Remembering

entrance to cemetery, part of now closed Leavesden Hospital

As the truth emerges about the number of deaths in care homes as a consequence of Corona Virus – up to 70% of the total in some countries, and currently estimated as more than half the total Scotland – it is time to think about remembering.

Quite rightly, we held a two minute silence for all the health and care workers who died during the Corona virus epidemic. But what about the victims.

Hidden in the ‘care home’ totals are those people with learning disabilities who never made it to hospital. No idea how many, or if anyone is counting. But I do know that Do Not Resucitate notices were banged on people’s notes without consultation, even though it went against guidelines. How many, I wonder, were thought not worth sending to hospitals. As the EXCEL Centre Nightingale ward stood empty, so, behing closed doors overworked, underpaid and unprotected staff strove to staunch the epidemic.

Some lives are worth less than others.

We must never forget. But unfortunately we do forget. In Germany there are memorials to the disabled people who died at the hands of the Nazis, but although eugenic practices have flourished here too, there are no memorials. The large mental handicap hospitals, designed to stop people ‘breeding’ have disappeared. Most have left no trace, unless listed. Those have become luxury apartments, their previous inhabitants airbrushed from the landscape.

They were places of death. Epidemics stalked the wards as the Corona epidemic stalks our care homes today. Spanish flu, Tuberculosis, measles. Overworked under appreciated care staff struggled to keep people safe in poorly heated wards. ‘Accidents’, stronger patients pushing and punching weaker ones, carelessness, brutal nurses, falling in ponds, ingesting poison, failure to treat all contributed to lives that were too often nasty brutish and short. Evidence from one enrolled nurse (equivalent to Health Care Assistant today) that she had 60 patients in her care overnight, 7 died in 2 winter months, none investigated. Cover ups, compliant police, uninquisitive coroners.

Do we remember? No.

It still happens today. Thankfully it is harder to keep things hidden. Sustained efforts led by family members mean we in the UK know a lot more about these premature – and sometimes preventable – deaths than we ever did. It is not a pretty picture.

Connor Sparrowhawk died in a bath in an NHS Unit in 2013 because his epilepsy was not taken seriously. He was 18 at the time. If Sara Ryan, his mother, had not pursued her son’s death with great energy, it would have been recorded as ‘natural causes’, not the ‘neglect’ verdict reached by the Coroner (Ryan 2019).

Oliver McGowan, like Connor aged 18, died because he was administered drugs to which he was allergic, his pleas and those of his family not to administer these drugs ignored. Stephanie Bincliffe died in 2016 after spending 7 years in a padded cell, during which she gained 10 stone in weight. She was 25 at the time. Joe Ulleri entered hospital with a broken bone, a stay that ended, 3 weeks later, with his death from pneumonia and malnutrition.

These horrendous examples gave rise to a official reports, and recommendations, including a requirement to investigate premature deaths (CQC 2016), and a national initiative to investigate premature death (LEDER 2018).

We also know, thanks to a series of Reports from England, that people with learning disabilities die on average at least 20 years earlier than the average for the population as a whole – and that, unusually – women die earlier than men.

It is not inevitable that people with learning disabilities die early. It is time to start remembering. Remembering the deaths, the foreshortened lives. If we don’t learn from the past, we will definitely repeat it.

Paid work for people with learning disabilities – insights from Japan

In 2019 I was part of an exchange between Japan and England funded by the Economic and Social Research Council. The purpose was to explore how to foster belonging and inclusion, to learn from one another. We set up two inclusive teams, one in Japan, and one in England. Both included a self advocate and at least one family carer, alongside 3 academics. In September our Japanese colleagues came to England to find out about services, as well as take part in seminars and do a little sightseeing. In October we flew to Osaka, Japan’s second city, for a similar intense learning programme interspersed with fine food and cultural experiences.

The exchange set me thinking about the strengths and weaknesses of two different approaches to supporting good lives for people with learning disabilities.

Paid employment has been an aspiration for people with learning disabilities in UK for as long as I can remember. In Japan, 20% of people work in the regular labour market. Compare that to 6% here. We visited two amazing businesses which employ people with learning disabilities, one as artists, the other baking and serving in coffee shops. Others work in what our colleagues called the ‘welfare labour market’, sheltered workshops. And we certainly saw some really impressive examples of people being prepared for, and supported at, work. So on the face of it, prospects for employment are much better.

