Day 94: Citizen Advocacy and Education Fest #107days

Day 94 is another shared day, this time between Barbara and Gail. They both opted to write blog posts, Barbara’s is featured below, together with extracts from Gail’s although you’ll need to visit her blog for the full piece.

When asked why she was supporting #107days and #JusticeforLB this is what Barbara had to say:

I’m a citizen advocate who is also a teaching assistant on the BA(Hons) Learning Disability Studies course at University of Manchester and a volunteer supporter with their Partnership Steering Group. I first became aware of LB when I stumbled on Sara’s tweets last winter as a novice on Twitter. Shocked by Connor’s death, struck by Sara’s frankness, I was and remain in total admiration of her determination and staying power. I too want to see Justice for LB, justice for all the dudes young and old. The campaign makes me wonder what becomes of abuse victims who don’t have anyone to speak up on their behalf… I believe many people, members of the public, can make a positive difference through citizen advocacy: you don’t have to be an expert to be an abuse watchdog.

Barbara asked to write a blog post for her action, which is reproduced below, Speaking up for Citizen Advocacy.

In this blog I am going to touch on abuse, promote citizen advocacy and question current advocacy trends for learning disabled people. Abuse continues despite numerous reviews and recommendations. The reasons are complex but two issues stand out for me:

1. Bureaucracy, ingrained in service culture, obstructs and takes precedence over the support and care of individuals. Ever expanding, repetitive and often seemingly pointless, it leads to the neglect and abuse of individuals who are supposedly being ‘served’. There would be less abuse if services streamlined all this red tape!

2. Social Devaluation: People make unconscious judgements about others. Negative judgements mean marginalised people like those labelled as learning disabled are considered of less value. This can lead to them being treated badly and abused. Also they may well be denied valued things in life like supportive relationships, respect, love, autonomy and participation in meaningful activity. To combat this social devaluation Wolf Wolfensberger, an American psychologist, promoted the importance of creating, supporting and defending valued social roles for people at risk, social roles like family member, friend, worker, volunteer, artist, cinemagoer, holidaymaker, car owner. Thus vulnerable individuals can gain self-esteem and are likely to be viewed more highly and treated better by others in society (Wolfensberger, 1998). This is how citizen advocacy originated.

Citizen advocates are volunteers who develop long term relationships with vulnerable individuals and speak up on their behalf. The advocate partner is someone at risk of having choices, wishes and decisions ignored, and who needs help in making them known and making sure they are responded to. The citizen advocate also attempts to meet their advocate partner’s expressive needs like emotional support, warmth, commitment, friendship, love. More information about the citizen advocacy partnership is available here.

Over 10 years my advocate partner Gloria (not her real name) and I have built up a close relationship. Like LB, Gloria is fond of public transport and our weekly meets invariably entail a tram or bus trip as well as a bite to eat. I have supported her to be heard and helped realise her wishes to get a car and go on holiday. Gloria has experienced abuse. Often the system is at fault and staff aren’t always aware. Ways I have helped to counteract abuse

• Money spent irresponsibly by past support workers was refunded to Gloria in response to my formal complaint.
• With my instigation, Gloria has received support from familiar support workers during hospital admissions to ensure past experiences of fear and neglect were not repeated.
• The service was obliged to shelve plans to set up a staff office in Gloria’s home due to my protest regarding her tenancy rights. Awareness-raising is an ongoing need, for instance the connecting door with the neighbouring tenancy, keeping it open is convenient for staff but this breaches the tenants’ right to a private life.
• I alerted the CQC who discussed the negative effects of staff shortages and regular use of agency workers with Gloria’s support service. Recent increased permanent staffing will hopefully provide greater stability.

Benefits are reciprocal: I have gained massively too and will always be indebted to Gloria for many things, including my degree.

