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?

Jan Walmsley

Launch of Learning Disability England, June 14th 2016

by Jan Walmsley

It was an exceptionally showery June day in London when Learning Disability England was launched in the House of Lords. And what a tremendous event it was. Chaired by the inimitable Gary Bourlet, and attended by a fantastic number of self advocates (and others) from across the country. The message – we – self advocates, families and service providers – are stronger together. And boy, do we need that voice now. Gary Bourlet puts it well here http://peoplefirstengland.org.uk/gary-bourlet/were-launching-learning-disability-england/

Our host was Baroness Sheila Hollins, and she was joined on the platform by another redoubtable House of Lords campaigner, Jane Campbell. Jane’s speech was especially memorable, on an exceptionally memorable day. I liked ‘We are not vulnerable, we just find ourselves in vulnerable situations’. And, momentously, she acknowledged something people associated with self advocacy have been saying and thinking for many years, that the early disabled people’s movement, of which she was a leading light, failed to acknowledge the voice and different experiences of people with learning disabilities. She promised this will change.

A minute’s silence for all those who have died in Assessment and Treatment Units was incredibly moving. And, personally, I was delighted that my dear old friend Jackie Downer was one of a number of self advocates who were awarded lifetime membership of LDE.

As ever, I was prompted to thnk about the historical context. A united voice for people with learning disabilities in England (unlike Scotland and Wales which both have national People Firsts) has been a very long time coming – and, although I hope to be proved wrong, I am not sure it is here yet. I remembered a conference back in 1994 which sought to set up a national People First in England. Held in an anonymous hotel in Daventry, of all places, one man and one woman from every town or county was invited. Many places responded. Some delegates had never been out of their home towns before, let alone to a national conference, whilst others, like Lloyd Page, Nigel Lott and Ian Davies were experienced campaigners. Another amazing time observing self advocacy at work, one of so many I’ve been privileged to experience in my life. It was a harmonious occasion, and was crowned with a visit from John Bowis, then a minister (in a Tory Government) who offered £50,000 (as I recall) to set up a national organisation. Hard to believe it, but I saw and heard this. Unfortunately, there was one large and well established self advocacy organisation who refused to play ball. And the initiative foundered. Until today, that was as near as we have come to a united voice for self advocacy in England.

But there were significant absences yesterday too. Mencap, the self proclaimed ‘Voice’ of learning disability, was not represented. And I saw few National Forum members, although leading members of the National Valuing Families Forum were there. Is this ominous? I really hope not. As I said, this united voice really is needed, and it is to the credit of all involved that it has got this far, with many well wishers. If you agree with me then do join. LDE will need all our help and support as it seeks to establish itself. I really wish us luck.

Life stories in East Kent

by Jan Walmsley

More than 20 people with learning disabilities and their supporters came to learn about recording their life stories at Canterbury Christ Church University’s Broadstairs Campus on a wonderfully sunny day in March. The workshop was led by Jan Walmsley and Sue Ledger, members of the Open University’s Social History of Learning Disabilities Research Group.

People came from all over East Kent, from Folkestone to Canterbury, Dover to Margate. On arrival, everyone looked at examples of life stories by people with learning disabilities, going back as far as Joey Deacon’s back in the 1970s. And met Joyce Marsh, who, with the help of Mencap volunteer Linda Smith, actually published her life story in 2015. It was inspiring to everyone to meet someone who had actually done it.

We then viewed a film, No Longer Shut Up, which tells the life story of the late Mabel Cooper. Mabel was taken into Children’s Homes, and later into a huge institution in Surrey called St Lawrence’s. After she left St Lawrence’s she campaigned for the rights of people with learning disabilities, and told her life story wherever she could so that people are ‘No Longer Shut Up’. No one in the audience had lived in a long stay hospital, thankfully, but most people could relate to Mabel’s story – being moved around, being bullied, not having a say in your life, these experiences were shared by many of the people who came.

We then got around to discussing how many people wanted to tell their stories. Everyone did. Lots of people shared bits of their lives to explain why it was important that their stories are recorded.

After an excellent lunch we thought about the practicalities, how people actually tell their stories. Joyce and Linda explained that they had had lots of conversations which Linda had written down. That is how they made their book. We watched videos of interviews, and thought about what makes a good interview. Everyone then practised asking and responding to questions. Some people were quite brilliant at doing this.

We talked about ethics – making sure people know what they are agreeing to; rules about using photos which show people; and thinking about other people whose stories are part of our own lives. Do they have a say in what people record?

