Week 15: The Tale of Laughing Boy #107days

So we’re here again, the end of #107days for the second time. It is hard to believe it’s now two years since LB died. There really aren’t any words. Today we’re pleased to be able to share The Tale of Laughing Boy with you.

Produced by the brilliant My Life My Choice and Oxford Digital Media, with funding from Oxford City Council, grab a cuppa and sit back to watch.

Thanks to each and every one of you who have supported #JusticeforLB these past two years and both #107days campaigns. As Sara says of the campaign in the film:

‘These people haven’t met Connor, they don’t know Connor and yet they recognise the injustice of what’s happened, they recognise what a quirky and colourful individual he was and they’re acting, and they’re prepared to say this is wrong and join in. I think that’s absolutely amazing, it’s been so heart warming and so reassuring that so many people have stepped up and done all these different things and got in touch, and are really moved by it all. They just get it, I think that’s great, that has meant the world to us’.

As for Sara’s hopes for the future:

‘My beyond wildest dreams would be that… we didn’t even have to talk about learning disabled people, because there wouldn’t need to be that division, because everybody would have a right to live where they choose, everybody has an imagined future, and the distinction between being learning disabled and being non-learning disabled would become sort of irrelevant, because it isn’t an issue’.

Final word goes to Rich:

‘In many respects the world would be a lot better place if we all behaved more like Connor and less like not-Connors; his sort of approach to life was so straight forward and simple… uncomplicated… you just sort of think I wish I could be more like that, I wish we could all be more like that… we should all be more like Connor and people like Connor and the world would be a much better place, and it would be a much more inclusive place, and actually we might all enjoy it a bit more.

Imagine, just imagine for a moment…. and ACT!

Week 13: What I learned from 10 weeks working in a large disability charity head office #LDWeek15 #107days

This post offers personal reflections about an experience just over two years ago. It is my (George Julian’s) opinion, reflections and memory. I offer it as food for thought for #LDWeek15 as JusticeforLB Week 13 continues to explore whether charities are part of the problem.

This post is not an attack on all (or any) charities for an attack’s sake; it is not fiction or exaggerated; it does not question the intention of the many, many excellent people who choose to work for a charity, although it does question the blanket assumption that all who do are quasi saints! I’ll come to that point.

My experience

After eight years working in a (very) small national organisation, trying to make a difference to people’s lives within many constraints, not least working underneath the umbrella of a very confused, multi-purpose charity, it was with joy in my heart and a spring in my step that I pitched up for the first day of a maternity cover post in the (self-named) leading learning disability charity in the UK. I was due to hold the position of Head of Research and Impact, a perfect match for my skillset and professional expertise and qualifications. Having completed a PhD looking at the education of profoundly disabled children over a decade previously, I was delighted to return to the learning disability arena and confident with a focus on research and impact had a contribution to make.

My experience was short lived however and I left after 10 weeks. There were many reasons for this, including large scale restructuring within the organisation and my complete disillusion with what I found, compared to what I’d expected!! The thoughts that follow have percolated over the last two years and I offer them now for debate and discussion.

I have written a series of general statements that emerged from my experience, I’d welcome your contributions and comments and would love to receive examples of where my generalisations are misguided, I genuinely hope a lot of them are.

1) It is incredibly difficult to critique a charity I’m not sure whether this is a uniquely British stiff upper lip, terribly polite, hold our resolve thang, but it seems to be incredibly difficult to in any way to critique the work of a charity. Invariably it is met with at least some suggestion or kick back that you’re somehow a) being unfair b) denigrating the brilliant people who choose to work for charities c) are unaware of their exceptional work and so on, and so on.

2) It is also difficult to be a dissenting voice within a charity I suspect for some similar cultural reasons as are at play in the first point, together with an unhealthy dose of confirmation bias, it is hard to truly challenge within the hallowed walls of head office. A relatively new CEO and a senior management team looking to assert themselves all too readily overlook those within their teams, rushing to squash autonomy in favour of compliant flag wavers for their latest strategic plan.

3) Not everyone who works in a charity does so because they believe in the charitable cause, nor are they necessarily exceptional at their job Pretty much like any organisation, there are good and bad within charities. A quick glance at charity accounts will show that this doesn’t always come without a cost, seemingly huge amounts of charitable funds are spent on redundancy or termination payments.