UK Citizen Advocacy was developed in the 1970s/80s to support individuals being resettled from the long stay institutions, some of those partnerships continue today. The 2001 Valuing People policy offered local authorities funding to set up self-advocacy and citizen advocacy projects. Development of the latter was patchy and the impact unclear and sadly citizen advocacy has gradually receded. This may have been partly due to the difficulty in measuring the effectiveness of this long-term partnership. Time-limited interventions are easier to substantiate and understandably commissioners want to fund evidence-based advocacy. So paid case advocacy has expanded and so have Independent Mental Capacity Advocates (IMCAs) as a result of the Mental Capacity Act. The different types of advocacy – case, IMCA, self, peer, citizen advocacy – all have their value but not at the expense of each other. The long-term benefits of the citizen advocacy partnership are equally if not more valuable in fighting abuse.

With the introduction of the new Care Act local authorities will be duty-bound to provide ‘independent’ advocacy for certain people to ensure they are better involved in the assessment and care/support planning processes and to support them through safeguarding enquiries. This is great but the Learning Disabilities Observatory believe there is a real danger that organisations will only be able to support learning disabled people assessed as ‘eligible’ for advocacy services and advocacy will come to be seen by commissioners as another professional ‘service’ to be delivered. Who is going to speak up for the rest? If services are at fault in the perpetuation of abuse why is advocacy, with its history of campaigning for rights and mission to question service organisations, increasingly joining the service provision fraternity?

Indeed the introduction of the City and Guilds advocacy qualification means advocacy is becoming increasingly professionalised with some contracts expecting organisations to employ qualified staff. Meanwhile recent policies like Building the Big Society 2010 and Learning Disability Good Practice 2013 encourage local volunteering and involvement in social action, capacity building and development of more community-based support. Plus person-centred circles of support are current good practice. To my mind citizen advocacy fits neatly with all of these. Another reason for it to be promoted not neglected.

A citizen advocate is also independent. Although, there is a lack of research into the extent to which independence supports, or otherwise, produce beneficial outcomes according to the School of Social Care Research, many advocacy organisations are not independent. Most are reliant on state funding, some provide care or support services and others share premises, email servers etc. with the services they are supposed to be holding to account. Advocacy organisations which are reliant, either totally or partly on state funding, are in a difficult position to dispute the parameters of their commissioning contracts. Indeed this Tuesday, Patrick Butler in the Guardian claimed charities (most advocacy organisations are) are having to tone down their campaigning for fear of losing state funding. Compromising independence is likely to reduce advocacy organisations’ effectiveness.

On the other hand, their ‘Loose Cannon’ characteristic enables citizen advocates to be more effective. Unlike in the US, due to public dependence on the UK welfare state and the fact it is taken for granted, the importance of independent advocacy is not properly understood or thought necessary by services or the general public according to Wolfensberger. But what we actually need are more independent citizen advocates who are prepared to speak up for people like LB and Gloria. At this crucial time when abuse isn’t going away, I call on commissioners, policy-makers, advocacy organisations, all those with influence to reflect on the current situation of advocacy in this country and promote more voluntary citizen advocacy. I believe many more people, members of the public, can make a positive difference through citizen advocacy. Come and join us!

Gail has this to say about supporting #107days and #JusticeforLB:

I wanted to do something for the #107 days campaign because apart from the collective outrage that has been so evident it’s restored my faith in humanity. The sense of positivity it has produced is infectious, heart warming and gives me some hope that things can and will change in the future.

Sara is one of my dearest friends and I’ve known Connor since he was around 5 or 6 years old. We are part of a group of six close friends who all met when our dudes attended the same academy for crazy little dudes. We call ourselves the ‘life raft’. Our families have all socialised together for years and so obviously our kids all grew up knowing each other well too. Connor’s death shocked and saddened all of us more that I can say and we remain incensed that it was so preventable. I’ve spoken a lot about Connor and Sara on my blog, not least because his death came just 6 weeks after the sudden and unexpected death of my husband Bob and we’ve been coping with grief shit stuff on a similar trajectory. Similar but not the same, because of course Bob’s death was no one else’s fault. As I’ve been trying to deal with my own grief I’ve watched my friend and her family endure the most inhumane treatment by those ultimately responsible for their son’s preventable death. Compounding their grief and making dealing with their loss so much harder.

Although I’ve adopted today I’ve been raising the Justice for LB campaign in all the work I do, both for Dimensions UK as a Family Consultant and Oxfordshire Family Support Network as Transition support coordinator. I’ve raised it in training, in meetings and parent workshops, basically any chance I get to get this story out there. And, I’ll continue to do this long after the #107 days campaign.