Finally, we got around to discussing what to do next. Make a book of people’s lives like Joyce Marsh? Other people liked the idea of making a film about the lives of people with learning disabilities in East Kent. Everyone agreed that these life stories need to be on a website and that professionals need to know about people’s past, as well as their present, and to learn what makes for a good life – and how they can help.

East Kent Mencap, East Kent NHS Hospitals Trust and Canterbury Christ Church University, who sponsored the workshop, are now discussing how to raise money to make the dream of recording the lives of people with learning disabilities in East Kent a reality.

a picture of someone holding up an A3 piece of paper on which are written ideas for a film

Ideas for a film about the lives of people with disabilities in East Kent

#7days of action – Why History

by Jan Walmsley

I felt like a murderess. I really felt I had condemned him to death. And that was when I threw myself into Mencap heart and soul. I thought I must fight for all those who are in the community because perhaps parents won’t have to undergo this trauma in the future if we can improve services in the community. I won’t give up until I die.

(Rolph et. al., 2005)

This was Rene Harris, a founder of Luton Mencap Society, speaking to me about her decision to put her adolescent son, Colin, into Bromham mental handicap hospital in 1954.

There are uncanny echoes of Rene’s words in this blog, written by Paula Rawnsley for #7daysofaction in 2016:

I asked for help. How I wish that I never had asked for help now. How I wish darling Thomas I had kept you by my side and never let you go … I’ll never forgive myself. I can’t live with the knowledge that I left him there in their hands. (https://theatuscandal.wordpress.com)

Unlike Rene’s son, Colin, Thomas did die. His case will be the subject of an inquest. And like Rene, though using different media – Twitter and Facebook rather than fetes and coffee mornings – Paula is campaigning in #7daysofaction so that others do not have to undergo the trauma.

The parallels are striking. An adolescent boy, a family asking for help to manage him as he struggles to come to terms with growing up. And the response, at a distance of 60 years, is to put the young man away, cut him off from family and all that is familiar.

In this blog I explore those parallels, and ask whether there is hope.

The week beginning 18th April 2016 was designated a week to really push home the message that 3000 citizens are detained in Assessment and Treatment Units across England; and that this must end. It’s a campaign spearheaded by families, like Paula Rawnsley, whose relatives are (or were) in these Units. Each day a new harrowing story of an individual who, because of the absence of support and understanding for them and their families at key points in their lives – often adolescence – found themselves taken away from all that was familiar, and placed in a sterile environment, frequently miles from their homes, where relatives need permission to visit.

How can this be? In 2010 I, along with many others, celebrated the final closure of Orchard View, the ‘last learning disability hospital to close’. Despite the shortcomings of ‘care in the community’, it was an important landmark. Yet, even then, I knew this was not the end of institutions. It was just that it was the last NHS hospital to close. Except it wasn’t, because as hospitals closed Trusts were busily building units on the campus to house the people they could not be bothered to support elsewhere. One of these I visited, on the site of St Ebbas Hospital Surrey. It housed people who, in their frustration tore down curtains, damaged furniture, behind closed doors and high wire fences. The TV was high on the wall. There were no carpets, just bare floors and equally bare furniture. As researchers we were not welcomed. And then there is Calderstones, housing over 200 people. Its closure has recently been announced a decade after its first closure. How many closures can any hospital need?

It is families who are leading #7daysofaction. Families have long been the driving force to close institutions. It was Judy Fryd who, in 1946, took the first step of a movement which continues to this day. She published an appeal in Nursery World to hear from other parents in her situation, alone at home with their ‘mentally deficient’ child. She started a ball rolling which eventually created the organisation we know as Mencap. Rene Harris, whom I quoted above, was inspired by Judy Fryd. Mark Neary is the spearhead of #7daysofaction. His son spent a year in an ATU, following a short spell in respite when his dad needed to go into hospital. His Local Authority, reacting not to Steven’s distress at being plucked from everything he knew and made him feel safe, but to some higher order imperative, announced that Steven needed secure accommodation. And Mark had a devil of a job to get him back.

Each heart rending story is different. But there are obvious trigger points. Frequently, as young people with autism and complex needs get into their teens, not only do they struggle with the changes associated with adolescence, they also begin to face the truth that their lives will not be like those of their siblings. They will not leave school get a job, go away to Uni or College, they are unlikely to get a girl or boyfriend, their lives will probably be sheltered and limited. There is a reaction, a change in behaviour, often violence or depression. The family asks for help. No help is forthcoming. Other than the offer of a place in an institution. In the 1950s the advice given to Rene Harris, and many others, was ‘put him away and forget about him’. Now it is more subtle – ‘assessment’, ‘treatment’; beguiling terms which give hope to embattled families. But the result is the same. The young person is removed, often triggering a further round of ‘challenging behaviour’, which is not understood as a response to traumatic separation, but is seen as a further justification to keep the person detained. And the family is left, regretting their decision to comply, but now the situation has gone beyond their control.

