It’s 4.07am in Japan and my rubbishy (non) sleep continues. It’s odd dipping in and out of unfolding developments from afar. So what’s happened on the Bubbgate front? Well, the Bubbman has updated his blog and Mencap and the Challenging Behaviour Foundation (CBF) have issued press releases to try and cover their backs. Stephen Bubb’s update is, as I would expect despite having only known of his existence for 48 hours now, an exercise in complete arrogance. Mencap and CBF have clearly been caught with egg on their face (sorry, these breakfast jokes are going to run and run) and are, like the Bubbster, proclaiming their complete conviction that learning disabled people and families must be involved in this new group. Just awkward all round.
I kind of feel despair really that no one round that breakfast table (apparently key players in the provision of learning disability provision) either thought or had the guts to say that a Plan couldn’t possibly be developed by such a narrow group of chosen few. What a clear illustration of talking the talk and not walking the walk. The complete lack of action in changing learning disability provision becomes so understandable in the face of such cosy, myopic and self interested players.
Anyway. It’s LB’s leavers prom tomorrow. He won’t get his chance to ride in the limo. The school invited us to attend and are going to let off some balloons in his memory. Rich is going (sob). As @georgejulian tweeted this morning, ‘how special that school can consistently get it so fecking right’. Yep. It is.
And how beyond depressing that so many others, with power and influence, get it so fucking wrong.
How very, very strange . Here I am in Oxford …on holiday. But today went to National Learning Disability Programme Board…my first time as chair of NVFF…
Distressed was the best descriptor of my state of mind . Why ? Due to the most recent posturing and power positioning of the Bubb Breakfast Club.
Open , edge of seat challenge was my strategy .Think my rather blunt message was understood…. Many more families and fab allies need to be ( have to be ) included in the planning and conversations .
Surprise , surprise … I have not been invited to the lunch table.. Assuming that follows breakfast with Bubb. Lunch with Les Autres?
Sent from my iPhone Co-Director Inclusion East CIC
How can they do anything else but get it wrong, when they start from a place so far removed from our everyday concerns?
My daughter has cerebral palsy. Thirty six years ago at the start of this long journey I assumed that contacting Scope might be a good idea. Surely they would be able to provide some support, information? Not really. If I wanted what they offered – a residential school, perhaps, then maybe I would have been able to see the point of them? Maybe they do what they do do very well – but I have no idea what it is. !8 years on, at the time of transition, it became administratively convenient to focus on my daughter’s cognitive problems – and she stopped being a person with a physical disability and became a person with LD, her CP (and epilepsy) pretty well ignored. I do have a slightly higher opinion of Mencap, as at least they are noisy, but they are just as irrelevant to our daily lives. So, how come they are the experts on what my daughter needs? And when and how are they going to consult me, and you, and have any understanding at all of what we need?
All that lovely money that can flow in their direction if costly ATUs are shut down. (Well, some of it, at any rate. Presumably, the government expects them to show they can be more “efficient”/cheaper.) They are not going to use it to make their own empires smaller, are they? The smaller units will be as good (or bad) as the staff they underpay to work in them. Actual assessment, and treatments that work, at home, as a right? Not holding my breath.
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