The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

Helpful meeting with solicitor. Suggested we invite him to AR as a threat! Our SALT report is helpful but he says the EP has turned bizarre in the last few years and he'll recommend someone else. Urgh, more delays but we'll get there. Hopefully. He's also going to write a letter before action about the lack of speech therapy.

@drspouse that EP used to have a very good reputation, now the EP is one to avoid. I wouldn’t have recommended that EP. Although, from your posts, I’m not sure the EP would have been a good fit for you in the past either. There are a couple of other EPs who have also changed for the worse over recent years. A new EP report doesn’t have to delay anything. You can do that while in the appeal process.

Don’t you just love late Friday emails from the LA? I have received the latest version of the WD from the LA. Up to their old tricks again. They have edited the normal text, deleted some of the normal text, deleted some of my proposed amendments, edited some of my proposed amendments, and underlined some of their proposed amendments that I have not agreed. None of which they are supposed to do. They have also inserted some of their proposed amendments into the middle of my proposed amendments, splitting sentences and making it impossible to read/work from. I need to go back to the previous version and work from that, C&Ping across their new proposed amendments across.

Don’t you just love late Friday emails from the LA?
They are also legendary in the adoption world - usually to say they need more information at the assessment stage or that they have more information (but not giving the actual information) at the matching stage.

I once had a series of emails where I was in a different time zone as was going to be travelling home and therefore not in communication while we had heard that DD was on the way but were missing extremely vital pieces of information. I remember standing by an outhouse with an extremely beautiful tropical view talking to DH on the phone in bits!

I think social workers and SEND officers go to a special training school to do this.

I like to get my own back with late Friday emails of my own. Petty, I know.

There’s a report on the ITV News tonight about a LA SEN officer whistleblowing on the deliberate instructions they get - per SNJ!

Sounds like a must-watch!

Its also on the ITV website

I had an email from a day provision asking us to book in for a tour. I phoned and said that I was very happy to visit, although they were a little way away (1 hour) and DD1 has previously found 30 minutes a struggle. The lady said 'we did think it was quite a journey.' Then she suggested Tuesday, and we agreed a time. I then said 'Oh, just double checking....DD1 is a part time wheelchair user. I take it you're wheelchair accessible?' 'No, we aren't.' Well that's a bit of a problem....

Anyway, she was so very nice, has 3 DC with EHCPs, and as we talked about DD1 she said their provision was not suitable due to distance and wheelchair alone, but she's going to go through the EHCP and give a full list of reasons why they won't accept her.

One of the resis sounds good but when I phoned the receptionist said they are full for Sept 2026, so she would have to wait until 2027.

DD3's had a tough day and DD2 had a tough driving lesson.

I'm tired.

@LathkillDale the report doesn’t surprise me at all. It isn’t isolated to the one LA.

@Lougle I'm sorry DD2 had another tricky driving lesson and DD3 a difficult day.

If you haven't already, follow up the phone call with an email to create a paper trial as evidence.

2027 may not be an issue. Many have to appeal for a residential placement and the right residential. If you have to appeal, 2027 rather than 2026 won’t be an issue. In fact, you may have the opposite problem. Appeals registered now are coming back with HDs at the end of next year. If the placement won’t hold the place beyond the start of the 27/28 academic year, that may be an issue. You would be able to request an expedited hearing, but it isn’t guaranteed, and even if it is agreed, it may not bring it far enough forward.

Thanks @inthequietofdawn . Maybe I'm being naive, but the Caseworker said that she wanted the draft out to providers this week because they want a Sept 2026 start. What would we do with her for another year? She's not tolerating the carers well.

It's all a bit confusing. The one that I've been told is full is the one that you think will turn her down, but is the one that the lady I spoke to today thinks would be great. In truth, I think DD1 would need to start on the lower pathway to get used to the college before doing the higher one.

The one that you said could be great, which is closest to us, is expanding and their website says they're still accepting applications. I wonder if the fact that DD1 already has level 1 qualifications and they only offer entry 1-3 might be an issue for them, but at the same time, it's the ability to function that I'm aiming for.

@Lougle LAs say a lot of things. Some would look at other placements, but that largely depends on if there are suitable alternative options. Whether they have guaranteed a place in September 2027 would also influence the decision or if the placement will consider 27/28 placements nearer the time. Some would muddle through for the year. You could request EOTIC for the year.

I know DD1 is finding the carers difficult, but that is to be expected and it is still very early days in the grand scheme of things.

I think “What do you see her doing as an adult”?

Is a really important thing to be thinking about. So I'd embrace the year gift you have to. Surely education should be focused on the skills she needs to build a happy fulfilling life? Exploring that before embarking on a course to me seems a very good use of your time.

That's the whole point though. She can't/won't engage at home. Whatever is tried is resisted. If carers come for 3 hours she stops the session after 1. If they come for an hour she stops the session after 30 minutes. Now I've reduced it to just one session, once per week, and she has not even been able to do it at all.

Unless we are doing some all singing, all dancing activity (which she loves the idea of but then can't cope with so we have to come home), or she's getting food treats, she's not interested.

