Blogging way more than I want to. That’s my measure that things are wrong. I wish they were more right and I could fuck off out of this space for more than a day.
Anyway. Big charities have been playing on my mind since LB died (and earlier). I had a bit of a pop at Mencap and The Challenging Behaviour Foundation a week or so ago for releasing a press release stating they were supporting us. We didn’t feel they were ‘supporting us as a family’. We discussed this with them and appreciate they are working to support our efforts for change and are working for broader change. Some issues around communication…
My sister, love her, emailed the NAS (among other organisations) last week. The way in which family, friends and others are doing things to help just makes me dissolve. Every time. She got some craphole, round the houses response, along the lines of ‘thanks for flagging this up’ loser.
This was duly tweeted (unfailingly) by #justiceforLB and eventually ‘acted upon’ with a tweet from the NAS saying that what happened to LB would be shared with their followers and friends. Not sure what the difference is between the two groups but suspect money may be a defining factor. #Allegedly
The big share from NAS turned out to be tweeting the link to our solicitor’s press release. Eh? Big commitment by a charity founded in the 1960’s by families of children with autism. No statement about the death of a young autistic dude in an NHS hospital? No engagement at all really.
The Tizard Centre, also love em, called on the NAS to show the 90 second video montage of LB at their conference this week. Silence. Of course. Then the CEO tweeted this, earlier tonight (the day before the conference);
Seriously? Bit late to ask this really. Shouldn’t this be a call to arms for a charity set up to support families and people with autism? A scandalous level of care in an NHS setting leading the death of an 18 year old young man. Isn’t this sending shock waves through the NAS?
If it isn’t, what the fuck do you do?
Update: Mark Lever mentioned LB in his speech and various NAS people have been in touch offering help.
mydaftlife 
What about EPILEPSY ACTION death in the bath it should be all over their web site
Good question Shirley. We’re still waiting to hear from them. Hoping the old learning disability tag doesn’t deflect em…
What is wrong with people and especially these so called charities that are supposed to be supporting us parents and our children .Shame on them AGAIN……………
Yep, we are getting some movement now (see update above) but only because we’ve got a bit of bite now with our army of volunteers.. Sigh.
It really is time for BBC Panorama to step in and take the reins!
We’ve been dealing with the NAS on and off for years as my husband uses their support. This reaction from them seems pretty typical of the organisation.
I got what the NAS were about when they kicked son out of a day service for becoming challenging. Mark Lever couldn’t even get the name right when responding to my concerns. I have since learnt I wasnt alone in this NAS experience. If the NAS do anything now regarding LB it is only to save face.
We had exactly the same experience as Lisa. Our son became challenging at an NAS day service. We were shown the door, no help or assistance, just left. We complained to Mark Lever (as chief executive) and he didn’t get our son’s name right either. Bunch of self serving idiots!!
Turn to the small charities – http://www.respond.org.uk we’re busy really supporting families
I have absolute respect for Respond and other small charities, Noelle (Yellow Submarine, My Life My Choice, OxFSN, etc etc). Staying true to what matters. 🙂
Ever since the NSPCC joined forces with the previous government to attack home education – sinfully using the death of Victoria Climbe to attempt to muddy the waters (they failed and had to offer an apology to the VC Foundation) I have had no truck with any big charity. They are all about the money and bugger all else, why would they be? If the problem disappears, so does the need for them! So it seems that they are part of the problem not solution. I think smaller charities and individuals is where it’s at, though it’s hard to be heard above the noise makers, with concerted effort it is possible, and often more powerful (as home educators discovered) – think of the hydra!
Yeah, we’ve always said that charities should really be working towards their own demise, rather than building an empire. Sigh.