Justice for LB – the Webchat (Day 13 of 107)

This evening we were fortunate enough to be joined for a live web chat by Sara Ryan, mother of Connor Sparrowhawk (or LB as he is referred to in his mum’s blog My Daft Life)

We wanted to share the details of the chat with everyone who wasn’t able to make it (we had over 200 people on the site during the chat).

Sara, What do you hope to achieve with the 107 day Campaign #justiceforLB?

The #107days campaign began as awareness/fundraising gig dreamt up by George Julian. We wanted to create an inclusive, unformed space (well unformed apart from a flipchart) in which anyone can contribute some sort of action in celebration of all things dude. It’s pretty organic and is capturing a bloody brilliant set of activities and contributions. We’re just blown away by the response, enthusiasm and complete engagement with it… Just goes to show really it’s more the system that writes our dudes off than general public..

Do you think the 107 day campaign can become an annual event? I am taking part btw by sending a postcard of awesome #justiceforlb

Hi Magi,
Thanks for sending a postcard – My Life My Choice are storing em for us and they are fantastic. We’re feeling our way a bit here and are unsure what we’ll do to pull all this goodwill, commitment and passion for change together but I’m sure we will mark it annually in some way

Many of us have young disabled people who are very vulnerable.
If you could give us one message what would that be?

Katie, eurgh. That’s a toughie. So hard when we’re almost socialised to expect crap support and services for our kids from the word go. I’d say stay strong and assertive (ignore any pushy parent crap), try and keep a clear lens on and maybe say to anyone who isn’t doing what they should be doing in terms of providing something for your child – “Can you just imagine for one minute that this is your child we’re discussing here? What would you think about x, y or z…. if it was…” I never did that but wish I had now.

I expect the Justice for LB campaign has already racked up significant legal costs to establish that Connor’s death was preventable.
If in the future there is an inquest, and possible prosecutions (corporate/individuals/public/private), what practical and financial things can we do to help?

First of all I’d better say that C.Wilson ain’t a plant.. but it’s true. Shameful that we have to pay for legal costs to make sure there is full accountability for LB’s death and the Slovens can just draw on their reserves to try and crush us (allegedly). We’re fundraising by selling LB’s artwork in the form of postcards and pictures and the #107days has some fundraising activities which is fab. Buying a postcard or two would be fab – they are awesome! (Thank you)

So being the bad cop is really the good cop. I call it being the Director of Quality.

We shouldn’t have to be bad cops though. It’s terrible being forced into an embattled space where you’re fighting for the most basic support which most people would never accept for their kids.

It would be good if this could be an annual ‘event’ to remember, protect and be a voice of change xx

Yes

If you could stand in front of a room of practitioners and give them three top tips on doing their job well, what would it be?

I don’t have any expertise more than any of you lot. Just happened to have been pinged into an extreme space… But I suppose

Listen

Reflect

Act

What is the link for the postcards Sara so we can advertise that ?

http://sarasiobhan.wordpress.com/2014/03/31/fundtastic/

Sara, I am going to quote from one of your posts:

The acceptance of the unacceptable is common when you’re a parent of a disabled child/adult. Well, and among commissioners, providers, health and social care professionals, support workers and so on. Particularly in the fabric of ‘learning disability provision’. The bar set so low that accepting mediocre becomes a default position. We’re almost socialised to create an ever present bag of excuses and rationalisations for non-existent, inappropriate or partial services.

Our bag steadily filled through grinding years of negativity, deficit/tragedy orientated thinking, assessments, meetings, input by (often ill informed) ‘professionals’. Through jargon laden discussions, unintelligible emails/letters/reports and of constantly being told, explicitly and implicitly, that resources were limited. There was never an imagined future for LB. The vague future bandied around was mealy mouthed, thoughtless, mediocre or worse, budget driven and set within silos of ‘available service provision’.

The full post can be read here

Why do you think we have come to the situation where, as families, we learn to accept the unacceptable? And how can that change?

Mmm. First bit is quite easy.. most of us have no experience of dudes and so arrive at this party with no knowledge other than the negativity that surrounds them. As soon as we get to the party (which we ain’t been invited to officially and don’t want to be at) most professionals treat em as not worthy. This is endorsed by the terrible support and services available to enable families to live lives that allow awesomeness to be recognised and enjoyed. The service provision battering ram operates to make sure we all know that services are limited, that we’re lucky to get what we get, there are a hell of lot of families who don’t get what we get and it could be swept away at any point anyway.
That’s before you get to transition.
At that stage, knowing the experiences of those who went before you, your expectation is zilch and your fear full on.

How can that change? Dunno, but we’re trying. And with this kind of response and outrage to what happened to LB, if we don’t get anyway, I’m out of thoughts.

“By the way, did I really write that extract? Bloody brilliant.”