4) Not everyone in a charity is poorly paid I’m not for a minute suggesting that they should be either, however, if your CEO is taking home over £100k I’d sort of expect them to be bloody good at their jobs, and at the very least for the charity to be effective and innovative.

To give you some perspective on this, I had a quick look at Mencap’s 2014 Annual Accounts and can share that their senior management team salaries minus pension contributions (I assume it is them given they’re all on £60k plus) are as follows:

£60–70k: 8 staff members

£70-80k: 6 staff members

£80-90k: 2 staff members

£90-100k: 3 staff members

£100-110k: 1 staff member

and presumably the CEO, one staff member, takes home £130-140k.

These are not insignificant figures, and this total spend on large salaries, sits alongside 7 staff members who took home over £60k when including their termination payments (1x 60-70k, 3x 70-80k, 2x 90-100k and 1x 110-120k).

5) Excessive staff turnover or excessive staff retention – pick your poison The uninitiated may look at the salaries and termination payments above and consider 2014 an unusual year, a new CEO obviously changed the strategy at Mencap.

However a tiny dig beneath the accounts surface reveals that in addition to the 7 staff members taking home over £60k including payments when their contracts were terminated in 2014, there were 5 in 2013, 13 in 2012 and 11 in 2011.

If we assume a mid range payment in the bands offered that’s £595,000 in 2014, £615,000 in 2013, £960,000 in 2012 and £975,000 in 2011.

How can any organisation defend such waste?

6) Large, national, leading charities are no more organised, slick/devoted/competent than many smaller charities or organisations with tiny staff teams Perhaps the biggest shock for me on arrival in head office was how inefficient, uncoordinated and generally uninspiring life was. I’d fantasised about a large charity being a slick operating unit, about IT services being efficient, strategies and action plans being in place, coherent strategy and measurement processes. Who knows, maybe it is unrecognisable in its progress over the last two years, but my experience was of a chaotic and confused organisation that struggled to understand what its priorities were, never mind any of the rest.

7) Business and turnover are key In one way you could argue this is par for the course, a sign of our times, inevitable – that business should dominate charitable activity. Indeed, given the salaries paid for the management team, you’d almost welcome efficient and competent business drivers underpinning all activity, that could then ultimately improve the lives of the people it is meant to support. The reality in my experience was that money talked, anything could be written into a funding bid to secure funds, that was more important than due diligence of the activity that followed. I suspect my experience was in no way unique but it appeared that on too many levels the money tail was wagging the dog; projects and bids were devised to meet funding calls, strategic plans (where they existed) were adapted and tweaked to meet a newly funded ‘need’.

I’m no business expert, it’s not for me to say whether this is an appropriate course of action or not, I’ll leave you to make your own mind up. That said, if you have no vision, or if your vision is embedded wherever the latest pot of money is, rather than where your end beneficiaries are, you probably shouldn’t call yourself a charity!

8) You can hide anything you like with ‘good’ reporting and messaging Call me naïve but I desperately wanted to believe that the focus would be on the charitable aims I’d researched before deciding whether to take the post; campaigning, improving people’s lives, supporting learning disabled people – what’s not to like?

What I observed was that reputation was key; managing the message was as important (if not more important) then delivering on quality or improvements for learning disabled people.

If any charity believe in what they stand for, then just get on and do what you’re aiming for. For example, if your focus is on supporting learning disabled people to get work, employ them. Not one or two tokenistic people who can be sat on the reception desk and brought out for public events, I mean really employ them. If you can’t manage to walk the walk within your own organisation how the hell do you expect the rest of society to? Which leads me to my penultimate observation…

9) Beware of values that are for wallpaper not for living by! Everywhere I looked during those ten weeks I’d see value statements, they were stuck on the walls, in the lift, on the screensaver that flickered across your laptop; bold, ambitious, optimistic values, but to be honest that’s where they mostly stayed. If you have to plaster your values everywhere then they clearly aren’t embedded within your organisation.