However, this comes at a price. Long hours, mostly humble employment. Employment protection does not extend to the welfare employment sector, so no minimum wage, or restriction on working hours. And the long hours leave people with little time or energy for other activities, like self advocacy. I take it for granted that we can invite self advocates to events which take place in the working day. Not so in Japan. Self advocacy has to happen after work, if it happens at all.

There has been some discussion here of suspending minimum wage legislation for people with learning disabilities. Japan sheds an interesting light. There minimum wage legislation does not apply. People with learning disabilities in regular employment earn on average 1,404,000 yen (£10,600) per annum, compared to an average of 4,400,000 (£32,280) for employees without disabilities. In the welfare market wages range from as little as 210 yen per hour (£1.54) to a maximum of 850 (£6.24). As our Japanese colleague put it, this is far from decent.

However, there are plenty of people with learning disabilities here who work for nothing or very little, to escape benefit jeopardy or in the guise of work experience or internships. The difference is that Japan is open about it, and actually counts who is doing what for what reward,

Regarding wider finances for people with learning disabilities, here Japan’s approach appears more sensible than in assessment obsessed UK. People get a pension, either Grade 1 81,000 yen (£600) per month, or Grade 2 65,000 yen (£480) per month. Whilst this is not wildly generous, it is stable, does not require frequent stressful (for the person) and costly (for the system) assessments and reassessments, and means people can afford a home, heating and food. Until a single person’s income reaches 3,604,000 yen (£26,500) per annum, there is no loss of pension. So no disincentive to work.

In Japan paid employment for people with learning disabilities is far more achievable than in UK.  We met several people who are incredibly proud of their jobs, some who refused to stop to talk with us because they have a job to do. There is a differential in wages, but not so very different to here, though more overt.

What was missing in Japan was those employment opportunities developed through self advocacy. Easy Read, training, experts by experience, inspections, inclusive research, all of which value the person for the insights their disability offers. Here it seemed our Japanese colleagues had something important to learn from us on the employment front. They were mightily impressed with the work of My Life My Choice, and of Yellow Submarine, both in Oxford.

So where has this left me? As with all the best learning experiences, it didn’t give ready answers, just a lot of new questions about how best to help people achieve a good life. It did tell me something I have suspected for some time, there are no easy answers.

Poor Health and early death – What is Going ON?

In the week we celebrate Learning Disability Pride, I’m wondering why so many people with learning disabilities die too early.

The twenty first century has seen lots of reports on the way the health system treats people with learning disabilities, far less action, and still far too many people dying when they shouldn’t. What’s going on?

First the Reports. Here’s the list.

Year Key milestones critical of mainstream health care
2001 Valuing People White Paper

Government recognised that health care needs of people with learning disabilities often unmet and pledged to ‘ensure that people with learning disabilities have the same right of access to mainstream health services as the rest of the population.’

2004 Treat me right!

Mencap report highlighted inequalities in healthcare for people with learning disabilities.

2006 Equal treatment: Closing the gap[1]

Disability Rights Commission highlighted unacceptable levels of healthcare, leading in some instances to early death, received by people with learning disabilities.

2007 Death by Indifference

Mencap report on six people’s premature deaths, linked to systemic NHS failings.

2008 The Michael Report[2]

An independent inquiry set up in response to Death by Indifference. Stated that people with learning disabilities have ‘significantly worse health than others’. Critical of NHS treatment of people with learning disabilities. Recommended: a Public Health Observatory focused on their health of people with learning disabilities; Annual GP Health Checks; a Confidential Inquiry investigating their premature deaths.

2009 Valuing People Now

Government White paper expressed continuing concerns about the health of people with learning disabilities, stating that their ‘access to the NHS is often poor’.

2010 Improving Health and Lives Learning Disabilities Observatory

Set up to monitor both the health and healthcare of people with learning disabilities; absorbed into Public Health England in 2018.

2012 Death by Indifference: 74 deaths and counting: A progress report 5 years on.

Mencap report on continuing NHS failings, resulting particularly in premature deaths.

2013 Report of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD)[3]

A three year investigation exposed widespread critical failings of NHS healthcare provision towards people with learning difficulties.