 Your blog is “bloody brilliant” throughout! Quite inspiring.

Speaking as a parent, I cannot begin to even imagine how the last year has been for you. What alternatives to the Unit would you like to see more of and how would they work better?

Suspect there will always need to be a space for some dudes to have proper, effective, person centred encouragement and support. As an alternative for the dudes who shouldn’t be in these hellholes, I’d like creative, fun, well resourced, flexible gigs with enthusiastic, committed and clued up staff (well paid) with a good dose of interaction with the community. Bit like the fab project in Bristol (Props)… Any dude who spends most of his or her time interacting with a support worker rather than other people is being denied basic humanity.

And yep, the last year has been unimaginable.

Am I right in thinking that the likes of projects like PROPS cost less than Units but with much better outcomes?

Haha! Genius. Yep I think you are. The unit LB was in cost £3500 a week. Unbelievable. I was at a talk recently where some woman was kept in a room in a unit (literally) at a cost of £1900 a day for 9 years. The person giving the talk put up a photo of the best suite at the Ritz which was £1800 a day. And yet the demand for Props (as with any good provision) outstrips what they can offer because of a lack of ‘funding’. We’ve got it completely wrong.

I think it would be interesting to find out what a project like PROPS costs if they were to offer it to all those who did not need to be a unit but were due to lack of alternative provision.

Question from Sara to the group:  “I’m interested in what you think about all this (not so much about what happened to LB because that’s pretty obvious) but about accepting crap provision and lack of change?”

As a mum, this scares me senseless. I have three children with statements, two of whom will need support as adults. With the current changes in SEN reforms, I fear that the legislation will not be enough to change the culture. It is the culture that needs to change, there are some great practitioners who want to make a difference but sadly, many who just wish to tick a box or fit you into one.

Is there anything you need for your campaign that you are currently not able to find – a skill, a talent, etc? Is there anything you need that we can ask for during tonight’s chat?

We’re open to any talent, any skill that’s going! Not sure what we need right now though we are planning a bit of a summing up reflection type post around the half way mark. One of the delights about #107days is the ways it’s kind of bringing together such a diverse range of talents, abilities, skills and delights… I love the ongoing 107 day actions like the daily blogging and photo posting, I love the bubbling bits like the postcards of awesome, the bus pictures on our facebook page and the letter by the Tizard gang that is still collecting signatures and then I love each day. I mean what campaign would have beach art, two Yorkshire villages joining forces for a community day, a hair show, Healthwatch, a web chat stories and comment? And we’re only on Day 12! There is so much preciousness still to come it’s fab. And a remarkable distraction for us from thinking back to a year ago.

Have you been disappointed by the lack of support from some areas?

I’ve been surprised by the support from some areas and more weary than disappointed about the lack of support from others (because I kind of expect it – that old low bar again).
I think what happened to LB is so off the scale of anything I can make sense of, I (keep saying ‘I’ here but only because I’m sitting here answering these questions, Rich and the kids I’m sure agree) that the rules I used to abide by reasonably obediently have dissolved. We fully expected the NHS to keep LB safe in that unit and never for a second thought he might be at risk (well outside of being restrained of course). For him to actually die through complete neglect and disregard for him as a person, and the exclusion of our understanding of him, is unspeakable. We’re kind of in a kicking shit space. Especially when you factor in the whole Winterbourne situation and the handwringing/all talk no action since then. So yep, weary that charities that began to support families are apparently cherry picking their fights and actions.

Sara, we have to continually challenge whether it is unacceptable or just not good enough.
my daughter does not put up with poor support and has no patience for staff (PAs) who are perhaps not skilled or good enough to tick all her boxes. She feels so confused when she has poor support, and does not really know what to do with those feelings. last night I actually said that when she moves out she will, now and again, find people in her life who do not listen and understand how to communicate with her. But sadly she may have to, now and again, just grin and bear it for a while. Is it better to have to grin and bear it than be put in a more vulnerable position with no support at all? Which is worse?

Sob. For you to have to write this shows how badly our kids are being let down. Health and social care peeps with power should feel ashamed.

Sara finished by saying “I’d strongly recommend parents get on twitter, hook up with other parents and thrash these issues out in public”.

This is the whole ethos of Bringing Us Together.  We want parents to know that accepting the unacceptable is unacceptable.  We want practitioners to know they can throw the box away without trying to tick it or put us in it.

We will be supporting the campaign – we are day 13 of 107.  You can follow the campaign here.  You can find Sara on twitter @justiceforlb @sarasiobhan and you can find us @bustogether

 

You can find Sara on twitter @justiceforlb@sarasiobhan and you can find us @bustogether

 

Please help Sara to get these issues out there in the public so we can all stop even considering accepting the unacceptable.