Week 7: Draft Two #LBBill eve #107days

Week 7 of #107days Take Two is given over to the #LBBill. Today’s post, on the eve of the launch of the second draft of the LB Bill, is a guest post from Mark Neary, the initial instigator of the Bill: 

It feels a long time since that Twitter conversation about turning current practice on its head and bringing in laws that make it much more difficult for the State to wrench people from their homes & leave them languishing in assessment and treatment units.

Since that conversation last summer, the situation of the people at the heart of #LBBill hasn’t improved one iota. More deaths. More people being taken from their homes and moved 100s of miles away. More court judgements exposing the questionable actions of authorities over their use of the Mental Capacity Act. Only today, Josh Wills’ family posted the news that there is going to be another delay in Josh’s return to Cornwall from the unit in Birmingham where he has been kept for the past three years. More families uprooting themselves to be closer to their detained loved ones. More huge assessment and treatment units being built. More inquiries. More reports. More committees/concordats/action groups. More joint statements from Mencap and the Challenging Behaviour Foundation calling for…… what? Pick a day – pick an issue. And more deceit, spin and violence from the organisations trusted with the care of vulnerable people.

What I find most depressing about the lack of action is the oft repeated get out clause from the likes of Norman Lamb, Simon Stevens, all the way down to delegates at conferences that “It’s the culture that needs changing”. If I hear that one more time, I’m going to custard pie the speaker. The Mental Capacity Act is the law. The Deprivation of Liberty Safeguards are the law. The Human Rights Act. I could go on and on. If the State can’t get their culture right, then just apply the sodding law. You can sort your culture out later. Of course, LBBill is another law for the State to ignore, abuse, lose amongst its relentless culture. It is worrying.

But I think there is something very different about #LBBill that gives it a fair chance of succeeding. It has come from the people who are usually ignored when it comes to legislation for the disabled. It has come from the people, their families and their allies. It has an energy that I have never experienced before. It has a heart that is sorely missing in most social care discourse. It has an instinct for the bleeding obvious. It has a humour that cuts right through the usual flim flam. It has more experts by experience than you can shake a stick at. And it has staying power. LBBill ain’t going away.

Too many lives and justice and futures are at stake.

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Week 5: Quilt Correspondence #107days

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This time a year ago, hundreds of people were busy designing and stitching patches for what became the truly amazing Justice Quilt. When it came to sending patches to Janet, Janis, Margaret and Jean many of you added notes, letters and cards and explanations of why you got involved. Amongst scores of apologies for the quality of stitching, several for tardiness and lots of luck for the final jigsaw; love, hope and gratitude were the emergent themes amongst the messages.

This post shares a handful of quotes from the correspondence that accompanied the patches:

Thank you for providing such a positive form of protest for Justice. 

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I love the idea of making the Justice Quilt: it’s a great way to celebrate Connor and to create a way of making a largely digital campaign have a ‘real life’ object. My daughter and I feel proud to have contributed a small part – Claire

Ellie

There but for fortune go you or I. My son has been in several institutions, I have worried about his safety. I am so glad that Connor’s parents have the strength to push for change – Susan

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It’s a bit of a wobbly, hand-sewn one [patch]. I wanted to celebrate those amazing professionals who have skill, compassion and empathy to support young people like LB. #107days included a post ‘Drops of Brilliance‘ that sums it up. We are hugely grateful to those people who offer that support to our family and to our son, Matt. This is for all who go the extra mile, put in all those extra hours, and show with everything that they do, that they respect, value and care about our young people – Jan

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Day 86: Communication and being human #107days

Day 86 of #107days was adopted by Jenny Morris. Jenny blogged early on in the campaign and has also been interviewed by journalists for a number of pieces that relate to LB. Jenny’s expertise and knowledge is very valuable and today she offers a blog post with her thoughts and knowledge on communication.

I’m writing this because LB’s death and the campaign itself demonstrate two really important things: firstly that – at a time when so many aspects of social policy and social attitudes are going rapidly backwards – we need to hang onto what we have learnt in the past about the importance of everyone’s human rights and how to promote them; and secondly that if we really want to bring about positive change we have to do something fundamentally disruptive to existing systems.  If the ‘abject failure’ of the Winterbourne View transfer programme teaches us anything, it is that you can’t change outcomes unless you radically change the systems that are responsible for the problems in the first place.  I’ll come back to this point.

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The campaign is also making a quilt, made up of patches sent in by many different people.  The photo above is the patch I’ve sent and it sums up one important issue I want to highlight.

‘Communication is at the heart of being human’.  Sadly, some people will react to this statement by saying ‘But some people cant communicate and you’re therefore saying they aren’t human’.

Such an attitude goes along with a failure to recognise how people can and do communicate. Communication isn’t restricted to being able to speak, or write, or use sign language. Most importantly, communication isn’t incompatible with significant cognitive impairment or what people call ‘severe learning disabilities’.

