Tag Archives: direct payments

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.

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.

Choice and control

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LB gets direct payments to cover the cost of four hours care a week. Direct payments were introduced to enable “service users” [people] to buy their own care support and services. It’s all about giving service users choice and control in creating a “care package” [support] that is tailored to their needs. So far so good…

The local “care provider” [company] that is somehow hooked into the local authority contacted me to say that LB was down on their list for a residential holiday.  When his case had gone to “panel” [no idea] a few months ago, his care package was increased to 4 hours a week plus a residential holiday. Oh. Ok. What kind of holiday? Five days at an activity centre in Swindon. I wrote the cheque.

Choice? Now that’s a funny one. Choice really means a choice of two or more things. If you’ve only got the choice of one thing and nothing, it ain’t really a choice. It’s a yes or no thank you. I’d already googled and failed to find any available holiday for LB, so, residential holiday in Swindon or no residential holiday? Yes please. But lets not pretend there’s a choice involved here.

The holiday starts today. The company have been in touch a few times about arrangements, LB turned down the meet and greet opportunity and he’s being picked up this afternoon. Between 1.30-3.30pm according to the paperwork. Then a call late yesterday afternoon;

“Hi Sara, just to let you know, I should be with you around 5pm tomorrow to pick up LB…”
5pm? Eh?  Why so late? What if we’d made plans? Why cut corners?
“Oh, great! Thanks!!! LB is really looking forward to it. See you then. Bye!!!”

Control? Not really. Not when you are handing over your dude to their care for four nights and five days. And what about LB? Does he have any choice in all of this? Not really. He’s been muttering but ain’t called in his legal team yet. I suspect he’s just hoping for a few Stobarts on the M4.

 

Sunshine, support and fluffy dogs

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Old social worker: So I think if you are hoping that LB will eventually move into supported living, he needs to get used to staying away from family…

Adult social worker: Well there’s always respite at Saxon House.

Me: Mmm.. I’m not sure he’d want to go there for respite.

OSW: Oh no. Definitely not. [laughs] He hates ‘the disableds’ does LB [laughs]. He is hilarious. You haven’t met him yet but he comes out with the funniest things. [starts crying with laughter] He sat there, looking at me last time and came out with these one liners. He is totally comical…[wipes eyes]

ASW: Well there’s always Camden. That’s run more like a hotel than a respite centre. It’s like walking into a hotel and it’s all set up like a hotel. There’s a couple of them locally and I think there’s one at the seaside. And actually, you’d be surprised how many people don’t see themselves as disabled.

Me: Wow!!! Camden sounds amazing.

OSW: Oh yes. A hotel? That sounds right up LB’s street.

ASW: Well it’s all about choice these days. You know. Personalised budgets and choices.

Me: [floats off into some imaginary space full of sunshine, fluffy dogs, support and services]

The cone of shame

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Today I’m wearing the cone of shame. And it’s only 10.15am.

The direct payments police came round to ‘help’ me with my returns.

Now what does this mean? Direct payments? Returns? This… for those of you who are not familiar with this area, is about our CARE PACKAGE.  LB gets funding to cover the combination of services he is assessed to need.  So we get this funding in a dedicated bank account, use it to pay for someone to look after LB, and have to fill in forms accounting for what is spent, the interest earned and so on.

This is the bit I’ve failed on.

And this is why I’ve spent the last hour sitting at the kitchen table while some man in a suit has filled in the forms for me, while glaring LOSER at me every few seconds.  After highlighting the bits I have to sign with an enormous yellow highlighter pen AND a big biro cross, we are done.

“Oh, just one more thing Sarasiobhan, you loser”, he said. “You need to take out employer liability insurance. It’s £99 a year”.  Another form. Another swipe with the highlighter pen AND a big biro cross.

It’s over.

I walk him to the door.  “You do realise our care package is for four hours care a month?”

“Yes,” he replied.

“That is £40 a month.”

“Yes,” he said, and walked over to his car.

“Ok”.

I shut the door and go to file the paperwork neatly.

Postscript: I made that last sentence up.