My experience, and I’d go as far as to say those of many other colleagues there at that time, did not reflect the values being espoused. If you can’t treat your staff well, if you can’t treat the beneficiaries of your charity well, if you can’t actually make progress to what you’ve been talking about for years, maybe it’s time to shut up shop, redistribute the wealth and let some others have a go.

10) Stop speaking for – give up the power I’m not sure how anyone can be the ‘voice of’ or how it helps. Maybe it’s time to stop speaking for and just give over the power.

Week 13: Does awareness raising go far enough? #LDWeek15 #107days

Today we find ourselves in the middle of Learning Disability Week 2015 #LDWeek15. We thought we’d use Week 13 to ask a question which many seem very uncomfortable with, are charities part of the problem? We’re starting off with questioning awareness raising.

So, what is Learning Disability Week I hear you ask?
It’s an awareness week run by Mencap, who simultaneously advertise themselves as ‘the UK’s leading learning disability charity’ and ‘the voice of learning disability’. Quite some accolade to give yourself, and quite a claim to live up to.

Each year for Learning Disability Week Mencap pick a theme for the week and seek to ‘raise awareness’ of the issue in hand. The week has traditionally been in June, although there was a slight detour into August in 2013, but business as usual returned in 2014.

What does LD Week focus on?
Each of the issues that feature in LDWeek are an existing Mencap campaign or priority, so if you were to take a cynical view one perspective could be that they are using a national awareness raising week to raise the profile of their organisation and do work they’re committed to doing anyway. Regardless of that, let’s take a look at the focus for the last few years:

2009 saw a focus on accessible toilets and Changing Places

2010 was equal healthcare and ‘Getting it right’

2011 turned the spotlight on Disability Hate Crime

2012 stuck with Hate Crime; perhaps there was a delay in planning, or no other issues that needed attention given toilets and healthcare were ‘done’.

The CEO at the time stated: “The reason we went back to the issue this year, is because we’re making good progress,” he explained. “We’re making great progress on working with the police in a way that will lead to a steady reduction of hate crime and a tackling of the perpetrators. There’s much more to do, though”.

2013 took a slightly surreal turn about, where presumably having sorted hate crime, healthcare and toilets it was time to celebrate. The August week focused on, wait for it, superheroes!

Who is your superhero? Celebrating families ‘amazing, brave and selfless people’. Which is an interesting way to frame learning disabled people and their family members! We’ll come back to that later.

2014 stuck with a theme of celebration, after all there were obviously no burning issues that needed raising awareness of in these two years.

The billing for the week asked: Do you remember your first? We asked you to celebrate people overcoming adversity, and people’s prejudice and ignorance to experience their incredible firsts.

2015 Bringing us up to date, this year the tone is less party and more traditional with a focus on Hear My Voice and listening:

We’re reaching out to the newly-elected politicians and people in a powerful position to tackle the myths and misconceptions about learning disability that fuel prejudice and inequality.

What format do these awareness raising weeks take?
A quick search on the internet will provide you with a range of approaches to raising awareness during LDWeek, with some grassroots activity across the UK.

That said there is also a bit of a format at play, whereby every year Mencap Head Office beam with pride as they celebrate the success of learning disability week (usually by the Friday on their website or early the next calendar week) that involves:

a) a London launch event or soiree at Westminster
b) a few mentions in the media
c) a new film or media soundbyte to use
d) some airy celebrity promises of support
e) a Charter or commitment for people to sign up to.

Anyone with a rudimentary knowledge of measuring impact would be able to see that these blogs ‘celebrating success’ are focused purely on activity and not on impact or outcomes.

The other consideration is positioning; what message is being shared about learning disabled people and their lives? Are we celebrating them as superheroes? Really? I’ve yet to meet a superhero, learning disabled or otherwise. Are learning disabled people and their families brave, overcoming adversity, pioneering?

Or are they just like you and I. Human beings, wanting human rights. No more, no less.

A question of impact
So all of this activity leads to what exactly? It’s not for us to offer an answer, we’re simply asking the question, but we would like to hear about the impact of such a large amount of focus.

While it is no doubt reassuring to the senior management team to tick a box on the annual strategic plan, and external profile raising never goes a miss, one can’t help but wonder whether all this talk and awareness raising leads to very little change.