A further parallel with earlier parent struggles is the determination of the authorities to deny families access to relatives. In the days of the long stay hospitals this was done by placing people in distant – often rural – sites, with poor public transport. Visiting times were limited to half a day once a month. Families were prevented from seeing the wards. Mail was censored. Home leave was often denied even at Christmas.

Has much changed since? Not much as far as the stories in #7daysofaction are concerned. Almost half of the people detained in inpatient services are more than 50 km from their homes. Families face long journeys. Their access to their relatives is restricted. Home leave is often denied:

Just before Christmas 2015, Nina Ni, went to visit her son, Tizane, in the ATU he is currently being detained in. Tizane had been unsettled for days. He had repeatedly asked to spend some time at home over Christmas but this had been refused by the Responsible Clinician. (https://theatuscandal.wordpress.com)

In the past, the belief that learning disability was inherited gave professionals confidence in denying families access. Now the argument is that as adults people have the right to choose whether to see their families – and all too often, as Sara Ryan’s painfully documented account of her son’s detention and death in the Slade Unit in Oxford shows, professionals choose to believe that the choice is not to see them. The result is the same. Families kept at arm’s length, sometimes with disastrous results, as in Connor Sparrowhawk’s case.

There are differences too. To our shame, little is known about death rates in the past, but some sampling suggests they were high. Undoubtedly many people died prematurely in institutions, from accidents and, pre antibiotics, from infectious disease. Too many young people, like Thomas Rawnsley and Connor Sparrowhawk have died whilst detained in modern institutions. Without their families’ ferocious campaigning these deaths might have been swept under the carpet. But, thanks to social media and those same families, we know about them. The closed doors are not quite as closed as they were.

Is there hope? I think so. Families coming together in campaigns such as #7daysofaction is probably the most significant development in learning disability for decades, since Mencap lost its way, back in the 90s. These families are leading a loose but powerful alliance of people, to put continuous pressure on a resistant and complex system, to hold the NHSE Transforming Care Team to account for their actions. And to use the appeal to our common humanity to garner wider support, from press, media and the public. What next? We can’t let up. Media attention is brief unless fed with new stories. We can all help to keep the media beast fed, to keep those 3000 detainees in the public eye, until they are brought home, and those Units closed.

References

Sheena Rolph, Dorothy Atkinson, Melanie Nind and John Welshman (eds) (2005) Witnesses to Change: families, learning difficulties and history, Kidderminster, BILD.

Contraceptive choices for women with learning disabilities

Contraceptive choices for women with learning disabilities is an Open University research project, supported by a grant from Open Society Foundations (Grant No: OR2014-12989). This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as women with high support needs. Between December 2014 and April 2015 we interviewed 19 women living in several locations across the United Kingdom. You can read the Final Report on our Social History of Learning Disability website.

Jan Walmsley

Disability and Impairment: a technological fix

by Jan Walmsley

Disability and Impairment: a technological fix was the title of a great conference at the London Metropolitan Archives on Friday 27th November. LMA have done a lot of work on disability history including running FREE conferences, of which this was one. It’s a welcoming atmosphere, inclusive of students and experienced academics alike. They deserve to be congratulated.

Speakers’ interpretation of technology was pretty broad. It encompassed the 20-year-old Campaign for the Disability Discrimination Act, highlighted by Tom Hayes from SCOPE, and the portrayal of disabled people in eighteenth century England (Simon Jarratt), as well as what I usually think of as technology, namely gadgets and apps, (Peter Fuzesi), representation of disabled people in cinema (Richard Reiser) and in photography (Ian Jones-Healey).

In this blog I want to highlight two issues which stand out for me. The first is the question of what makes for effective campaigning. Tom Hayes (SCOPE Campaigns Officer) posed this question, intimating that the old fashioned graft of filling envelopes and chaining oneself to railings in the company of others was more effective in creating campaigning communities than the modern practices of tweeting, blogging, and Facebooking. It is a question I’d been pondering as I struggled to write an academic paper on the Changing Face of Parent Advocacy, comparing the local Societies which characterised the grassroots of Mencap’s predecessor organisation, the National Association of Parents of Backward Children, with the blogs and pretty continuous tweeting of the campaign for justice for Connor Sparrowhawk for example. I have some sympathy for the view that the old methods might reach more deeply into the communities they need to reach than social media which, particularly for older generations, is an alien world. Only time will tell.

