The letter

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So, we get back from a nice weekend away, with the sun still shining, and there’s a letter from LB’s Transition Care Manager (ASW).

I am writing to confirm that we have been successful at panel and that your indicative budget is xxx per week or xxxx for a full year. I understand you wish to receive the budget as a direct payment and manage the account yourself. I enclose a support plan that needs to be completed before any money is released. I’m happy to start the support plan for you as a draft and then we can arrange to meet to discuss any questions you may have.

Well, I have quite a few questions.

Kicking off with who is the we? Given ASW has never met LB*, I’m not sure who it refers to?  I’ve met ASW for about 20 minutes in total and she ain’t ever met LB, so seems a bit too familiar for my liking.

And why were we successful?  Was there ever a question mark over the need for an adult care package? I find it pretty offensive really, suggesting we somehow won something. Or is this a (waste) product of current government welfare reform. WE have been successful in the wider context of cuts. Great.

What is an indicative budget? If these terms are going to be used, they should have some sort of explanation or it is meaningless (and frustrating).

Is this budget for just the period while LB is still in full time education or indefinitely? If the latter, does that mean that LB will have his case closed once this care package (xxx a week) is in place?

And if yes, how the fuck are we supposed to manage our lives, with full time jobs, around the equivalent of 10 hours a care week?

That’s it really. I’m not going to bother repeating the way in which careless, jargon filled communications like this are experienced.

Transition really is shit.

*I know.

Carer Assessment

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The long awaited Carer Assessment form turned up recently. Regular blog readers will know that I’ve been a bit confused about this assessment, and wasn’t really sure if I’d had one or not. Given that LB is 17 and it was introduced over five years ago, I thought I probably had really [must have surely…?], but I hadn’t.

So. A Carer Assessment turns out to be an A4 piece of paper with statements and prompts on both sides. No instruction, no guidance, just a piece of paper. Not sure I need to say much really. It kind of speaks for itself. I’ll just flag up the bottom of the page (pictured) ‘Any financial problems‘ section, which has got no space to write anything other than ‘yes’ or ‘no’ but includes the helpful prompt; ‘Are you receiving the right state benefits for example?‘ Er, you tell me matey,  And mention my favourite prompt under the ‘How you feel about continuing to care’ section on page 2; ‘What would happen if you couldn’t care any longer?‘ Er, you tell me matey.

Not sure which dozy bunch came up with this ‘assessment’ but if I was marking it as a student assignment, it would get a big, fat fail.

 

The adult service

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Realised I’d double booked myself for this Friday and had to cancel a visit from LB’s new social worker. The adult social worker. I then realised that a) I didn’t know her name and b) I didn’t have any contact details for her. Other than ‘ASW, Friday morning’. “Hey, crap bollock”, I hear some of you shout, “Why didn’t you write down the details at the time?”

I dunno. But I’m not sure it’s my responsibility to fact find in this situation.

When I met ASW, with LB’s current social worker, a few weeks ago, it was a pretty underwhelming situation. Chittering on, as I filled the kettle, I lightheartedly mentioned that LB said he didn’t want to meet her.

“Well,” she said, bristling, “I am his future.”

We sat at the table for ten minutes, having a forgettable chat (well apart from the bit where she defended A4E’s performance in the local authority). And made an appointment for Friday. I’m not sure what the point of the last meeting was, or this one because nothing is made clear. But I obviously needed to reschedule.

I emailed LB’s existing social worker. Asking for ASW’s contact details (and whether  she remembered her saying she was his future). I got an email back, ignoring my second question but stating the following;

  • Adult care manager is ASW, you can email her on xxxx. She will be his care manager when he transfers to the adult service. Once his care package is up and running she will then close to her. However he will remain open to the learning disability team. If you require further support after the closure to ASW then you just contact the team and they will re refer you to a care manager that is more than likely be ASW.

Eh? Sorry, but what does any of this mean? Is this social care speak? Are there some missing words? What does ‘close to her’ mean? And ‘open to the learning disability team’? What does that mean??? And why all the jiggerypokery if the outcome ‘more than likely’ is  always going to be ASW? What does any of it mean???

And why are you emailing me this crapshite piece of opaque, insider, meaningless jargon when I’m terrified enough about what the future will be like for LB?

World of Adventure

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Yesterday we had a day out at Chessington. We’ve had mixed experiences of days out at various places in the past, so the bar is set fairly low. Chessington scored high early on, for us, yesterday with their sensible arrangements for families with disabled children.

Once you’ve provided paper proof that your child is disabled (yes really) alongside the child, you get given a card which allows you to go to the exit of each ride. A staff member lets you straight on the ride after writing down what time you can next use the card for a big ride (adding the equivalent of the queue time you’ve jumped).

This works well as you don’t have to walk past the glares and stares of the main queue, who have you pegged as liggers as your child “don’t look disabled”, and the time delay between being able to access big rides is fair enough. A good example of reasonable adjustment really, removing the difficult bit (queuing) for dudes like LB.