Later this week we’ll take a look at charity accounts and some of the positioning of charitable activity. All thoughts and contributions very welcome as ever, drop us an email if you’d like to blog on this.

Week 11: #PMBBallot results are in…. #107days

As you’ll all have been aware the last two weeks, Weeks 10 and 11, have been given over to the #LBBill in the Justice Shed and in #107days. After truly sterling work by you all we’d managed to contact 338 MPs before the Private Members’ Bill ballot #PMBBallot was drawn.

The ballot saw 462 MPs names into the hat, and twenty drawn out. There was much excitement amongst JusticeforLB’ers as the first eight MPs drawn had all been contacted about the #LBBill, not bad for a campaign run entirely on love and creativity with absolutely zero resources. However the slots are drawn in reverse order and our luck turned a little, so the excitement was short lived.

In the end twelve out of the twenty names had been contacted to request their support for the #LBBill before the ballot, including three MPs in the top seven. So we still have hope.

1. Rob Marris, Labour MP, Wolverhampton South West

2. Chris Heaton-Harris, Conservative MP, Daventry

3. Sir Gerald Howarth, Conservative MP, Aldershot

4. Julie Cooper, Labour MP, Burnley

5. Wendy Morton, Conservative MP, Aldridge-Brownhills

6. Teresa Pearce, Labour MP, Erith & Thamesmead

7. Mike Wood, Conservative MP, Dudley South

What we now need is for JusticeforLB’ers to contact their friends, families, colleagues and long-lost lovers who live in the constituencies represented by the MPs with the top slots (listed above). MPs are expected to represent the priorities of their constituents, so we need to make sure constituents in these areas raise their concerns and request support for the #LBBill.

We shared a post yesterday that you can read here with some suggestions of what you could do if your MP won a golden ticket in the ballot, please share with friends and relatives in the areas above. If you have media contacts in those areas who would like to run a story on the #LBBill and its relevance to local disabled people then please out them in touch with us too on email. We would encourage supporters to try and raise support in those areas rather than contact the MPs direct (unless they are your own MP). This is only likely to irritate MPs if you are not their constituents.

If you live in one of the constituencies above, please do contact your MP and try to encourage them to support the #LBBill. There is stacks of information on this website and the dedicated LBBill blog here and the full draft, and all the iterations it has been through is also there.

If you’re need a little reminder of why it’s worth your while, check out this slideshare, that includes at least one constituent of the MPs listed above:

Week 11: What to do if your MP wins a golden ticket in the Private Members’ Bill ballot #107days

This blog post, on the eve of the Private Members’ Bill ballot #PMBBallot makes some suggestions of what to do if your MP wins the golden ticket in tomorrow’s ballot (and some of them might be useful even if they don’t).

Thanks to the unstinting efforts of #JusticeforLB’ers across the country, at the time of writing over half of all MPs (333 out of 650) have been contacted about #LBBill. This is a huge achievement in just over a week, and reflects the entirely crowdsourced nature of the Bill so far.

Our campaigning is far from over though and we need to redouble our efforts at 9am tomorrow, when the ballot for this year’s Private Members’ Bills takes place. The House of Commons twitter account has been highlighting the role of PMBs and using the #PMBBallot all week, so we’re hopeful that they may live tweet it and if you’re online you can watch it on Parliament TV here!

Did you know backbench #MPs can introduce Bills for debate in the Commons?http://t.co/6FpbWYzvSI #PMBballot pic.twitter.com/yaopmcMlP8

— House of Commons (@HouseofCommons) June 1, 2015

Shortly after 9am we will know the names of the MPs who will have the chance to present a Bill of their choice to Parliament. As explained in a previous blog on the LBBill site we need one of the top six or seven MPs to take #LBBill for it to have a real chance of becoming law.

Therefore we’re asking all of you to check Facebook or Twitter as soon as you can after the ballot tomorrow morning to see if your MP has drawn one of the ‘golden tickets’, that is to see if they came high up in the Private Members Bill ballot.

If they have, then these are some suggestions of things you might do to get your MP’s attention and persuade them to sponsor the #LBBill:

1) Tweet your MP. While this only takes a few seconds our experience so far is that not all MPs engage with their Twitter accounts (indeed some still aren’t on Twitter). So please do this, but don’t just do this! 140 characters is limiting but please try to get across why #LBBill matters.