Today Gail is speaking at the the Sunday Times Education Festival. A large event covering all things education and special education. You can read Gail’s full post on her blog, but here’s a taster:

There are a lot of high profile speakers and I’m up against David Starkey (and many others) in my time slot, so I’m not sure how many people will come along and listen to me, but it’s a chance to talk about the SEND reforms and the Children and Families Act and what it should mean to families and I was thrilled to be asked. I’m dedicating my talk to Connor and his family.

My main focus is on Person Centred approaches and why without them the SEND reforms are set to fail. The need for this way of working in health, education and social care to become embedded in the systems that surround our children and the need for families to be treated as respected partners, involved throughout.

Gail’s post, and indeed her talk, will discuss person centred approaches and the role that they can, and should, play in ensuring good support for all dudes.

Day 88: A sibling manifesto #107days

Day 88 was adopted by Marianne and her children, Jacob, Izzi and Alex. She was interested in supporting #JusticeforLB and #107days because:

There are clearly many reasons why what happened to Connor is so shocking and horrific and these have been and continue to be highlighted  as part of the 107 days campaign.

One of the things that have affected me the most is the at times almost paralysing fear that this could be my family, this could be my son. I have three young dudes. Jacob, Izzi and Alex. That Jacob and Izzi could be in the same position as Connors brothers and sisters made me ask to contribute to the campaign and to adopt this day as the one for all the brothers and sisters out there.

For their day Marianne was keen that she would spend some time with Jacob and Izzi, discussing Alex’s future. Here’s what they did and why:

When Alex was born 5 years ago and I realised before we even left the delivery room that he had Down syndrome. To be absolutely honest, my first thoughts were not for Alex but for us, his family.  I saw the faces of the parents, brothers and sisters of people with learning disabilities whom I had supported over 15 years. The emotions on their faces weren’t positive ones, weariness, anger, exhaustion, resignation and at times despair. Many of these emotions were deeply engrained, due to years and years of fighting these invisible but all pervading ‘systems’.

For the past 5 years I have been in a space of denial: determined that our story would be different. What happened to Connor has therefore struck deep and stuck hard.

I now alternate between fight and flight in terms of what the future holds for Alex. A recent regular pub meet up with other mums in a similar situation found us ruminating on what will happen when our children grow up, what will happen to their brothers and sisters? The issue isn’t about burdening them with a sibling with a disability, it’s about burdening them with faceless and nameless systems to ensure their brother or sister has the life that makes sense to them. Burdening them with taking on a fight that they haven’t chosen or asked for. Our only answer was for us to become immortal. I know.

Jacob and Izzi’s beliefs and acceptance of their brother have grounded me and continue to be a lesson. Particularly for me, a professional in the learning disability world for longer than I have been a parent of someone who has a learning disability. Their perception of Alex as a brother first and someone with a disability last with heaps of things in between is a constant reminder to me to aim high. When I asked them to describe to me what Alex would be getting up to as an adult, they were quite clear:

• Alex will be a policeman or a driver of an ambulance, This is because he is caring and likes to look after other people
• Alex will go to university
• Alex will have a wife. If their house is bigger than mine, I will probably go and live with them (Izzi’s comment!)

It didn’t occur to them at first that Alex might need some support when he is grown up. When I asked them about this they immediately said that they were the best people to support him as they know and understand him best. If others need to help, then their list of requirements was as follows:

• You have to learn sign language
• Call us if you have a problem
• Don’t forget to record his favourite programmes
• Have a good personality – be lovely and caring
• Make sure you have a goal net – so he can have a good game of football
• There should be a mix of people – some like mum, some like us.

I am conscious in writing this down, that I am not providing any answers or solutions to the fact that a beautiful young man at the start of his adult life has died needlessly and avoidably. When I asked to contribute it was with the thought of giving a shout out to all the brothers and sisters out there, to make sure that their voices are also heard and listened to. I think Jacob and Izzi have got the measure of their brother, they have set out what matters in just a few words and they didn’t use any forms, risk assessments or charts to do so. I know we will get sucked in to the system eventually, I do know that. But for as long as I can, I will stick with Jacob and Izzi’s version of getting it right and help them to shout it loud and clear!