Communication is about recognition of a message being conveyed – it is a two way relationship and we should be paying far more attention to the ‘recognition’part of the relationship.  Instead of saying ‘he can’t communicate’, we should be saying ‘I don’t understand how he communicates; I need to do more to understand, acquire more skills and knowledge, talk to people who know him better than I do’.

How many times have you heard someone say (as I heard only a few days ago):  ‘X has severe learning disabilities and can’t communicate at all. She loves swimming and lots of different kinds of music’? My heart sinks when I hear something like this and even more when the speaker then goes on to describe X’s ‘challenging behaviour’.

The statement is both a denial of the human right to communication and – ironically – at the same time it is an unintended recognition that X has in fact communicated very effectively about what makes her happy.

Attitudes like this go along with a failure to focus on ourselves as a recipient of communication, and instead place all the responsibility on the other person.  Such attitudes betray a failure to use and develop our own skills of observation and understanding; and a failure to use the skills and experience of those who know the person best and who understand how and what they communicate.

When I was doing research in the 1990s about the experiences of disabled children and young people living away from their families, it was very common to be told that a young person ‘doesn’t communicate at all’.[1]  We tried very hard to find people who had a different perspective on those whose experiences we wanted to explore, and if we were lucky we found people like the volunteer who came into a residential home once a week to spend time with one young man who we had been told didn’t have any way of communicating:

You have to wait a long time for him to react.  Although if he’s feeling negative about something he soon lets you know – he screams and shouts when he doesn’t like something but it can feel very unfocused because it feels so extreme. It feels as if it’s just coming from inside him but actually when you think about it, it’s usually something outside himself that he’s reacting to…because his negative reactions are so obvious it’s quite difficult to see his positive reactions but they’re there if you really pay attention.

Imagine if everyone ignored you when you spoke or consistently misunderstood what you said.  Imagine if people do things to you, for you, without paying any attention to what you say, to what you want, need or feel. Wouldn’t you ‘scream and shout’?

One of the things I try and do with most of the posts I write is to remind ourselves of what we’ve already learnt, and sometimes achieved, in the past. Many people who have contributed to the debate following both LB’s death and the ongoing failure of the Winterbourne Review Joint Improvement Programme have referred to the important work of those such as Jim Mansell and to, for example, the origins of Person Centred Planning. As Sara Ryan, LB’s mother, has written: ‘We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK’.

Just one of the key lessons from the past was encapsulated by Alison Wertheimer in a book she edited for the the King’s Fund about good practice in developing opportunities for people with learning difficulties.[2]Published in 1996, it included many examples of understanding what people were communicating when they exhibited ‘challenging behaviour’, and how changing environments and activities, addressing health needs, and providing support in different ways reduced and eliminated such difficulties.  Alison wrote:

Contrary to what usually happens, people with challenging behaviour need more rather than fewer choices, and more opportunities to control their lives in terms of what they do, where they spend time and who they are with.

We do actually have some mechanisms which would, as Alison recommended, give people who are locked away in ATUs etc more choices and more opportunities to control their lives. But these are not to be found in the kind of organisations described – in another publication from 20 years ago – as dominated by an Apollo culture[3]:

Apollo was the god of order and rules, and these organisations try to divide up the work into neat and distinct areas, where everyone has a clear defined role. Each role has a job description and a defined area of authority, with clear lines of accountability and hierarchical systems of decision-making.

These organisations cope well with stability but struggle to deal with major change. There is a danger that change will simply be incorporated into the existing structure and have little impact, if cultural and values issues are not explicitly addressed.

This publication was promoting person centred planning and challenging the way support is delivered, but the analysis can be applied in a wider context.  We have systems which result in people entering and remaining in institutional settings because housing isn’t available.  We have systems which create additional support needs because health needs are unrecognised and/or untreated. We have systems which take mechanisms, such as direct payments and personal budgets, intended to increase an individual’s choice and control but which instead apply an Apollo culture of order and rules which undermines self-determination – there are many examples of this but Mark Neary’s experiences are just one.

A clear lesson from the past is that in order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people with learning disabilities to communicate their preferences and experiences. We need something like Chris Hatton’s proposal that control of all the money currently spent on keeping people in ATUs (an average cost of £4,500 per week!) should be given to a ‘ninja task force’ which puts people with learning disabilities and families in charge and works to ‘develop local, individual supports for people moving out of these services’. A key issue will be the availability of housing – though there are lots of good practice examples of how to provide real homes for people with learning difficulties instead of tying money up in institutional provision.

One thing that most of the reports which follow ‘scandals’ in health and social care systems illustrate is that services which deny the fundamental human right of communication create at best ‘challenging behaviour’ and at worst abuse and neglect that can end in death. And this applies as much to, for example, older people as it does to people with learning difficulties.