2) Email your MP. We won’t win any prizes for originality with this suggestion but emails will go straight to the MP’s staff and experience is showing supporters are getting better engagement from emails than tweets. Explain to your MP why #LBBill matters to you.

3) Phone your MP. You can ring the House of Commons switchboard on 020 7219 3000 and ask to be put through to the office of your MP. Be sure to say you are their constituent, you are calling because you know they have been drawn high up in the Private Members Bill ballot and that you would like them to sponsor #LBBill. Explain why the Bill matters from your perspective. If you can’t reach your MP ask for their researcher.

4) Send your MP a letter. Despite being a little bit obsessed with the power of social media to engage with politics, we also love getting post and think your MP may too. Why not dig out your finest writing paper, or dig in to your stash of LBBus postcards and write to your MP. Be sure to do it quick so it reaches your MP before they decide on who to support. If you have children or artists you’re keen to engage, why not send your MP an LB Bus picture too and explain the significance.

5) Go to your MP’s next surgery. All MPs hold surgeries where their constituents can go and discuss local issues with them face to face. Check your MPs website, look in the local press and find out when their next surgery is to be held. Maybe try to get a group of people together to go and see them. If you are going as a group you might want to contact your MP’s constituency office (as opposed to their office in Parliament) and let them know in advance.

6) Go to see your MP in Parliament. If you contact your MP by email or by phone (see 2 and 3 above) you could ask for an appointment to go and see them in Parliament – and perhaps take friends / a local group with you. If you meet in Westminster you may also be able to get a tour round Parliament!

7) Invite your MP to come and meet you. You might like to invite your MP to come and meet you and your family at home, or to come and speak to a local group your involved in. MPs generally want to engage in their local community and it will help convince them of the need for action if they get an insight into people’s real lives.

8) Hold a #JusticeforLB pop-up picnic or party and invite your MP along. The idea for pop-up parties was first shared back in April (see Action 3 in this post) and we’re keen to ensure everyone, regardless of any disability they may have, gets the chance to attend. This is a great chance for a number of people to get together, have fun and meet your MP in an informal setting.

Even if your MP is not a lucky golden ticket holder, their support for the Bill could be key. The more MPs that are aware of the challenges facing disabled people, the origins of the Bill and how it could improve disabled peoples live, the better. The one key element of any action at this stage, is speed.

MPs will be starting to commit to particular causes in the hours and days after the ballot. So please do contact your MP as soon as possible, even if just by a quick tweet, email, letter or call. You can always follow up with something more creative.

Some resources that might help you are:
– The quick guide to the Bill
– The full text of the Bill
– Explanatory notes, which deal with the technical issues
– A film which explains where the Bill came from and what it would do
– A blog from Sara explaining why the Bill would have made a difference to LB
– A blog from Steve explaining why the Bill is needed in the light of the Care Act 2014

You can include links to some or all of these when you contact your MP, but they will definitely need to have the full text of the Bill to hand. You can download it by clicking here: LBBill Draft 2

If your MP has any questions, they can send us an email to LBBillFeedback@gmail.com or tweet us @JusticeforLB and we will arrange for someone from the LBBill Team to call them.

Don’t forget if your MP isn’t chosen at the top of the ballot (a highly likely event) that you can still email or tweet them asking them to contact their colleagues who have been successful in the ballot and support the Bill. Peer pressure is very important!

Finally, there will be thirteen MPs who are picked at 8-20 in the ballot who will get the chance to sponsor a Bill but without any realistic prospect of it having enough Parliamentary time to become law! If we cannot persuade any of the top seven MPs to sponsor the Bill we would be delighted for it to be picked up by any of these MPs as a chance to keep the pressure up. So if your MP is picked in a lower slot please still contact them.

Thanks for your support so far, and for all the work that will follow Thursday’s ballot. Some of you potentially hold the keys to the next stage of making the #LBBill law and are about to have a very important role to play in the campaign! As ever, we could not do this without you, so thank you.