2015 Mazars Report[4]

Documented a failure to investigate ‘unexpected deaths’ of people with learning disabilities in a large NHS Trust

2016 Care Quality Commission: Learning, candour and accountability [5]

Reported that failure to investigate ‘unexpected deaths’ was widespread in NHS

2017           Learning Disabilities Mortality Review

Sets out to learn from premature deaths and transfer the learning to other settings

2018 Learning Disabilities Mortality Review Report (LEDER) 2016/7 found that 58 was the average age of death[6]
2019  

Although there were beacons of excellent practice cited in many of these reports, broadly speaking, the findings were:

The health care offered to many people with learning disabilities is of unacceptably poor quality

People on average die over 20 years earlier than other people – average age of death reckoned in 2018 to be 58.

Many premature deaths are not investigated as they should be.

Factors which appear to contribute to these appalling outcomes were identified as:

  • Poor communication.
  • Failure to heed family members and others who know the person well
  • Failure to adjust systems and communications methods to take account of poor literacy, lack of access to transport and other disadvantages experienced by people with learning disabilities
  • Failure to take notice of documentation, like health passports, which seek to explain the person’s healthcare needs
  • Inadequate training of health professionals

Although not spelt out in so many words, there are hints that the attitudes of many professionals are that the lives of people with learning disabilities do not much matter. How else to explain the comment ‘of course we won’t operate if she deteriorates’ made by the charming registrar to my friend recently, regarding his sister with Downs Syndrome?

Much hand wringing, then, but far less action, and that has been relatively ineffective. Annual Health checks were introduced in response to the 2008 Report by Sir Jonathan Michael. The latest figures show that only about 50 % of those who should get them do get them. Furthermore, these checks are often cursory according to people with learning disabilities I’ve spoken to.

Liaison nurses in hospitals – but only some hospitals and only some of the time.

The Learning Disabilities Observatory – did great work, but now dismantled.

Commitments to mandatory training in learning disabilities and autism following the tragic and unnecessary death of young Oliver McGowan – now bogged down in procedural issues.

Health Passports – but too often ignored.

Too little, too late, no sense of urgency despite the heroic efforts of families and journalists. Is this just another symptom of the decline of the British state. Or is there more to it?

As a historian, I look back. What is striking is that, disappointing as is the response, for the first time a spotlight has been shone on these failings. This is unprecedented. Abuse, yes, that was called out in official reports into Ely, Farleigh Backwell, South Ockendon, Normansfield and many other learning disability hospitals in the 1960s and 1970s. But premature death, although I strongly suspect it was widespread, was never the subject of investigation. Put Away, Pauline Morris’s forensic examination of learning disability hospitals published in 1969 makes no mention. A note in the official Ely inquiry (1967) to the effect that the very sudden death of a young adult patient was not investigated was never followed up.

I recall my own acceptance that people with learning disabilities just die earlier than the rest of us, for some unspecified reason associated with the impairment. Diagnostic overshadowing in my own head.

I can’t help thinking that we are skirting a very unpleasant eugenic iceberg here, that some lives matter less than others. Practice around abortion is the example I’ll use.

A woman’s right to choose whether to continue with her pregnancy is accepted within mainstream opinion and law, even if there are those who for religious or personal reasons do not wish to apply it to themselves. Most people in Britain would not argue with it.

However, if the only reason to terminate a pregnancy is because the foetus has been diagnosed disabled, this raises ethical issues that are too frequently avoided.

In any individual case, for a set of reasons, a woman might decide to terminate – e.g. the baby born at term would have a condition that would cause it great suffering. The critical point is that widespread and unquestioning acceptance of termination because an impairment has been detected runs the risk of contributing to the devaluing of disabled lives generally.  In utero, a Downs foetus can be terminated just because it is Downs, despite proclamations of equal rights in policy documents and UN Convention.

My point here is that abortion of disabled foetuses without question lends itself to the view that giving birth to a disabled child is a tragedy, and the family deserving of pity (though not the resources needed to make their lives meaningful and enjoyable). A sign that, whatever the rhetoric, these are people whose lives are less valued. Does this help explain the readiness of some doctors to make Do Not Resuscitate decisions when a person with a learning disability is the patient?