This is my pledge to Connor.

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.

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 can’t 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 83: H&SA and BILD respond #107days

A number of the remaining #107days are shared days, and today is a powerful duo of H&SA and BILD. Alicia, from the Housing and Support Alliance (H&SA) and Ann, from British Institute of Learning Disability (BILD) both got in touch to adopt a day with a real urge to do something to make progress. We are delighted at the actions they have taken and feel confident that they will support real progress towards #JusticeforLB and all dudes.

So, first of all why did they want to get involved with supporting #107days and #JusticeforLB? Alicia, from Housing & Support Alliance had this to say:

H&SA is supporting #JusticeforLB firstly because Connor and his family only wanted something simple and straightforward, to get the help they needed and had a right to in difficult times, and it ended in the most unimaginable tragedy. We know that people with learning disabilities that have the most complicated needs can and do get good help, a good place to live and the support they need to live there. It is doable and affordable yet all over the country there are still many people with learning disabilities and families getting poor and mediocre support, being sent away from the people they love because there is no decent support locally and being needlessly hospitalised when all they need is for professionals to listen and respond. It is an outrage.

and Ann from BILD:

Like so many, we at BILD, the British Institute of Learning Disabilities, were dismayed to hear of the death of Connor Sparrowhawk, yet another young person dying whilst in ‘care’.

We were then shocked, again like many others, when the independent report made it clear that his death would likely not have happened had the right kind of support been in place in the unit where has was staying. We can only imagine the distress of his family and friends knowing that his death was preventable.

So many people with learning disabilities and autism have suffered from the lack of the kind of support they have every right to expect and should have. Too often organisations who are there to provide care and support fail to do so. It is people with learning disabilities and autism, and their families, who pay the greatest price.

Then we saw that the organisers of #107days wanted to harness the outrage that emerged in response to Connor’s death to fuel a campaign aimed at ensuring lasting changes and improvements are made. We wanted to join in.

As you can see they both wanted to help make real change. Alicia and her team are doing this:

To support the #107 days campaign H&SA are going to do something practical to help get people with learning disabilities out of institutions. In the latest Winterbourne View Concordat data it says that are 2358 patients living in ATUs that do not have a transfer date.  There are various reasons given for why most of those people do not have a transfer date. For 165 people it says that the reason they are still there is that there is not suitable housing provision locally.

H&SAs commitment to #107days is to try and find out what the local issues are and offer help to get housing for each of those people. We will do this by:

• Contacting each of the 14 commissioners who have responsibility for moving people on
• Finding out what the local issues are
• Offering support, information and contacts to help all of those people get housing.
• We will publish the responses from commissioners on the #107days site (later today) on the 10th June 2014

Also happening today is BILD’s action and you can follow it and participate on twitter using #BILDepilepsy.

To show our support we decided to organise a free event on 10 June, called, ‘Epilepsy – what matters?’, aimed at front line staff, families and anyone interested in epilepsy and people with learning disabilities and or autism. As well as the sessions taking place in Birmingham, we will also use the web, social media, and BILD’s many members, to help raise awareness of the issues around epilepsy support for young people with learning disabilities and or autism.

We are delighted to say that the event is full and there was a waiting list.

The topics the event will cover are:

• Epilepsy misdiagnosis
• Epilepsy and behaviour
• Describing seizures
• Epilepsy – Isn’t that just seizures?
• Impact of epilepsy on learning and behaviour
• The link between epilepsy and autism

We are very grateful to Pam Morris, Nurse consultant, and Emma Tingley, the National Services Programme Manager for Young Epilepsy, for being our speakers, and to Janet Cobb for helping to organise and promote the event.

Beyond 10 June, we will capture the available information on epilepsy in young people with learning disabilities and or autism and make sure this is available on the BILD website for visitors and those looking for support.

We would like to wish the #107 Days Campaign every success.

You can check out the programme for today below, and join in on twitter. We’d like to thank the Housing & Support Alliance and the British Institute of Learning Disabilities for their actions.