The other issue is the question Sue Ledger, Vicky Green and I posed in our paper ‘How come we didn’t know this happened?’. Why does it matter that people with learning disabilities, their families, and their allies, know about the history of learning disabilities? We were recounting the work we are doing with Access All Areas to help their actors understand the history of institutions, so that they can in turn share this with other people in London through drama. It was one of these young actors whose quote ‘How come we didn’t know this happened?’ gave us our title.

Do people with learning disabilities now need to know about the old mental handicap institutions?

Even though I have made my name and even a modest living through researching and publishing about this history, it is still a question that troubles me. I have lived through an era when delabelling was all the rage, labels were blamed for many of the ills experienced by people with learning disabilities. But studying this history implies identifying with the label, and being interested in what happened to people with similar labels in the past. This sits uneasily with policies of inclusion and integration, which say we are not defined by our label. Other groups – LGBT, for example, or women – have fiercely argued to record and own their own history. People with learning disabilities have not made these arguments. I’m still not sure whether they should be encouraged to do so.

JW_disability_impairment_Dec15_img1JW_disability_impairment_Dec15_img2JW_disability_impairment_Dec15_img3

The Welfare Reform and Work Bill: SHLD members attend All Party Parliamentary Group

On the 5th November 2015, Sue Ledger and Jan Walmsley from the SHLD Research Group attended a combined meeting of the All Party Parliamentary Group (APPG) on Learning Disability (chaired by Chris Heaton Harris) and the APPG on Disability (chaired by Lisa Cameron). The meeting was held to discuss changes outlined in the Welfare Reform and Work Bill.

More information, including the Report (and Easy Read versions), can be found on the SHLD Research Group’s website.

Transforming Care – thoughts prompted by the All Party Parliamentary Group on Learning Disabilities on 18 November 2015 – by Jan Walmsley

by Jan Walmsley

Transforming Care is the title NHS England has given to its plans to bring people out of distant Assessment and Treatment and Inpatient Units to be supported nearer home. Mencap produced an excellent Briefing Paper to support this meeting of the APPG, presided over by Chris Heaton-Harris MP – the new chair of the APPG, and addressed by the Care Minister Alastair Burt, Chief Nurse Jane Cummings, Viv Cooper of the Challenging Behaviour Foundation and David Jack whose son spent 6 years in an inpatient unit.

The briefing paper indicates why I might have attended this with a sense of déjà vu. I have followed with a sense of despair the battle being fought by Connor Sparrowhawk’s family for justice for their son, and the obstacles placed in their way. I listened to heart rending stories from families at an APPG last year at which Simon Stevens seemed powerless to implement the Winterbourne View Concordat. Now there is renewed energy and even some political muscle being brought to bear with Building the Right Support published in October 2015 re-committing to closure of in-patient beds.

What is different this time was a theme of the questions. Very fair. We have heard all this before. There is a difference this time. £30 million has been committed by Government to support Local Authorities with transitional costs associated with building community supports while still paying for in-patient beds. There is more money for capital funding, and some ‘dowries’ for people who have been incarcerated for more than 5 years. That helps, for sure. I have argued elsewhere that DHSS money was the crucial factor which enabled hospital closure in the 1980s.

But … why do I remain less than convinced that all this high level attention won’t necessarily change things. The commitment appears to be in place, and to be genuine, but methinks the gap between rhetoric and reality has never been greater. So what is needed on the ground? Some findings from SHLD research came to mind.

Sue Ledger’s PhD ‘Staying Local’ examined what enabled people to remain in their own locality, an inner London Borough. What did she find? That family carers were successful when they had ‘social capital’, from other family members, local staff, faith groups, neighbours and friends. That such networks were fostered through Borough based segregated services, like hostels, Day Centres and local Mencap groups or Gateway Clubs. At times of crisis, responsive and flexible support was crucial. Local staff who knew the families in their patch were able to avert out of area placements at times of crisis by taking responsibility for sorting something out. It might be finding a respite bed when a key family carer was unwell. It might be putting in place interim arrangements while longer term solutions could be set up. It might be creating ways to support people which were at variance with ‘official’ service remits. Shared care arrangements between families and services. Help getting to medical appointments. Assistance in getting tenancies transferred when the carer died. In all cases this required trusted relationships between families and staff. It required staff who knew people as people, knew their histories, who and what mattered to them. People willing to break a few rules. And people who had a commitment to keep them local.