The late Wolf Wolfensberger, American architect of normalisation and social role valorisation, argued back in the 1980s that learning disabilities services are ‘death-making’, and that the slippery eugenic slope began with the abortion of disabled foetuses. At the time, I dismissed this as fantasy. Now I’m not so sure.

Why raise such a disturbing subject? Until we name the enemy, we are boxing shadows, putting faith in training and communication, when a more deep rooted debate about reversing the widespread devaluing of people with learning disabilities is what we need.

My heartfelt thanks to Clare Palmer and Sam Clark for invaluable comments on this Blog.

[1] Disability Rights Commission (2006). Equal treatment: Closing the Gap. A formal investigation into the physical health inequalities experienced by people with learning disabilities and/or mental health problems.

[2] Michael, J. (2008) op. cit.

[3] Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., Russ, L. (2013) Confidential Inquiry into the premature deaths of people with learning disabilities. Improving Health and Lives: Confidential Enquiry; University of Bristol; Department of Health.   http://www.bris.ac.uk/cipold/

[4] Mazars (2015) Independent Review of deaths of people with learning disabilities or mental health problems in contact with Southern Health NHS Foundation Trust April 2011- March 2014 available on https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf

[5] Care Quality Commission (CQC) (December 2016) ‘Learning, candor and accountability: a review of the way NHS trusts review and investigate the deaths of patients in England’. London CQC

[6] http://www.bristol.ac.uk/sps/news/2018/leder-report.html

I’m writing this blog to introduce our new edited book Transnational Perspectives on the History of Learning / Intellectual Disabilities in the twentieth century. Click on this link to see the rather striking cover Intellectual_Disabilities_v3[10106].

Co-edited by me, and the brilliant Simon Jarrett, it contains chapters from authors in 12 different countries, as varied as USA and Taiwan, Australia and Ghana. All use life stories to illustrate the real life impact of different policies and practices on people.

Until this book, only the Anglosphere, Scandinavia and German speaking countries had even a tiny history industry. The history of learning disability, much neglected even in the west, had barely a flicker of life elsewhere. Use of life stories as a means of understanding the experiences of people with learning disabilities and their families, well established in USA, UK, Canada and Australasia for 50 years, was quite new to authors in other parts of the world. It’s been gratifying that the task of writing for this book has prompted 2 contributors to do more work on life stories in their own countries.

It’s been an amazing experience to edit this book. Exciting to discover that in interwar Czechoslovakia there were incredibly progressive policies. That in the Communist bloc, people with mild learning disabilities were welcomed as equal citizens, part of the workforce, but those who were not able to be productively employed were held in abysmal conditions. To learn that in both Hong Kong and in the UK the 1990s saw a high point of progressive, optimistic policies, with a falling back, both in resources allocated and in vision of a better life, in the twenty first century.

What has been strange and sad is the discovery that across cultures, people with intellectual disabilities tend to be excluded and looked down upon. This cannot always be blamed on eugenics, though that was incredibly influential in Europe, USA and Australasia. A combination of economic anxieties intertwined with traditional belief systems were powerful influences in both Taiwan and Ghana.

More positively, in every chapter, the importance of families. In several countries – Taiwan, Ghana, Hong Kong – learning disability was largely left to families until the closing years of the twentieth century. In Greece and Hungary this was true into the mid century. Even in those countries most influenced by the USA – UK, Australia, New Zealand – families have remained the bedrock of support. And, more striking still, it has been that everywhere families have been at the forefront of agitation for a better life, closure of institutions, support for lives in the community. In some places at some times it took a great deal of courage to stand up for a disabled child, not only in Nazi dominated Austria, but also in Czechoslovakia, Taiwan and Hong Kong.

The language issue loomed large for us as editors. In Ghana, because disability was largely managed within families and rural communities, learning disability lacked a name until recently.  In Hungarian and Mandarin Chinese the preferred ‘people first’ construction ‘people with a …’ is just not possible. In Ghana, people with Downs are labelled as ‘nsuoba’, meaning spirit or water children. Does language matter so much? It’s pretty difficult to research the history of learning disability without labels. A feeble reason to have them, maybe. And there are neo-colonial overtones to the debates about language, with terms regarded as ‘progressive’ usually originating in English or German speaking counties.