I'm genuinely not being negative - I would love to expand her horizons but even the psychologist is saying that we can't meet her needs. I feel like a failure but it's the truth.

We built the cabin and she's spent a total of 90 minutes in there.

It's not the course itself that I'm hanging out for. It's the hope that if she's in an environment where her full day is part of her learning and she can't just check out, it might break this pattern and allow her to engage with life.

I wrote to the LD team and said that she'd had ADHD assessments in April, I've heard nothing more, I think I've been patient and now I want action. I got a response to say that she has been diagnosed with ADHD, and the psychiatrist will send an appointment to talk through the report and discuss a trial of medication. Perhaps that will help.

The reason I don't want her straight into social care is that I know they'll allow her to do whatever she wants and eat whatever she wants, and that means she'll be in her room, doing nothing, like she is now.

@Lougle you are not a failure! Please don’t think that. It isn’t failing to not be able to do it all alone. No-one would be able to. It takes a lot of strength to realise and acknowledge that and accept you need help.

My thoughts aren’t relevant, but for what it’s worth, I think you are right to pursue an educational placement. I would be keeping that EHCP until the last possible moment. It can provide so much more than social care alone with the benefit of not having a financial assessment and the fallback of being easier to challenge.

Have you looked at any other residential options to see if there are others you think could meet needs? If you find another one you think may be suitable, you can ask the LA to consult.

@Lougle We looked at a Camphill Community in Milton Keynes - I don’t know where that is, relative to you? There are others, but they may have a different set up? The one nearest to us, is different.

The residents lived in ordinary houses for about 6. There were a range of activities in the daytime and it seemed the expectation was that the residents would do something mornings and afternoons in the week. They grew their own veg, made their own bread in a bakery, ran an onsite commercial coffee shop (for walkers), did drama, and there were workshops for pottery and weaving. I can’t remember what else. They were going to a disco, later on that day, we visited.

They couldn’t have coped with DD1’s epilepsy (no onsite medical staff) but if we had an adult DC who fitted that peer group (I guess with MLD or autism), it would be a great place for them to live. Unfortunately, they were fundraising to build new accommodation and wouldn’t have a place for 5 years (in 2021) - unless the parents could afford a house nearby and perhaps rent it out to a couple of other residents as well?

Where DD1 is, they don’t let her eat whatever she likes, because like your DD, overeating is a problem with her. They put her on a diet and she lost 35lbs until it all went skew whiff, when the metabolic disease was diagnosed, but that won’t apply to your DD. They also do their best to get her to go out every day. We struggle with that, but then DD1 is worn out by the seizures and drugs.

Camphill is about 2½ hours away. Not impossible.

@inthequietofdawn I get the impression that the LA will want SC to fund the resi part while they fund the education part, so I think it will be considered a social care placement and DD1 will have to contribute most of her income.

@Lougle DD1 had joint funding, when she had an EHC plan at FE college. IIRC, SS paid £35,000 pa ten years ago, and education paid the rest. There was even talk of tripartite funding, because the CCG rang the college up, to ask what the normal split was between health, education and SS, before DD1 went there - but that came to nothing. Considering DD1 did get NHS CHC funding, around the time she was leaving, the CCG should have contributed imo; but that was no concern of ours. As DD1 was there on an EHC plan, there was no financial assessment by SS.

@Lougle while in practice residential placements are often jointly funded, or funded three ways by health, social care and education, after discussions at the tripartite panel, DD1 needs a residential placement for educational reasons and, as such, the LA is responsible. It should not be subject to financial assessment, even if in practice it is jointly funded.

If the LA tries to pull that one, I would be challenging that.

Have you looked at The Mount camphill?

Found you I always forget it times out. Will pop back later.

My two have qualifications galore but still have the challenges of functioning as adults. Ds was in his late twenties before he had the skills to manage a job (and still needs loads of support with daily living).
Although Dd seems superficially to manage better she has different challenges and it is really not clear what her way forward is. She is physically much better with the stress of studying removed. She wants to do more than her two hours a week voluntary job but isn't sure what she can actually manage.

Lougle someone with DD1's challenges needs a whole team around her so you are really not a failure. When Ds was admitted to hospital and the whole team there still struggled initially I realised that it was not my failure that he couldn't stay at home as things were then.

I think it’s important to think about what you want your life and their life to look like. If you don’t know that then that’s where to start.

I can't imagine what life could be like for DD1. I just know that her current life isn't enough. She used to grab life with both hands.

@Lougle I don’t think that is surprising. Personally, I don’t think you need to focus that far into the future. When you are in crisis or near crisis, getting through the day/week is challenging enough. The thought of the future can feel overwhelming and can take vital headspace away from the here and now.

@NoHaudinMaWheest it’s great DD is doing better physically. I hope she can work out what will work for her and, importantly, what won’t.

I think half the problem is that she's so changeable. Sometimes she seems more able than others. Sometimes her mental health seems worse than the autism. Sometimes the autism kicks in. Sometimes the LD.... Of course it's all there all the time, but it changes her presentation hour to hour sometimes.

I've had a nice email from Mount Camphill. They only have shared bedrooms left. So that's out.