In order to bring about real change we have to reconstruct systems and services that have as their main motivating force the ability to recognise and act on what an individual communicates about their needs.  It is only by changing who has control over the available resources that we will have any hope of both protecting and promoting the human right of communication and of avoiding the wasteful expenditure on services which all too often fail those whose lives they are supposed to enhance.

[1] Morris, J. 1998. Still Missing? Vol 1: The experience of disabled children and young people living away from their families. The Who Cares? Trust.

[2] Wertheimer, A. ed. 1996. Changing Days: Developing new day opportunities with people who have learning difficulties. The King’s Fund.

[3] Sanderson, H. et al. 1997. People, Plans and Possibilities: Exploring person centred planning. Joseph Rowntree Foundation.

Day 38: Happy Birthday Big Man #107days

Day 38 was adopted by Big Man’s mum, who wished to share a post celebrating some positives, on his 10th birthday. We love positivity at #107days, in fact it’s underpinned nearly everything we’ve done in this campaign so far, so we are delighted to share this post:

What’s wrong with loving buses? Bus lovers of the world unite and celebrate! From the mum of an ex-bus lover (now replaced with a football team that play in red) I salute you LB and hope that you get the justice that you deserve.

On this day, ten years ago, I had a baby. This baby grew into a dude, we call him Big Man.

BM has some very special qualities – like LB, buses were a great love of his from an early age, from bus numbers and time tables he learned to read. Sometimes he would combine this love of buses and reading by reading out loud all the adverts on the bus; “Mum, what’s chlamydia?”

In time BM started nursery school. By this point he had gone off buses and onto dinosaurs and computers. Once we found he had ordered a load of dinosaur stuff the internet and only stopped when he didn’t have a credit card to get through the checkout. We sat back and admired his awesome brain. We told everybody how clever he was.

Not everybody saw his awesomeness like we did though. They had concerns.

The first IEP I threw in the bin.

I thought it was a record of parents evening and everybody had one.

In time he progressed from IEP’s to different pieces of paper. Assessments, meetings, pathways and diagnoses. It was a language I had to learn fast.

Then he got some letters after his name: ASD.

They said he could stay in mainstream school, he should be able to take some GCSE’s.

The BM does maths for fun.

If Minecraft hadn’t already been invented he would have invented it by now.

He loves a glorious football team that play in red; football trivia and FIFA has replaced buses and dinosaurs.

If he doesn’t like you, he will just ignore you. If he loves you he will love you forever without caring who is watching or who knows. He can’t tell a lie. That’s a good thing, right? Not everybody seems to think so. Some people think he needs fixing, working on, improving.

He is very moral, always stands up for the underdog. He is amazing, complex, cuddly and funny. His capacity to eat dad’s pancakes and chips from the chippy is unrivalled.

So many people seem to live in fear of an ‘autism epidemic.’ Having a child with such a label is portrayed as disastrous, burdensome, tragic. What is this ‘normal’ people seem to aspire to? Is it being the same as everybody else? Is it judging people to be less worthy because of being different? We’ll pass on that thanks.

IEPs are tragic, children aren’t.

Happy Birthday Big Man.

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Day 12: Spreading the word to Healthwatch #107days

Day 12 has been adopted by Beth Gregson who is focusing on bringing #JusticeforLB to the attention of Healthwatch. Here’s why:

As chair of a Healthwatch I am constantly trying to work out what we focus on, there is so much work to do it can feel overwhelming. Do we focus solely on the concerns raised with us by local residents, or do we align our work with local strategies?

The problem with either of those ideas is that people with learning disabilities are often the least heard and are rarely asked, we are very unlikely to hear about concerns unless we actively go out and ask. It’s a bit chicken and egg. Which is why I feel so strongly that healthwatch, as a national network, has a role to play in asking what is happening to our young dudes and what would a national picture look like?

Beth believes that members of Healthwatch are in a unique position, as our role is to champion consumer voice, to gather views and articulate them. Therefore the question of what does good look like, needs addressing.

I am passionate about working towards real co-production of services, and reading the story of LB it hit me hard, both as a mum and a Chair. I asked myself what I could do. Today I am attending a national chairs meeting. While there is no set agenda, I plan to have a conversation, to suggest we respond to the #JusticeforLB manifesto and also to Lord Hardie’s report on Deprivation of Liberty Safeguards and the Mental Capacity Act.

As a national network, I think we have a responsibility to respond to a report like that. To find out about peoples lives, gather the lived expereinces so we can add to the picture and use it both locally and nationally to influence policy.

Beth hopes to raise the profile of what is happening in terms of support for people with learning disabilities with her fellow chairs from across the country. This awareness raising, and bringing the issue to the front of people’s minds, is key to the #107days campaign. Last word goes to Beth, and could be equally asked of many of us as we go about our daily business:

What are we here for if it is not to speak up for those who are rarely listened to? It is not simply about giving people a voice, it’s about supporting others to listen to what’s being said.

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