Week 11: Raising awareness #LBBill… the story so far #107days

Last week, Week 10, we asked the amazing collective of campaigners that make up #JusticeforLB for help. We asked you to tell your local MP about the #LBBill and ask for their support in the forthcoming Private Members Bill ballot on Thursday. We asked and you delivered, we couldn’t be prouder or more grateful for your response. This is what the #LBBill map currently looks like:

We know that the map gives a good overview, but that it’s hard for some of you to see whether your MP has been contacted. That’s ok because we’d like all MPs to be contacted as many times as possible, we think it’s important that MPs know their constituents are interested and keen to see the provision in the #LBBill enacted, so don’t worry about duplication, that’s a good thing.

We know now that 285 MPs (out of a total of 650) have been contacted about the #LBBill. It is only a week ago that we asked for your help, and what a response in a week. Of the 285 MPs who JusticeforLB’ers have contacted, 137 are Conservatives, 1 Green, 113 are Labour MPs, 4 Liberal Democrats, 4 Plaid Cymru, 25 are SNP and 1 is UKIP.

Not only have 285 MPs been contacted, but 84 of them have been contacted at least twice, 24 MPs three times, 8 MPs four times, 3 MPs (Caroline Lucas, Diane Abbott and Cat Smith) have been contacted at least five times and Paul Blomfield, MP for Sheffield Central has been contacted at least six times. We say at least because we’re aware that despite our best attempts we may have missed some contacts, or not know about them. That’s ok too because once we know who has a spot in the Private Members Bill ballot we’ll ask anyone who has contacted them (or lives in their constituency) to let us know.

So please keep contacting your MPs, if you’ve not had a chance yet please tweet them, email them or write to them. If you have contacted your MP please encourage a friend, family member or colleague to contact theirs. If you’d like a reminder of why the #LBBill is important, you can:

• read Sara’s post on what difference the LBBill would have made to LB here
• read John’s post on why the LBBill is important to him here
• read Steve’s post on why the LBBill covers more than the Care Act

If you’d rather watch a film, you can check out the introduction to the LBBill and where it came from here:

Finally, if you’d like to meet some of the people for whom the #LBBill could make a difference, then check out:

and

Week 10: 1 in 4 MPs contacted re #LBBill, still 75% to go #107days

Wow, what a weekend of #bankholidayactivism. Ever since the #JusticeforLB campaign evolved/emerged/was born (still not sure which of these is most true) we’ve been blown away by the responsiveness of people. This weekend proved no exception and we’re delighted to now share that slightly over 25% of all MPs in Westminster have been contacted about the #LBBill.

Seriously, that’s 1 in 4 who will know about LB, who will hear about his entirely preventable death, and who hopefully will read up on the #LBBill and lend their support to it. The responses from MPs on twitter and email has been overwhelmingly positive, where they’ve had a chance to engage, and let’s be honest MPs are allowed time off too and given it was a bank holiday and the start of half term for most people, we really didn’t expect to have had pretty much any response.

We’re not getting complacent though. As wonderful as it is to see that all MPs in Norfolk and Devon have heard about the #LBBill there are still whole swathes of white on our map where people don’t yet know.

So this is a quick thank you, a mini celebration and a call for further action.

If you are reading this, and you care about disabled people, please take action to contact your own MP and let others know about the Bill and what it proposes. You can read Sara’s post from yesterday for more on what difference the LBBill would have made to LB – short answer is he would probably still be alive today, playing with his footy guys and chatting away to Chunky Stan.

We need to make sure no other family suffer the same loss that LB’s have, that no more disabled people are denied what are essentially very basic human rights. So please take action, we need to give the #LBBill every chance to be heard in Parliament.

Thank you all.

Week 10: LB and the #LBBill #107days

Yesterday’s post has got us off to a fantastic start with telling MPs about the #LBBill, so thanks to all of you for your help with that. Today we’ve a post from Sara reflecting on LB and the #LBBill.

A while back I was asked by a journalist (could have been on BBC Radio but I can’t remember now) if the #LBBill would have made a difference to what happened to LB. I am really not a natural or keen radio or TV interviewee, particularly when it’s to talk about something so horrific, and this question struck me as simply too sad. I fluffed it.