This brings me onto the United Nations Convention on the Rights of People with Disabilities. This highly aspirational document is hard to square with the very varied sets of assumptions about learning disabilities revealed by the collection of chapters in the book. Is it, I wonder, an imposition of Western assumptions onto the world. Not the first time, it’s happened.

This is, we hope, not the last word on transnational histories, rather a tentative beginning. Missing are some really important narratives, from China, India, South America, Russia, Central Asia, not to mention places much nearer home, like Ireland, France, Spain. It really matters that we recognise the different experiences of people with learning disabilities and their families over time. If you don’t know where you have been, it is hard to chart a course for the future. Certainly we have learnt a lot from editing this book. We’re very proud of it, and the fantastic authors who made it possible.

The book is not cheap – regrettably. £75. It’s also an ebook available on kindle for £26.99. Policy Press is the publisher, AND we have a 20% discount currently. Use this link to get it.

policy.bristoluniversitypress.co.uk/intellectual-disability-in-the-twentieth-century

One Voice? Or Many?

In the past week there was energetic debate between Simone Aspis and family advocates about who should speak for people with learning disabilities. It prompted me to write this.

I wrote back in 2016, at the launch of Learning Disability England, that families and self advocates should stand together, that they have far more in common than divides them, and that the need for a loud and united voice to fight for a better life for people with learning disabilities and their families was urgent. That need has not gone away.

I believe even more that we should be seeking for opportunities for self advocates and family members to stand together, having had lengthy discussions with the mother of a woman with severe and profound learning disabilities for whom self advocacy is but a dream. That mother’s argument that if she does not speak up for her daughter, no one will, is extremely powerful. It prompted me to reflect on my own experience of self advocacy, and the published literature, to reflect on the extent to which self advocacy includes people with more sever and profound learning disabilities, those, quite literally, without a voice. Whether it’s for lack of imagination, resources or motivation there is very little evidence that self advocacy groups have made space for people with profound and multiple learning disabilities. Jackie Downer, a veteran of self advocacy in England, once explained it to me like this:

I’m so used to saying ‘my needs’, tough luck about the others. They’re somewhere else. It can work but it takes time, and we, as people with learning difficulties, we got no time.

She makes a fair point – self advocates have enough on their plates. All the more reason then to abandon tired old arguments about who has the right to speak. Instead, we could use the energy released to work out ways for self advocates to share platforms with family advocates to take the fight where it is really needed – for resources and commitment from those in power to ensure that a good life is there for everyone.

Time to start a New Social Movement?

 

We need a New Social Movement to fight for a better life for people with learning disabilities. I’ve been at two events this week which lead me to that conclusion.

On Monday I was at the Symposium associated with MadHouse ReExit, the fabulous Access All Areas immersive theatre performance at Shoreditch Town Hall (read about it and book tickets here ). An upbeat event, asking a serious question – Has institutionalisation of people with learning disabilities ended? Answer – No. Not just because of the 3000 or so people locked in Secure Units but because control has been replaced by neglect. False notions of independence accompanied by austerity mean neglect. People are trapped, not nowadays by four walls, charge nurses and keys, but by lack of opportunity, lack of support, by loneliness, and boredom. 

We encouraged everyone who came to sign up to our Manifesto BELONG #LDBelong, to pledge what they can do to support BELONG. One of my pledges was to write this BLOG.

IMG_1482 - Copy

Today was different. I was with #Justice for LB at Oxford Crown Court to hear the Health and Safety Executive case against Southern Health Foundation Trust. Connor Sparrowhawk died almost 5 years ago. In an institution. An NHS institution. Where the ‘care’ was a disgrace. The other side of the has institutionalisation ended question. No it has not, and in this case incarceration led to death. We all know Connor is not alone in suffering and dying in a twenty-first century institution in what we still delude ourselves into believing is a civilised nation.IMG_1497

Taken together, these two events, the upbeat Symposium and the grindingly sad events at Oxford Crown Court say to me we need to take some collective action. Forget the petty rivalries, differences past slights and grievances, this is too big a challenge to divide us.

