offer) for the rest of her life as long as she will benefit from hydrotherapy, unless her finances significantly change. I'm still a bit confused by the social care stuff because as far as I'm aware, she'll be left with £30 per week, so even 25% of the cost of a hydrotherapy session will be a significant chunk of her money.

Letter through from LEA. DS will get 2 hours SALT per week to make up for what he hasn't got. School said they stopped because he "wouldn't engage" in other words they can't be bothered to even employ a SALT.
DH has gone to pick up DD from her PGL holiday and we haven't told her yet about my mum, he's going to tell her and then we're all going to speak on the phone.
DS had 7 mini tonic clonic today though we did go to A&E and the paediatrician said he thinks they aren't actually tonic clonic because they were only 5 seconds long and DS was aware of what was happening but couldn't control his muscles. He said to cut down screen time. We're going to give it a go!
DS likes his audio stories and went to bed early today, he also likes doing word searches and Where's Wally so we'll find something for him to do.

Poor boy @drspouse 7 is a lot. Is he constipated? Does he have a temp? Is he sleeping? Is he drinking enough?

@drspouse ive forgotten if you have pets but Yappy do a where’s my cat/dog similar to Wally. Also marble runs have always been a big favourite screen alternative. Hope DD is ok.

@inthequietofdawn your first instinct of giving notice on Monday is probably the one isn’t it. Massive stress on you to cope with potentially no provision. Hanging on to your savings seems sensible.

@Lougle it’s been an LPA day here too.

Im in overdrive getting all the things done while DH is on leave. It’s so much easier with both of us at home. @Tulipandmagnolia i can see why you are enjoying DH’s retirement.

@drspouse I sorry you ended up in A&E. I hope DD enjoyed the PGL camp. Good news on the SALT.

@Lougle a financial assessment would look at disability related expense. Hydrotherapy could be a DRE. So the £31.80 personal expenses allowance for those in social care funded care home/the £95.40 minimum income allowance for a single person under 25 could come after taking into account funding hydrotherapy. I know I have asked before but you revisited CHC funding since DD1’s deterioration?

DH and I have decided the sensible option is to give notice. With a heavy heart, that is what we are going to do on Monday.

I'm sorry @inthequietofdawn . It's the only option, I think, but it shouldn't be. It's wrong.

I think she wouldn't get it now, but it's possible that if she behaves as we predict once the honeymoon period is over, it will be worth visiting.

I hope at least some of the employed personnel will hang around.

All the self-employed people involved are willing to hold the time for us and say they will be able to fill their time in the gap with ad hoc work.

inthequietofdawn I am sorry too that you have to do this. It is the side of SEN provision that those ranting about the costs have no clue about.

drspouse good luck with cutting down screen time and I hope it helps.

sounds a hard but considered approach @inthequietofdawn . It’s a ridiculous path we all tread but keep going. Honk honk