Day 74: Letting the light in #107days

Day 74 was adopted by Fiona, an eLearning designer and video producer from Northern Ireland, who is interested in how we might use technology and media to reduce inequality and injustice. This is what she had to say about why she’s supporting #JusticeforLB and #107days:

A few months ago, a couple of tweets from a lady called Sara Ryan were retweeted in my Twitter timeline. Shocked by what I read, I looked at her profile and made my way to her blog. Two hours later I was still there, reading Sara’s blog. It was fantastically joyous and devastatingly sad in equal measure.

Many years ago, I lost my brother to cancer. He was 13 and I was 15. Unlike Sara’s son, Connor (aka Laughing Boy = LB), there was no incompetence involved in his death. But it was at a time when cancer services for children could at best be described as primitive. When you overhear a GP telling your mum that she’s being selfish when she’s feeling afraid to give her child morphine, you know there is something not quite right.

So, when Sara described trying to push the horrors away so that she can remember the good times with LB, it resonated with me. I was hooked into Sara’s story and wanted to become involved, and help, somehow.

And grief is a strange beast. In the immediate aftermath of a death, it almost protects you – numbness, shock, shutdown, self-preservation, darkness. As time goes on, chinks of light get in. You try to remember what was good about the person and use it to drown out the horrors. For years, I remember not being able to see my brother’s face, then one day, I could.

So today I dedicate this blog to letting the light in. In my own family, they couldn’t talk about my brother – It took them almost 10 years to put a headstone on his grave. His name is rarely mentioned, even now, some 25 years later. I loved how in Sara’s blog, she shared stories of LB, and little snippets of conversation. How Sara is coping with her pain and grief is a true inspiration.

This is what Fiona has to say about #JusticeforLB and all dudes/dudettes:

As well as seeking justice for LB, I love how the #107days campaign is highlighting the general crap provision and support for people with learning disabilities in our society. There are so many inequalities around people with learning disabilities. I continue to be shocked when I read statistics on this, for example – more likely to die younger – on average 16 years sooner than everyone else. If this was any other section of society, there would be people on the streets! You can read more about the inequality research here.

The very people we should be protecting the most in society are often discounted as an ‘inferior species’ not worthy of our full attention.

But improving life for our brothers and sisters with learning disabilities is not all about statistics. It is about all of us. In her blog, Sara talked about people who worked with LB, the Charlie’s Angel story made me smile so much. Sara also talked of how LB’s brothers and sister and their friends seemed to find an easy way of happily being together. If this can happen at a family and local community level, then there is no excuse for wider society getting it wrong.

Nurturing the Potential

We all need help to reach our potential. Sadly, if you have learning disabilities, this doesn’t happen in the way that it should. I’ll leave you with a story from a dude that I know. Eoin is 23 and lives near Derry in Northern Ireland. He tells us about his love of learning about World War II and his work as a volunteer in local events. Eoin is thriving and has had several short work placements in local businesses who have welcomed and supported him. Here’s Eoin…

The video is taking a while to sync within the post, but you can watch it on YouTube here.

We’re grateful to Fiona, and to Eoin, for sharing their experiences with us. Our hope is that everyone will receive the support they need to reach their potential, otherwise, to be blunt we’re talking about lives half lived. Surely we’re past that?

Day 70: Shadows of action #107days

Day 70 was adopted by Yvonne Newbold who wished to write this blog post to share some of her own personal reflections on LB and Sara’s experience, and the similarities to those of her and her son Toby. This is why Yvonne wanted to get involved:

I’ve never met Sara, nor did I ever meet her son, Connor (LB), yet the shock I felt when I first heard about his preventable death is something that will live with me forever, and which has developed into a searing sense of outrage and anger as I watch the NHS handling of this tragedy unfold.

You see, I also have a severely learning disabled son, who also has severe autism, and I also recently had to entrust his care to others due to my own ill health. His name is Toby and he is 20 years old. There is a real sense of ‘this could have been, or one day might be, our story’. I also know what it’s like to be fobbed off, discredited and abandoned by the NHS as Sara has been since LB’s death, because when you are a parent of a different child, these things seem to happen all the time.