One of the speakers on Monday was David Towell. David wrote An Ordinary Life in 1980. It provided the vision for the UK’s brand of closing the hospitals. An ordinary house in an ordinary street. Not a lot to ask, but revolutionary at the time. David worked at the Kings Fund then. I fell to thinking how

 

the King’s Fund played a very important role in the original deinstitutionalisation movement under David and Andrea Whittaker’s influence. It stood above the fray. It wasn’t Mencap, it wasn’t Govt. It wasn’t professionals but it brought them together, respected by both health and social work sides. It forged a vision (Ordinary Life) and it gave people somewhere to meet. It also, as I recall, had modest amounts of money for things like lunches and travel costs. So that when I entered the field in the mid 1980s Ordinary Life was the only game in town. Nobody but backwoodspeople supported institutions. The reformers had achieved ideological hegemony (thanks Nigel Ingham).

I do believe that once more we need to focus on getting everyone behind a new version of an Ordinary Life, a new vision to unite us, a New Social Movement. Mabel Cooper, self advocate and campaigner who, although she died in 2013, lives on through inspiring Madhouse ReExit would I know agree. If you agree with me, get in touch – please. And sign up to #LDBELONG

Mabel Hon degree 2010

Children who are ‘too complex for the system’ – the All Party Parliamentary Group on children with a learning disability and challenging behaviour

I went to this joint meeting of the All Party Parliamentary Groups on Learning Disability and Children on Monday. For those who have never been to an APPG, they are rather odd occasions. It is never clear who has been invited, and why, and who is in the room, unless you see faces you recognise.

This APPG was chaired by Mark Harper, MP for the Forest of Dean. I found nothing on his website to indicate how he has come to chair the APPG or why he is interested in Learning Disability. He did not explain but was a competent and empathetic chair, the meeting was well run.

It was a meeting of 2 halves. On one side, the great and the good, debating the challenges of treating these young people with compassion and dignity, in a way that supports rather than undermines them and their families. This is where the quotation of the day came – ‘Children who are too complex for the system’. More facts, distressing facts. Despite Transforming Care the numbers of children being detained is increasing (we think – data is flaky). £500 million a year to keep a small number of children in institutions. Lots of money  being spent on the wrong solution. Clinicians feeling powerless – one, a nurse, wept as she told her story of failure. Families encounter a system wall. Education, health, social care pass the buck, not our problem, not ours, not ours. No one talks about reform, we are lost in medicalisation, the default is inaction, no one takes the lead. MPs can help, bang heads together. But no system that relies on MPs having the time, know how and inclination is worthy of the name.

And then, unforgettably there were the families, bravely telling their stories. It’s not the first time I have heard them. It is not the first time they have been told. The stories cut through the crap. Each retelling brings tears and anger, frustration and indignation. But how many more times do they need to be told?

John’s son aged 13, has an autism diagnosis, and behaviours that challenged his school (though not his family). He was spending what John thought was his last weekend at his home before going off to residential school. Then John received a phone call. ‘Don’t bother, he won’t be going away to school. We’ve sectioned him. Don’t care what the law says, it is done’. No hospital or ATU place could be found. He was returned to the care of his family, still sectioned. Covered in bruises. Police said, ‘your son’s non verbal, cannot do anything about it’.

The Local Authority cancelled the boarding school place, without consultation. No education was provided whilst he lived at home, despite the law, and despite requests from John. Finally, no thanks to the Local Authority, the original school place was reinstated. He is there now, we are told he is thriving.

Then Leo. Leo’s son, Stephen has spent 5 years locked in a secure unit. He is on 8 anti-psychotic medicines daily. He has been injured. No action has been taken. There was a plan to release him, a place was found, builders started work. Then the Responsible Clinician changed his mind. The CCG stopped paying the builders. He no longer has a release date.

The law is not defending disabled people. We heard this message again and again. Not defending their rights to care, support, dignity, but also not defending their safety, failing to challenge criminal behaviour. If it were racially motivated or homophobic, action would be taken. But disabled people, it seems, do not count, do not matter.

Is there a solution? We know what the solutions are, have known for years and years. Support families, before they scream for help. Be there, be ready to help, be flexible. Recognise that when you put someone in a distressing situation, you will get a distressed reaction. Institutions are the problem, not the solution. The problem is getting people to remember that, to act on it.