Now it’s time for action with the Bill, it probably is helpful to think through how the proposed changes to the law could have made a difference. [Howl.] First of all, LB should never have been admitted to the unit. If a range of meaningful ‘in-home and community support services’ were available [Clause 1] I don’t think LB would have become so anxious and depressed in the first place. He loved learning to be a mechanic at TRAX. He worked there the day before he died. If there were more opportunities like that and support available to help people access the stuff they want to do (i.e., the stuff that other people just get to do), I’m not sure LB would have got so down. Oxfordshire County Council (OCC) funded support included a 5 day holiday akin to a boot camp with learning outcomes attached to every waking moment that LB hated, and a peer buddy scheme which failed to attract young people and so LB was buddied by someone our age. Simply not good enough.

Once we reached crisis point, Clause 3 would also have prevented LB’s admittance. There was no crisis care. Just a number to call and be told to go to the out of hours GP. The modus operandi, certainly in Oxon but I suspect pretty much everywhere else, is to rely on families to do the graft and when things have escalated way beyond what most people could endure or ever dream of enduring, it’s off to the ATU. Instead of chucking more direct payments (as meaningless as trying to spend drachma in the local pub) and talk of ‘respite at a building with a snooker table’ at families in crisis, the local authority should make sure a suitably trained, experienced, enthusiastic and caring team are on call and available to work with people and their families to try to avoid the need for admittance.

Slightly ironically (and I still don’t really understand this), the commissioners were apparently happy to indefinitely pay £3500 a week for substandard care at STATT. LB had no desire to live anywhere other than home at that point so Clause 2 was less relevant to us.

Clause 4, which is about securing the most appropriate living arrangement, would also have offered LB some protection against what happened. A review of the new ‘living arrangement’ (which we thought was a short term fix) 3 months from the day it commenced would have happened around June 19th. As it was, nothing was done about getting LB out of the unit other than a meeting eventually organised for July 8th (with the pushing of LB’s head teacher despite OCCs grandiose claims to the contrary).

Clause 5 was also less relevant to LB again because he was still at school and should have been living at home. Like most kids do. This clause is very important to those people who are living independently however. Most people have a choice about where they live. It’s astounding really that we’re trying to change the law to protect people from being moved against their wishes.

One of the things #JusticeforLB has achieved is shining a spotlight on the murkiest of practices that continue in health and social care. I was chatting to someone the other day who said they read our posts with a mix of incredulity and horror. That light shining is embedded within the LBBill, particularly in Clause 6 which places a duty on local authorities and the NHS to report annually on all their living arrangement activities (with full disclosure on the when, why and hows involved), and the Secretary of State to summarise these in an annual report. This is bloody brilliant really and I hope, if the Bill becomes law, there is clear and careful scrutiny of this data at both a local and national level. Using lenses with aspiration, imagination and happiness etched in gold around the frames.

Clause 7 involves sensible rewording of the Mental Capacity Act and Clause 8, again sensibly, removes learning disability/autism from the Mental Health Act. Er, because neither are mental health issues. Clause 9 makes sure that despite Clause 8, people can still access mental health services. [I know].

I also love Clause 10 [I love it all really but some bits are stand out stars for me] which is about being open and transparent with the person whose ‘care’ or support this is about. A chewy bit of ‘nothing about us without us’ which is so blinking obvious. Invite people to meetings about them, give them free support to attend, let them respond in whatever form they choose and communicate the decision from the meetings in an accessible form. Bam. As simple as. And shameful it doesn’t already happen often.

LB was only invited to the last 10 minutes of the Care Plan Approach meeting during his 107 days in the unit. He wasn’t told about the weekly meetings or informed of what was said. Despite all the nonsense about making us get his permission to visit him daily, not one member of staff communicated anything meaningful to him about why he was in there. But that was because they didn’t know why he was there and no one bothered to put the support in place to enable him to come home. A situation that would not be possible (or certainly should not be possible) if the law is changed in the way we are proposing.

The Bill finishes with a bit of welly wielding stating how the Bill will be enacted [Clause 11] because there ain’t no point in changing the law if the law ain’t followed. So that’s it. A more coherent answer to the journalist.

And the short version:

“Yes. LB would probably be lying on the floor right now, playing with his footy guys and chattering away to Chunky Stan.”

