Squashing, starving and filling the dishwasher

LB wants to come home. And we haven’t got support yet to have him home. The care manager is looking into options. The unit have pretty much reached the end of the road in terms of helping him. They’re upping his activity level, encouraging him to empty the dishwasher and creating some social stories.

An email from the care manager last week states;  “There is a meeting currently being arranged I understand it’s the 8 July but no time has been set yet to discuss in more detail this option [support].”

Eh?  Seriously? July 8th? No time set?

Just in case anyone has forgotten, this is an 18 year old young dude. How long is it going to take to put some sort of appropriate support in place? To enable him to come home? What value is being attached to his life? [Well I’d guess crap all to the last question].

At the weekend, LB succumbed to bear hugs from both Rosie and Owen and, just as uncharacteristically, said ‘I miss you so much’.


Today when I visited, his room had been painted. All the posters, photos, drawings and detritus built up over the last few months, were removed and piled up on a cupboard. He was kneeling on the floor. Flicking through a truck magazine on his bed. Surrounded by white walls and nothingness. Even his unwanted, unsought after ‘space from home’, was open to destruction. Timetabled to fit with some tendered/purchase ordered, person discounted process. He wasn’t happy.

It’s as if any semblance of family life, of anything and everything we’ve tried to create and achieve (including filling the dishwasher) is at the mercy of some peculiar and arbitrary non-space between health and social care, between learning disability and mental health. A space created through the provision of no effective support/care and mediated through a bizarre emphasis on  ‘choice’, thoughtlessness and the vagaries of what’s called “service provision” despite not really offering a ‘service’.

In one of those funny twists of fate? coincidence? general shite? I got an email reminder today about a new university wide autism interest group. The first meeting is on Thursday afternoon. On the distribution list was Dr X (who I’ve now re-named Doc Dire). The one who suggested we did the hunter gatherer diet and holding therapy all those years ago. There is no evidence to support the former (still) and there are, according to Autism Research, “numerous personal accounts of the damage caused to people with autism and other conditions” in relation to holding therapy. So, the advice from the experts* from yesteryear was to starve LB and squash him. And now he’s waiting in limbo, for some faceless people to “set a time” to discuss future support “in detail”.

Marks out of 10 for health and social care provision over the years?

Let’s not go there.

*The other advice from Doc Dire was to avoid support groups because they were just filled with a bunch of moaning women. Hilarious.

Beyond shunned, trust and what?

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.