How to make it happen? The APPG felt helpless and hopeless. The law is there, but not being implemented. The Human Rights Act, and the UN Convention are ignored. Leadership is lacking at both local and national level. No one owns the problem. Perverse incentives operate – all the time the NHS pays, Local Authorities don’t have to. And the NHS pays for institutional ‘care’.

Letters will be written from the APPG to the relevant ministers. Answers will be sought. In the meantime, those children are still being locked up, knocked about, dehumanised. For how much longer?

 

200,000 Applications for Deprivation of Liberty Safeguards in One Year. What is going on?

I was prompted to write this Blog by this information for which I am indebted to an as yet unpublished paper written by

Lucy Series

In2015-16 local authorities in England received almost 200,000 applications for authorisation to deprive a person of their liberty.

She points out that this is more than three times as many detentions as under the Mental Health Act 1983 in the same year and more people than were detained at the height of the asylum era.

And then I was alerted by the inimitable Mark Neary to the extension of these Deprivation of Liberty Safeguards (DOLS) to people living in their own homes:

Steven Neary has had his first Community DoLS and it has been decided that he is being deprived of his liberty in his own home. To quote, “his care and support (1:1 in the home, 2:1 outside) amounts to a deprivation of his liberty”. The fact that he needs a support worker to accompany him when he takes some cake across the road to his uncle is now reframed from the support worker’s presence enabling Steven’s liberty to depriving him of it. This is likely to be the case across the country for every learning disabled person who needs support to live their life.

Neary 2017

What on earth is going on?

We appear to be living at a time when people with learning disabilities (and their families) are either neglected, left to manage in a travesty of a commitment to ‘independence’; or ever more regulated and controlled, subject to incarceration in secure facilities, or surveillance in their own homes.

Being a historian, I turned to the past to try to understand this phenomenon. Surveillance of families is not new. In the 1920s and 1930s, in the era of the now despised Mental Deficiency Act (1913), people who had been ascertained to be ‘defective’ were either taken into institutions, or left in their homes, with quarterly visits from Visitors appointed by and answerable to the Local Authority’s Mental Deficiency Committee. The Visitors reported on their charges. The purpose was explicitly to ensure that ‘defectives’ could not produce children. The Form they were required to complete included this question:

Is it considered that the control available would suffice to prevent the defective from procreating children?

(Model form enclosed with circular letter from Board of Control No. 717, dated January 1929).

If the answer to this question was negative the Committee would take steps to find an institutional place. But if the control was deemed to be adequate, ‘defectives’ were in most areas left to manage as best they could with the help of their families. Occasionally some financial or practical assistance was provided, to pay for dentistry, medical procedures, or even some tuition.

It was in many respects like the situation today. The control /neglect dichotomy is one of history’s great continuities. The contrast is striking: between 1 set of policies that seem to introduce and enforce draconian controls; and other policies that allow/encourage the neglect we know so many people, like Lee Irving[1], suffer. DoLs can regulate every aspect of your life – your home, if you are Steven Neary, is most definitely NOT your castle. But if you are trying to live independently and suffer harassment from neighbours or drug dealers move into your accommodation there is very little help available. If you are a caring family, doing your very best to support a disabled family member, and you ask for some help, as did Sara Ryan, all you get is an institutional place – and in this case with absolutely tragic consequences. One might also suggest that the situation in the 1930s actually offered more support – there are no quarterly visits now to people managing on their own, no little bits of financial help.

 

Ok, we historians are good at pointing out continuities. But we are not usually as good at suggesting answers. I’m going to have a go.

 

My first message is that there is no one size fits all policy solution.

 

Since 1913, there have been broadly 3 policy eras. The first was the institutional solution. This was a response both to eugenic fears – that the ‘feeble-minded’ were reproducing at a faster rate than more intelligent people and must be stopped – but also to stories of neglect and abuse, of people left in workhouses or mental asylums who would benefit from specialist institutions.

The second, starting in the 1970s after the extent of abuse and sheer misery in NHS run institutions was exposed (not note, through regulators but through investigative journalism), was ‘community care’. Although its meanings mutated over time, and according to who was speaking, broadly speaking community care meant building and running both residential homes and day centres to house and give occupation to adults with learning disabilities.