We started with the Rattlesnake. My first ever roller coaster. Tom and Rich in front, waving their arms in the air. Me and LB behind. I kept my eyes scrunched shut, gripping the handlebars and quietly whimpering.  LB sat quiet, composed and distant, seemingly oblivious to height, speed, excitement or terror.

“Fuck that,” he said to himself when we got off 90 seconds later.

Beyond shunned, trust and what?

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LB’s now been back from his five day PGL adventure for three days. And all we know is that he was ‘shunned’ by the boy he shared a room with, he went abseiling and ate chips. He says he had a good time. He says his room mate scared him. He says he had to sleep with the light off, which also scares him. He says he doesn’t want to go again. But then he didn’t want to go in the first place.

Oh, and I also know there was a ‘staff change’ on the Saturday in the middle of the trip.

This was LB’s first ‘adult’ holiday. It was organised by a care provider company who seem to have a good reputation. As I wrote earlier, there was no choice involved. We haven’t been shown any evidence of the ‘quality’ of this company (or any other company for that matter). The local authority obviously use this company but that don’t mean diddly squat. The company has glossy brochures. A bouncy, cheerful worker does home visits and gets the forms signed. A cheerful woman picked him up and dropped him off. There is a cracking performance of bright, breezy and cheerful. But what do we really know? There’s that screaming question; Why should we trust you?

Maybe I’m being overly protective. Maybe LB went off, had a great time and loved every minute. I hope so, but that’s not the point. It just ain’t good enough. I know, historically, learning disabled people have had a crap deal, but the current context of Winterbourne, the crapheap that is the CQC, the increase in hate crime against disabled people, and so on, is hugely concerning. LB, like many other dudes like him, is vulnerable. He doesn’t have a malicious bone in his body, is loyal, loving and great company. But he doesn’t have any resources to defend himself.

I don’t like this discourse of ‘care providers’ when profit is often be the motivating factor in their operation. What ‘care’ are they providing? Are they ‘caring’ or is it more about containment? I have no personal issue with the particular company that was involved in this holiday. I have a broader issue with the way in which LB has already taken his first step into adult (almost) services and already the foundation of lack of information, choice and control is laid.

Oh, and a ‘staff change’ during a five day holiday with a group of young people like LB, in my book, is a complete fucking no no.

Shunned

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“Who did you share a room with LB?”
“Nicky.”
“Ah. Did you get on with him?”
“No Mum.”
“Why not?”
“He was very loud Mum. He scared me.”
“What do you mean? How did he scare you?”
“He told me to stop talking Mum.”
“Ah. Was this at night time?”
“Yes Mum.”
“Well you know you can’t chatter on all night when you’re sharing a room, don’t you?”
“He shoved me Mum.”
“Shoved you? Whaddaya mean?!”
“SHUNNED ME Mum, HE.SHUNNED.ME.”
“Wow. Why’d he do that?”
“Dunno Mum.”
“Did you talk to him?”
“Yes Mum.”
“What did you say to him?”
“‘Do you like lorries?’ Mum.”
“Ah. What did he say?”
“No Mum.”

My fun life

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As usual, in this excavation of my hoarded treasures, what can I say really? Some pages from my ‘holiday notebook August 4-18, 1979’; first holiday without parents at Watermouth Holiday Villas, near Ilfracombe, with big sis Tracey and her mate, and my mate Mandy. I remember having a great time, and (conveniently) don’t remember detailing aspects of the holiday so obsessively thoroughly.

My spending list, across the two weeks, was so thorough I even detailed a ‘jelly welly’ (2p) and ‘bits and pieces’ (5p). (‘Omega Factor’ was the book based on a  tv show, I barely remember). Nice to see my still favourite Double Decker there at a much lower price of course. Food, well that is a consistent theme in my diaries, so I ain’t surprised to see a meal list. I don’t remember a peach instant whip and I’m not sure what a ‘sweetheart’ is, but otherwise, standard holiday nosh. I am surprised, and a little bit shocked, about my daily weather diagrams. I was a laugh riot. Clearly.

Breakfast in London

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“Hey, boys, what’s it like having a room to yourselves?”
“Tom’s soooooo irritating…”
“No I’m not!”
“You are. You talk through everything you’re doing. As you do it! You even woke me up this morning to tell me you were going to the toilet.”
“That’s cos I didn’t want you to wake up and find me gone. You might have thought I’d been attacked or something.”
“Attacked? By what?”
“A rabid bear.”

Weekend News

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LB is back! He marched in with his PGL certificate, a bin bag of filthy clothes, shouted “HELLO MUM” and disappeared to find the laptop to go on youtube.  Any details of his five day trip will have to be teased out with Chunky Stan’s help a bit later. Just before he got back, I was reading through his school news book. Hilarious really. So similar to my diary entries in my teens with exactly the same focus. 

This entry made me chuckle. Undated it details food (banana cake), TV (Passport Control, Traffic Cops, Britain’s Got Talent, Somewhere over the Rainbow) and daily mechanics (bath, bed, sleep). He trumped my early efforts with a finishing sentence “..and I went to sleep and that’s it basically.”