Although I have never met Sara, there is an affinity which exists between parents of children with disabilities, an understanding that transcends normal communication, a sense that we each simply ‘get it’ in a way that the so-called expert professionals very rarely do. To me, LB, Sara, Toby and I, along with every family coping with the issues that disability brings, are all part of the same tribe, a family of sorts. What happens to one of us is personal; it hurts all of us.

This is what she has to say:

Something rather insidious has happened to our society in the past couple of decades since LB and Toby were born, and being a parent of a son who is reliant on the Statutory Services, I’ve watched it spread and become acceptable from a front-row seat.

A culture of fear has taken hold among those working within our health, social care and education services, a fear that paralyses them and prevents them from doing the job for which they are paid; which is to protect and support the most vulnerable members of our society. Instead this culture of fear has turned their priorities upside-down. They now seem to do all they can to protect and support themselves and each other, and maintain the reputation of the organisation they work for.

When organisations have their funding and future survival of services tied to the vagaries of abstract key indicator targets to the extent that we have allowed it to happen, there is a huge vested interested to paper over the cracks, bury any mistake that happens, and create systems that cover their backs rather than reach out to help those in most need. When this trend is also happening alongside a society becoming more litigious year on year, the focus becomes even more self-interested.

They have to keep up appearances make everything seem excellent and tickety-boo, with no room to admit that human errors sometime happen. The people who work in these environments are no longer able to make autonomous decisions; we have all seen the growth of the interminable meetings where even the smallest things are now decided by committee. Joint decisions are always watered down and become half-baked shadows of the actions really needed. No one is able to stick their head up over the parapet anymore and say something sensible, because they are all too scared. Using one’s own initiative is frowned upon but how can you truly care for someone in any meaningful way without being allowed to sometimes think on your feet?

No one takes personal responsibility in these organisations anymore because they aren’t allowed to. Meanwhile young people like LB die, because if no one takes personal responsibility, so no one can apply common sense, and it’s also, of course, no one’s actual fault.

The unspoken mantra is ‘cover our backs, cover our backs, cover our backs’. The staff feel compelled to collude with management to hide any weaknesses or failings. Reputation is king. Any weakness or failing that comes to light is minimised, or side-lined or hidden away. Truths are spun and twisted, any insider who tries to speak out is pilloried as a whistle-blower. If failings cannot be neatly filed away, they sometimes find a scapegoat, and publicly pillory them as well. No wonder the staff are so frightened.

The upshot is that staff bring that fear into every encounter with those in their care. The emphasis changes, again to protect themselves. For every few minutes they spend with those they care for, several more minutes must be spent writing down everything that happened during those two minutes, just in case something ever comes back to bite them on the bum sometime in the future. What they write doesn’t always reflect what did actually happen during those two minutes either; it has to be skewed to fit the text-book version of what would sound best.

So all the reports are written, all the boxes are ticked, and they can produce their swanky glossy brochures telling all and sundry how marvellous their service is. Their backs are turned away from those who really matter and meanwhile LB drowns, and countless others continue to be short-changed.

Our young people deserve better, and things must change for the better, too, and fast. The staff who work for these organisations don’t want to work in a culture of fear anymore either. The vast majority care passionately about making lives better, but their hands are tied by fear.

Mistakes happen, we all know that. When they do, parents like Sara deserve the level of respect that can only come from complete honesty, truth, compassion, empathy and sincere apologies. It is the only acceptable way to behave. Particularly in LB’s case, when that mistake was one that had been waiting to happen for far too long.

As Yvonne says in her post, this mistake had been waiting to happen, but not just that, now it has happened LB’s family and friends are left to raise funds to cover legal costs to bring Justice for LB. So, rather than use an image of LB for this post, I’ve used the party tickets, for the party night happening this weekend, Saturday 31 May and there is still time to get tickets and come along, all support gratefully appreciated.

 

Day 68: Get a move on #107days

Day 68 was adopted by Beckie, who has been supporting the #107days campaign since the beginning, instigating the bus drawing and supporting our efforts in many ways. Having been knocked back by her local school, undeterred and determined to bring the message of #JusticeforLB to the next generation she adopted a day to use at her local Messy Church service. Here’s what she had to say:

In 1970, Jim Mansell fought to close Ely hospital. When asked later if he might lack the credentials and experience for this reform he said ‘(that) was actually a question that never occurred to me’. Jim (at 18 years old) was not much older than Connor was when he died.

