A first. Blogging twice in one day. More photos of the sunset at Hergest Ridge. Suspect as an antidote to the indescribable cruelty learning disabled people were subjected to at Winterbourne (and elsewhere). The sheep in colour this time. Because it’s all about sheep at the end of the day.
Ok. I’ve been thinking about this for a while now. But only in short bursts. I thought if I start to document these thoughts, it may a) give me a kick up the backside to explore it more fully b) contribute to discussion/different ways of engaging with young learning disabled people and c) maybe get some tips, experiences and links.
So, LB is 18 in a few weeks. He is very funny, hard working and sensible (in an unusual way) with some serious interests around transport, recycling and justice. “Transition” so far has been pretty shite as I’ve documented. The future is not looking bright.
The facts as I’ve gleaned them (not easy); He has one more full year at school after this one. After that, he will be entitled to direct payments to create support for him. What this means is not clear. There’s a chance of a further year at a local college to learn (more) life skills. Given that his sixth form are currently doing a cracking full on job of teaching life skills, I’m not sure that there is much point in an additional year. Well other than to occupy his time. After that, it’s day centres (shudder) or a life of being taken into town to go to the cinema, bowling or hanging out at home with a paid carer.
The fledgling plan..
To set up a small social enterprise scheme; get a loan, buy a small van, a mobile industrial shredder, employ a co-ordinator and run an odd job business. The odd jobbers. The idea is to draw on the strengths of LB and other young people and celebrate diversity/eccentricity. LB is an attention to detail kind of dude when pointed in the right direction and encouraged to stay there. Other young people I know have an infectious joy in meeting people (though not always joyful to their parents) and interacting, strength, humour, an ability to hang out cheerfully and other skills. The plan is to create a community presence where the odd jobbers become known about locally. People, and local businesses, enjoy the service they offer on a social, as well as financial, level. Driving round, collecting shredding, or bits for the dump, small deliveries and so on. Creating employment (for however many hours a week) and the associated benefits (productivity, achievement, activity, purpose, structure, pay and a social life) which is priceless.
There are enterprises that are doing similar type work across the country. I was pointed in the direction of Props who offer brilliant opportunities for young people in the Bristol area. But there are layers of hoops and bureaucracy to negotiate as local authorities interpret what direct payments can be spent on very differently. We had a taste of this when LB went on a “summer holiday” with a few other young men, funded through direct payments, only to come back with an extensive learning log. Oxfordshire county council insist learning outcomes are attached to funding. Props have had to create an accredited course for their enterprise. Choice and autonomy within a personalisation agenda? Forget it in practice.
These are early thoughts. It may be a vague, unattainable, undoable daydream. [Like my decluttering intentions..cough cough]. I’ve no idea how it could work in practice. But it feels better to think in terms of action. And involvement. Rather than just letting things pass by.
Had a browse through my old sketch pad that tipped up during the recent loft sort out and came across this gem.
Who is Frank Ryan? I can’t remember. It was drawn during my overland gig across Africa which makes it more mysterious. I google the name and find Frank Ryan, celebrity plastic surgeon who died in 2010 after driving his car off a cliff in Malibu, while tweeting about his dog Jill. (Jill survived with mild injury). Too young to be this Frank Ryan, but a salutary tale about tweeting about the dog while driving.
The only plausible Frank Ryan is the controversial Irish republican. I deduce this through a vague likeness to the drawing in google images, and then remember a couple of deeply political Dublin boys we met along the way all those years ago.
Why only half? No idea.
This week, LB shifted his attention to scrap metal. A break from Irish lorries but with worse sound effects on youtube. He also came back from his dad’s with a toolkit containing a hammer and screwdriver.
Last night, there was a terrible crashing noise upstairs. He’d put his die cast models (some limited edition) in a pile and was hammering the screwdriver into them.
“Whoa! Stoppit LB! What are you doing?????”
“Making scrap metal Mum.”
“Well you gotta stoppit matey. Now!”
“Why Mum?”
“Because I said so! You’ll ruin them!”
“Blimey,” I said to Rich, sitting back downstairs, “Model enthusiasts would be weeping if they saw that…”
Then I started wondering why he should stop bashing them.
“Hey, you going to the coffee morning again tomorrow LB?”
“Yes Mum.”
“Where’s it held?”
“In the church Mum.”
“Wow. Do you meet people there?”
“Yes Mum.”
“Who do you meet there?”
“Old people Mum.”
“Oh. Do you know any of their names?”
“Barbara Mum. And the other old people.”
“That’s nice. Do you talk to them?”
“Yes Mum.”
“What do you talk about?”
“Old people stuff Mum.”
“What’s old people stuff? Tell me something you talk about?”
“Getting older Mum.”
…or my commute to work.
There was an article in yesterday’s Observer reporting on a survey showing that Brits are less likely to ‘rate their doctor’ online than restaurants or holidays. Parking any engagement with the quality of the study (because it’s late), the article underlined the importance of patient feedback in informing change in the NHS and suggested people were wary because they thought nothing would change, the NHS didn’t care, they would get staff into trouble or their care would be affected.
Today I dutifully logged on to NHS Choices to rate my GP. I completed the boxes and fed back. I then read the other five comments about my surgery. An anonymous poster recommended the surgery two years ago, but complained about the leaking roof. One person complained about the lack of continuity of care. Two other very recent posters raised the same issue I’d outlined in my previous post. The sixth person, anonymous in June, wrote an essay about the wondrous care they’d received over the last 15 years. Here is an extract;
I really can’t think of how they could improve it. I marvel at how well-run it is, and how intelligent and knowledgeable the doctors are, and how kind and responsive the other staff are. When I was very ill at home once, they sent round a community nurse every day, and doctors visited me at home and phoned me several times. On another occasion I failed to respond to a letter asking me to make an appointment because of some blood test results, and the doctor personally visited my home and left a handwritten note, they were so concerned.
Whoa. We’ve been at the practice for 15 years too and haven’t had a sniff of this uber-service. I want to know more. How do you access this level of healthcare? Marvel at how well-run it is?? A handwritten, hand posted note after failing to respond to something? Responsive staff? Home visits? Concern???? This patient’s 15 year period spans the entire roller coaster experience of LB’s diagnoses and everything that came with that (too laborious and lengthy to even start recounting). Where was the GP in all of that?
*tumbleweed*
I can only hope this feedback is a plant… Ironically.
mydaftlife 