Please support the #LBBill

Week 7: Ta da….Draft 2 of the #LBBill #107days

Yesterday we shared a post from Mark Neary on the eve of Draft 2 of the #LBBill. Today, on the eve of the 2015 General Election, we unveiled Draft 2 over on the LBBill website. Here, Steve Broach, introduces the changes from the first draft:

It’s been a while coming, but we hope Draft 2 of the #LBBill is worth the wait.

As previously blogged, we have had tonnes of feedback on Draft One of the Bill, by email, on social media and in a number of brilliant face to face meetings and events. We were pleased to see that although lots of people wanted the Bill to go further and do more, there was little if any disagreement at the idea of a new law to protect the rights of disabled people to live in their communities where they choose.

These were the criteria we used to decide what changes we made to Draft 2:

A key theme of the second draft is a stronger focus on enforceable rights rather than general duties. This is most obvious in Clause 1, which now would give disabled people a right to choose where they live unless the Mental Capacity Act or Mental Health Act is used to force a different outcome. We have also made the right on the state to take account of cost and its resources in Clause 4 subject to this duty. This all gives a much stronger focus on the rights contained in Article 19 of the UN Convention on the Rights of Persons with Disabilities.

Another major change is in Clause 8 in relation to the Mental Health Act. There was extensive debate on this, and in the end we felt that the best option was to retain the Mental Health Act as an alternative to disabled people being sent to prison for criminal offences. Clause 8 would still though stop disabled people being ‘sectioned’ under the civil provisions just because they have autism or a learning disability. We welcome more debate and discussion on this key issue.

While we have the MP’s attention with the Bill, we want to take the opportunity to ban the use of ‘secret’ panels to make any decisions about disabled people’s care – this is new Clause 10.

There are a number of other changes, please check out the drafts for more. I particularly like the new clause 3(3), which would require the employment of disabled people in teams responsible for commissioning and planning services.

One of the strongest messages I took from the debate on Draft 1 is how little trust there is now for the state to ‘look after’ disabled people. When disabled people and families were speaking about ‘safeguarding’, they meant protection from the state, not by the state. At its heart this lack of trust comes from an unequal power relationship and the constant threat of state-sanctioned violence, as Chris Hatton has written about recently.

We hope #LBBill can play a part in redressing that balance and promoting proper respect for disabled people’s human rights, like the best public bodies show now. Having considered the new Care Act I’m convinced we need to go further in the ways that Draft 2 of #LBBill suggests to get the kind of legal scheme we need.

Feedback on Draft 2 is very welcome. There can be a Draft 3 if the feedback shows it’s needed. In the meantime as soon as the dust settles on the election we will be asking everyone to lobby their new MP to support the Bill. Even though the No Rights Ignored green paper contains some of the ideas in the Bill it goes nowhere near far enough, so we will still be looking for a backbench MP to adopt the Bill at the Private Members Bill ballot in July.

Week 1: Campaign context #107days

In our last post we re-launched #107days and shared the video that captured some of the wonderful action last year. In this post we wanted to provide some further context for the campaign. The simplest way of doing that is by sharing one key document, the #JusticeforLB Audit Report, and a Newsnight feature, both produced in response to the National Audit Office report into learning disability published at the start of last month.

So, grab a cuppa and have a watch of this, it’s only 5 minutes long, but captures succinctly the last couple of years for LB’s family:

Our Audit Report is called Actually improving care services for people with learning disabilities and challenging behaviour. You can download it by clicking on the cover below, or the link here. The report examined the challenges faced in delivering key commitments of the #JusticeforLB campaign manifesto, the extent to which these have been achieved, and the barriers to achieving JusticeforLB and actually improving care services for people with learning disabilities.

Our headline message was that we believed that the JusticeforLB campaign demonstrates that a considerable amount can be achieved if you strip away layers of tired bureaucracy, hierarchy and vested interests and just get on with it. In a genuinely collective way.

So many of you spontaneously, creatively and magnificently got involved with #107days last year, and we’re extremely grateful for your support. One of the things that we tried to capture in the audit, but would like to understand further, is the impact that the campaign has had. To that end, please share with us what difference the campaign has made for you.