Although the old style institutions have now gone, there are institutions in disguise dotted around every area of the UK. From what I can see, Assessment and Treatment Units (which don’t always do what it says on the tin) can be wolves in sheep’s clothing. All too often, they neither assess nor treat people. People with learning disabilities are not ill. They don’t need to be in hospital. The rest of the world has moved on since 1970 and we should have many more good options for supporting people in their homes and local areas, even when people are experiencing periods of distress and need some additional support.

When I heard what had happened to Connor and the way that Sara and her family have been treated, I wanted to get involved in this campaign. I was (still am) so angry on their behalf. Today will be spent making patches with family and friends for the Justice for LB quilt. To kick start this off, I asked Kerry and Kat if we could get the children involved at Messy Church. So on Sunday the children of Messy Church spent time making patches for Connor, and Kerry and Kat talked about Connor during the service that followed. Everyone left with a flyer and the knowledge of how to donate to the fighting fund.

This is what Kerry and Kat had to say about why they wanted to get involved: ‘At Messy Church we were made aware of the campaign by one of our Messy Church parents Beckie. We wanted to raise awareness about what happened to Connor and ensure that children and young people, especially those with disabilities and special needs, receive the care they need and deserve. We hope that by getting involved we can not only raise awareness regarding young people with autism and other learning difficulties but also keep the care of the most vulnerable in our society in our thoughts and prayers’.

We have to make this campaign count. It’s time for change. For those behind this campaign, like the young Jim Mansell fighting to close Ely over 40 years ago, it didn’t occur to us not to act. Change is the only option. If not now, when? How many more scandals and deaths do there have to be before we as a society sit up and listen.

The long overdue closure of assessment and treatment units is just the beginning. As a research assistant I have observed some amazing support. But this is the exception rather than the norm. ‘Care’ is not enough. Good quality support should be about enabling people to live an engaged and fulfilling life.

This campaign is for Connor. It’s for all the other dudes and dudettes too. All those in those mini institutions dotted around the country. It’s for the dude with severe and profound disabilities placed in a ‘sensory room’ and left to stare at the walls for 45 minutes, because the staff forgot to turn anything on. It’s for the dude whose only pleasure (watching The Simpsons) was denied to him because the staff decided to dish up dinner just as it started. It’s for the dudes who all said they wanted to go to Spain on holiday and the manager booked to go to Corfu because (and I’m quoting here) ‘They won’t know the difference’.  It’s for all the dudes and dudettes living at Orchard Hill, for when the scandal broke, it was bumped off the news because a Posh Spice got a new haircut. I kid you not, a haircut more important than a person. I have never forgotten you, any of you. It’s time to show that the rest of society has not forgotten you too. It is everyone’s responsibility to act. Enough is enough. The time to act is now. It is unthinkable not to.

One of the joys of managing the #107days blog is getting to pick what each day’s post is called. Today I struggled, there were so many options, it could have related to mess or messy (given the context of the day), it could have been enough is enough (no-one could argue with that), but in the end I went with Get a move on for the double connotations associated with that, Southern Health suggesting in a media interview they’d help Sara to move on, Beckie’s patch above – one of my favourite’s so far, and of course what Beckie’s post fronts up, our seeming inability as a society to really move on in how we support and treat and view people with a learning disability. I toyed with Moving on but we’ve apparently been doing that since Jim’s day. Far too slowly.

Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!

Day 66: Woodcrafting buses #107days

Day 66 was adopted by Sharon, Heather and the Oxford Woodcraft Folk. They shared LB’s story with their young people on an evening a week or so ago, this is what they had to say:

Woodcraft folk is the cooperative children and young people’s movement. In Oxford there are grass roots groups for young people age 3-18+. We are committed to promoting inclusion, respect and social justice.

The young people of East Wind Pioneers (aged 10-13) were moved by the #JusticeforLB campaign and were able to show their compassion and support through these drawings. We hope you enjoy them!

