Anyone seen this piece on Riven in the Guardian?

[LindsayWagner]

It's here.

Reading again the details of her daily life reminds me a) what an astonishing woman Riven is and b) how ashamed I am to live in a country which can treat its most vulnerable members with such disdain.

I'm so glad the Graun are following up on her and Celyn's story. She says she's tired of campaigning - of course she is. I can't imagine where she found the reserves of energy in the first place - imagine it's similar to people finding superhuman reserves of strength when their lives are under threat.

There seems to be a bit of a lull in coverage of these issues at the moment, while everyone waits for the full effects of funding cuts to become clear. But at some point the gob-smacking, almost-inconceivable reality - that the cuts are being carved out of the daily lives of families like Riven's, who probably thought their lives couldn't get any harder - will be impossible to ignore. I really, really hope we don't let this one go.

'Carers allowance is £55 a week. Most parents who recieve it will have to care for their child constantly. Even if yo took away the hours that the child is at school (assuming they attend school full time) that leaves 138 hours a week.

Now lets just say that this is a lucky carer and their child sleeps say, 6 hours anight, that leaves 96.

so carers, who aren't allowed to work or else they lose their coveted £55 per week are paid a whopping 57p per hour.

'

and then you get those of us with lots of sn!

So ds1 and ds3 diagnosed aSD, ds2 being looked at for ADD, ds4 for asd 9can;t imagine we'd ever claim DLA for ds2 though in faorness, he's fairly mild though my perception of what the NT average is appears a little skwedwhiff: ds4 may be fairly severe so we will see, good language but bad other issues).

Even if you just take the 57p and divide by 2- well that worth the student debt then.

Jonny Depp?

yeuch.

I'd take the character of Sasha in Holby (character NOT the actor! I like them sweet nd nice) but nah no JD for me.

Good article Riv, and some jolly good comments to

Seriosuly I do have that article to send you but we were away and then it got hectic; can you PM me where to send it please? ta

I'd gladly contribute some money to a collection to buy Johnny Depp...

I've written to my MP twice in recent months about cuts to SN services in my area. First time I got a generic response, so I mailed again asking him to answer the blooming question. No reply so far...

I can feel a FOI request to my local council for how the breaks money is being spent coming on.

I got a reply from MAria Miller where she stated that yes the incomes of people getting middle rate care DLA for their child would drop but it ws OK as it was staged

So as long as the ASD passes as just a pahse or rents. power and food costs drop that will be OK then.

cah.

Great article.

It is an utter disgrace that the current economic cuts should affect families like Riven Vincent's. There is just no excuse for it in a supposedly civilised society. It makes my blood boil and I would love to now I could help in some way?

I like the article, informativ without being sensationalist.
hope that keeps the spotlight on this issue.
nosey question: has the book been published yet?
I remember vaguely that it was supposed to be unveiled this summer.

Riv, if you were camping on a pitch with ahrd standing alongside people willing to help with the lifting etc, would it be doable? Just thinking about next eyar, more than happy to do that alongside you. We can have matching tents PMSL. DH says that would be no issue for him whatsoever and it wouldn't be for me either- and at least you know us.

(It works both ways anyway, you were good company last time we all went away)

Hello everyone

MN Campaigns are really keen to keep this issue live - here's our campaigns page just in case you've not seen. Every Disabled Child Matters are attempting to track which authorities are spending what, though it's a bit of an uphill struggle from what I can gather.

Clearly there's concern that the localism agenda may make it harder to press for the (non-ring-fenced) extra funding to actually go towards short breaks. But local authorities have a statutory duty to report back on what they're spending/planning to spend in this area by a certain point in October (will check exactly when) - so in theory at that point we'll have a clearer picture of what's been going on, and what our next steps should be.

We'll update you as soon as we have any news - and please do let us know if you hear anything of interest, either on this thread or by starting a new one in campaigns.

Well I don;t know if it's relevant but despite ahving 4 kids in teh SN system, 2 in SN educational aplcements (well, 2 from September as DS1 going to an AS base) we stilla re not classed as qualifying for a short break. however as we are in Wales the EDCM thing does not necessarily cover it as we have the Assembly.

Riven- you are Tiger Mother. I can't help but think that Cameron must rue the day he went round yours

please carry on being shouty

I takes my hat off to you, I does. And you ain't going anywhere, young lady

...and I specially admire the way you gently turn help to the general rather than the specific.

have only flicked through this, but the jist is that we have to stalk Johnny Depp and drag him to Bristol?

And if we participate, do we get to touch him too?

Yup. I expect mr Depp on my doorstep. Did i bore you all with my Depp story yet? Me and C passed him once. In the street. And breathed the same air. He stared at C and i openend my mouth to be shouty when my eyes said 'its johnny' and my jaw went all unattarctively drooly.
Then the moment was past.

Ugh, you can have him. His looks would markedly improve with a nappy on his bonce :o

so bloody true

Ok. I will settle for Sean Bean

I've never read Riven's posts before but after reading the Guardian article am so so pleased that C could stay at home with her family. But it's just infuriating that it's had to turn into a media circus to get something done, when there must be myriad families across the country who are in the same boat yet being ignored :(

I've just emailed my MP re the Every Disabled Child Matters campaign and posted on FB to try to encourage others to do so too. Will gladly sign petitions/get involved with any other related campaigns as well. Best of luck Riven and family.

I will fight you to the death for Johnny Depp though. Seriously.

Sean Bean???

I take it all back

Oh he was gorgeous in Lord of the Rings

True enough, post.

Peachy, that's infuriating - why aren't you eligible? How is need assessed when it comes to short breaks?

...When Saturday Comes

Different councils have different criteria