Striving for change & challenging Rosa

After weeks…months even, of posting depressing grief stuff and appalling stories of shitty services for people with learning disabilities I wanted to post something positive. I’m desperately trying to feel positive at the moment and believe me it’s tricky with all the crap going on.

I was in the middle of writing a new (positive) post when this morning, my friend Liz mentioned that Rosa Monckton has been ‘at it again’ extolling the virtues of 35 ‘bed’ ‘placements’ (BBC iPlayer 1hr.33 mins in) and saying that people with learning disabilities are incapable of making their own decisions…my blood is boiling…seriously boiling!!!

She said “we have to make the distinction between people with physical disabilities and people with learning disabilities”

Can’t we just talk about people? Can’t we just talk about personalised, individual support for individuals based on their individual needs?

She lumps people with learning disabilities (and their families) together in every sentence she utters and then talks about lumping people with learning disabilities altogether in large institutions away from cities, kept safe away from everyone… like it’s a good thing! – “intentional communities”  she calls them….argggghhh.

Jim Mansell will no doubt be turning in his grave. This remarkable man made it his life work to get people with learning disabilities out of these places and yet RM wants our kids back there. Listening to her makes me feel like I’ve stepped back in time to a dark era. Her attitude and opinions  are not only outdated they’re ill informed and dangerous. Dangerous because she keeps getting airtime and far too many people get to listen to her guff!

The people she talks about and their families are rightly concerned. Any change is difficult. Of course people who have lived in the same place for decades will be worried about leaving a place they have called home for such a long time, but with careful planning and person centred approaches there is no reason why a move into a smaller home with the people they get on best with shouldn’t work…and work better. After all don’t most of us choose who we live with?

This institution may be what the people in this  ‘home’ are used to (it’s called being institutionalised Rosa!) but I can’t imagine that if you live in a large residential care home with 34 other people you get on with all of them!

If the move is done properly then staff could put together a relationship circle to ensure the people who are important to the individual stay in touch. A matching tool could be used to make sure the right staff, with the right qualities and similar interests are employed to provide the best support and the individual and/or their families could be part of the interview process. At Dimensions we now have an online e-learning course for people to learn about all the person centred thinking tools, you can read more about it here

Change isn’t easy. It’s obviously upsetting for people, but change can be a good thing. It’s change that RM seems to be unaware of and as I’ve said in previous posts the whole personalisation agenda and principles of Valuing People appear to have somehow passed her by. As someone who quotes Aristotle one would think that RM is pretty intelligent and well read and so I have to wonder why she thinks a large institutional care setting like this is safer and better than living in a community where people get to know you. Has she read Silent Victims, the Longcare scandal by John Pring? I suggest she does…large isn’t always good! …reading this book 11 years ago taught me a lot about what I didn’t want for G.

She should watch Silent Minority too….do we really want to go back to THIS?

Surely a better alternative to this archaic form of ‘care’ is people living ordinary lives in ordinary houses in an ordinary environment, alongside the rest of ordinary society. How else are we going to educate the rest of society that our children have equal value, equal rights and ensure they have equal life chances? And, yes! I get it…I know we don’t always get it right but if I’m going to fight for anything in my life it will be THAT WE TRY TO GET THIS RIGHT! and this is what so many of us are striving for.

It also should be said that families of people with learning disabilities are on high alert at the moment. Winterbourne view (and other panorama documentaries about the state of the care sector), the justice for LB campaign and the preventable death of Connor Sparrowhawk, the equally horrific story of Nico Reed and countless other horrors we hear about leave us with little faith in a sector and a system that is meant to be providing support to our loved ones.

The one thing I do agree with Rosa Monckton is that our greatest fear, as parents, is what is going to happen to our kids when we are no longer around to fight for them anymore?….well, education is a pretty good place to start me thinks! Learning about person centred approaches, staying involved as families (not just parents either…brothers, sisters, cousins, friends have a unique insight too) working with those who provide the support and helping our kids to be part of a community that gets to know them and cares about them.

Ultimately I have to say that this woman does not and never will speak for people like me… so please BBC stop giving her airtime because she’s Rosa Monckton and speak to some real families. At the very least let’s have some balance in the conversation.

So here’s some balance…

G is 24. He’s lived in his house for almost five years now. He lives 20 minutes away from me, in an ordinary house in an ordinary street and comes to stay with me every other weekend. I can visit whenever I like (usually goes without saying for me but maybe needs emphasising here). He has a great staff team who know him really well. He has a busy active life. I’m kept informed regularly (with pictures) by email and telephone about what he’s doing and how he is. His life is far more varied and richer than it could have ever been if he’d stayed at home with me.

G can be described as having profound learning disabilities. He doesn’t use words to speak but communicates his needs and likes well because people who support him take the time to understand him (use person centred approaches and involve the people who know him best) this brilliant blog by Jenny Morris earlier this week explains this beautifully. (this was meant to be the focus of my positive blog post but my rant took over so I’ll have to revisit at a later date in more detail)

Here’s a casual, regular type message I received today from Sacha, one of his lovely support team –

Hi there Gail, just a little hello from Guy & Sacha

Hope you are well.

Guy really enjoyed his weekend with you as usual, he came back in such a happy mood. He has been a real happy chap the last few days, making jokes out of anything!

We have been making the most of the sunshine and going for walks and picnics. He especially liked abbey meadows (plenty of safe space to run around). Guy has also been spending loads of time in the garden, he loves eating his dinner out there at the moment!

Not much to update you on, all is well just thought we would send the recent photos from the ipad”

looks like G’s having a pretty good life ‘in the community’ doesn’t it?

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About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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