It has been particularly heartening to see the contributions, support and compassion of young people in today’s activity, and yesterday’s from Ohio, and in several other days. We live in hope that they will grow into young adults who live in, and insist on a more fair and equal society, but we really shouldn’t wait and leave it all to them, we need to keep improving it now.

Day 28: Drops of brilliance #107days

Day 28 was adopted by Kara2008, mother to Grenouille, who has a rare genetic rearrangement. Kara explains that she was motivated to get involved with #JusticeforLB because:

We’ve met many wonderful therapists, educators and medical staff since Grenouille was born, and the people who stand out, the ones we will always remember and be grateful to, are those who do their jobs – and then a wee bittie more.  Who take the time to notice that something isn’t quite right, and take still more time to think of a way to help fix the problem. Those little sparkles of flair, kindness, thoughtfulness, sheer brilliance, turn a typically difficult day into a day to celebrate.

When thinking of what to do for #107days a discussion was had on facebook about little acts that make a big difference, and that conversation has grown into today’s #107days challenge:

I’d like to invite dudes with additional needs, or their parents, to share with us the brilliant little things that people have done to help them.  If we can collect at least 107 Drops of Brilliance, then perhaps they will be enough, pooled together, to give everyone a chance to reflect on what good practice really looks like.  You can post your Drops of Brilliance here in the comments of this post, or on the Justice For LB Facebook page.

Kara has kicked off our #107days drops of brilliance with one of her own:

Amongst a myriad of medical conditions, Grenouille has a growth problem which results in a tiny frame and weak muscles. To be able to concentrate and learn, Grenouille needs to sit stably, which means having thighs parallel to the ground and feet flat on the floor. But when we went to school for the first pre-Reception Induction Day, we found that even the minuscule Foundation Stage chairs left Grenouille with legs swinging, and trunk and head wobbling. The classroom staff ransacked the school furniture store for footstools, but none was right, this one was too high, pushing G’s knees up to armpit height; that one was too light and kept skidding skittishly out from under G’s feet; the third was a typist’s swivelling footrest, which was so unstable that it nearly upended G into a toy-bin.

Just then the caretaker came rampaging in, wanting to know who was raiding his furniture store. He swept all the unsuitable footstools away and returned, grumbling, with a selection of telephone directories in various thicknesses, which he arranged and rearranged under Grenouille’s feet until they were just the right height.

When we went back for the second Induction Day, the following week, I expected to see the pile of directories again, but no, Grenouille now had a custom-built foot platform. After we had left on the first day, the caretaker had measured the stack of phone books and, using stout 1.5cm plywood, had made large, shallow, open-bottomed box to the same height, neatly covering the plywood top in an offcut of the classroom carpet. It was perfect – too heavy to slide about, the carpet muffling any noise from G’s feet and providing a non-slip surface.

Of course, eventually, Grenouille did grow, and needed a lower platform. It wasn’t a problem. Without being prompted, the caretaker would turn up with his assorted phone-books at the end of every half-term to do a spot of measuring, and if the platform proved too high, he just sawed a centimetre or two off the bottom over the holidays. Myself, I’d have been reluctant to destroy by half-inches something that I’d made with such care, but the caretaker, by now G’s friend Richard, positively relished the measurable progress that the gradual dismantling of the box represented. At last, all that was left was the top of the plinth, which Richard ceremonially binned to cheers and applause from the entire class once Grenouille had, finally, outgrown it.

So that’s Kara’s and Grenouille’s Drop of Brilliance and we can’t wait to hear your stories of kindness, brilliance, ingenuity, adaptions or special consideration that make your lives easier. Feel free to share a story about a person, or about a particular location or venue, or exceptional service, anything really, but this challenge is all about the positive. We can’t wait to hear what you have to share. If you blog and would prefer to write in more detail please do and post a link in the comments. Thank you.

Thanks to K. Cusick, of Daffodil’s Photo Blog, for the use of the photo in this post. Last words to Kara:

I wanted some brilliant raindrops, and I wanted them on a shamrock, partly because we have been so lucky with people willing to drop brilliance into G’s life, partly because of the heart-shaped leaves, but mostly as a reminder of LB’s love of Ireland.

So please do get sharing your drops of brilliance, and spread the word of this challenge. Thank you.