And the third, which really took off in the 21st century, was personalisation, giving people money to run their own lives. This was accompanied by the closure of segregated specialist facilities in favour of people using mainstream services. This is where we are now.

 

Each of these policy eras has repudiated the past as unenlightened, each has been accompanied by its own compelling ideological baggage, and each has failed. Not, necessarily, because it was wrong, but because it was under-resourced and poorly implemented. Institutions have a place, asylum for those who really struggle to manage, who are abused and taunted and need a place of safety. But not if they are understaffed, shut off, and either under-funded or a source of profit (or both). Personalisation is failing, not because it is wrong, but because it has been grafted onto a system ill adapted to managing it, because it has, conveniently in an era of austerity, taken ‘independence’ at face value to mean neglect, and because there just isn’t enough money.

 

So where does this leave us? In my view, it suggests that no one policy fits all circumstances. The ‘learning disabilities’ label is applied to a wide range of people, some of whom can flourish with a little support, but many of whom cannot. We will look in vain for the perfect policy answer, it does not exist.

 

My second point is workforce.

 

Never, in all the policy changes, has there been commensurate investment in a workforce fit for purpose. Have you ever wondered why it is psychiatrists who are the medics responsible for learning disabilities? It is not, after all, a mental disorder. The reason, according to Mathew Thomson who wrote a magisterial account of Mental Deficiency in the mid twentieth century, was because no one else wanted such a lowly specialty without a cure. Psychiatrists, the lowest of the low in terms of esteem, saw it as a way to carve out territory. This does not mean it is the best solution from the perspective of the people they ‘treat’, but to my knowledge it has not been seriously challenged.

 

It is not only psychiatrists. The only dedicated professional pathway is nursing. They may do a good job, but it is not ideal when we repudiate a medical model.

 

The same mistakes keep happening. When the institutions closed many staff just moved over to the new homes, bringing institutional attitudes and practices with them. When personalisation was introduced it was those same local authority personnel who had managed the old ‘we know what is best for you’ system suddenly expected to embrace individual empowerment. It just does not work.

 

In 1979, Dame Peggy Jay, in one of many reports on learning disability nursing (find it here,) made herself unpopular with the nurses by arguing for a dedicated workforce which combines the best of nursing and social work skills, to make a success of the ‘ordinary life’ her Report advocated. My sense is that we need to revisit this idea of a workforce fit for purpose. It’s not the same sort of workforce Jay advocated because she was visualising people living in groups, staff working in teams. The workforce to make a success of personalisation are people who work, largely unsupervised, in people’s homes, whose job is to support their citizenship. Far from an easy job, yet, there is no training for it.

Because other solutions have failed, are failing and will continue to fail, increasingly people look to the law and to regulation to correct the policy gaps and failings. Hence the DoLs, the ineffectual efforts to reform them, the use of the Human Rights Act to wrestle Steven Neary out of the control of Hillingdon Local Authority, the feeble CQC reporting but not acting when care is appalling. Both law and regulation are blunt instruments, incapable of making sense of and managing the many and diverse human dilemmas thrown up by the challenge of supporting people with learning disabilities to be fellow citizens. Maybe, just maybe, people trained specifically to that end, trained by people like Steven and Mark Neary, Sara Ryan, Gary Bourlet, Learning Disability England and my friends at My Life My Choice, might be a way to really make a difference.

 

 

 

[1] Murdered by his so-called ‘friends’

Survivors?

Campaigners in mental health have long adopted the label ‘survivor’ to indicate both their journey through an often unhelpful system of care and their resilience in surviving to fight another day.

But to my knowledge this term has not been used by people with learning difficulties. This is surprising. Many leading self advocates I have met are challenged that they are not ‘really’ disabled because they appear self confident, poised, capable and professional. It is a double bind. The more skilled they appear as leaders, the more likely it is that they are dismissed as wrongly labelled and ‘unrepresentative’. Yet I know, because they have shared some of their life stories, that, despite appearances, they have gone through special education, they have been assessed, been obliged to live with people they have not chosen in group homes or supported living, or, worse, in secure accommodation. They have known what is is like to pass your days in adult training centres, or sitting at home for lack of money, support or opportunity.

Labelling yourself as a ‘survivor’ in such circumstances seems entirely justifiable. And a good way to counter those people who want to dismiss you for being too effective.