Making ‘Science and The Swastika’ – Hitler’s war against disabled people

Community Living 

Community Living

— Winter 2017

Documentary film-maker Saskia Baron looks back at the production of the Channel 4 series about the Nazi eugenics era, in which she brought to public attention the campaign of mass-killing against people with disabilities.

There used to be a saying in British TV circles that if your documentary proposal had Egypt, sex or Nazis in it, you could get it commissioned. I had already made two documentaries about the Holocaust for the BBC when Channel 4 commissioned a series about science during the Third Reich. Two programmes would look at aviation and physics, the other two would focus on the Nazi plan to improve the human race through biology and medicine, and those were the films I worked on.

The Nazi sterilisation campaign – and the more covert murder of 100,000 disabled German children and adults in the name of eugenics – is perhaps not as widely known as the slaughter of millions in the concentration camps. I was keen to explore this history and get the story out to a wider audience, while being wary of British TV’s seemingly insatiable appetite for dwelling on Nazi horrors. There were so many respected scientists and doctors involved; they had become key players and ensured that eugenics was at the heart of the Nazi agenda. I wanted to understand how such thinking evolved and to make sure that their victims’ voices were heard.

It is sometimes forgotten because of the dark shadow cast by the Holocaust that eugenics originated in Britain with Francis Galton and was not originally dominated by right-wing thinking. The Eugenics Society’s supporters included Winston Churchill and John Maynard Keynes and it was George Bernard Shaw who suggested that the disabled be dealt with by a “lethal chamber”. Beveridge himself favoured the prevention of reproduction by people with disabilities. Even The Guardian in 1934 endorsed a parliamentary report advocating voluntary sterilization of the unfit.  Eugenics was a global phenomenon; Hitler was a keen reader of American eugenicist literature while writing Mein Kampf. He was envious of US legislation that had seen tens of thousands of Americans forcibly sterilized in the 1930s.

‘Useless eaters’

When Hitler came to power in Germany, he embraced the notion that the people’s health would improve through increased exercise, better diet and state encouragement of increased birth rates for ‘ideal couples’, while sterilising those of ‘poor stock’. Many German doctors embraced this wholeheartedly, reporting patients with congenital illnesses, constructing family trees and advocating sterilization for anyone believed to be the bearer of a hereditary condition.

It was a short step from there once the war was under way to propose that in straitened times, disabled people who could not work were ‘useless eaters’ and ‘lives unworthy of life’. The Action T4 programme set about killing over 100,000 disabled adults and children through a mixture of starvation, lethal injections and gas in sealed trucks or chambers constructed in hospital grounds. When protests arose from the church, amid fear that the programme would spread to include elderly people and war-wounded, the Action T4 programme was shut down and its technology and experts moved on to the concentration camps.

With the help of an excellent associate producer, Shaun Whiteside, and advice from historians Michael Burleigh and Henry Friedlander (himself a concentration camp survivor) we set about finding survivors of the sterilization programme in Germany, witnesses to the extermination programme and survivors of medical experiments from the death camps. It was heart-breaking to meet Ralph Thurm, who had been sterilized at the age of fourteen solely because he had deformed hands (which functioned perfectly well as his beautiful drawings proved). We filmed with the sister of a little boy who had been murdered in a hospital for disabled children, where they had both been sent simply because they had no parents. She believed that her brother was given a lethal injection because he had been hungry and had stolen food from the kitchen for himself and other children on the ward.

Our survivors wanted to bear witness and make sure that future generations knew what had happened to them. I worried that in order to get the whole story out or clarify events for the viewer, my questions might cause them further trauma. In some instances, we knew more about what had happened to them than they did. One Polish woman had survived Auschwitz where she had been imprisoned for helping the resistance. She had married after the war but had not been able to have children – which led her mother-in-law to take her to a doctor for examination. We knew that she had been a victim of Dr Carl Clauberg, who had used Auschwitz prisoners as guinea pigs to perfect his technique of cheap mass sterilization through injecting chemical irritants into the womb.

As well as filming interviews in people’s homes, we also filmed extensively in former concentration camps. They had become museums and while the preservation of the past is admirable, the presence of tourists and the curating of history through labels and display cabinets, gave them a distancing effect. It was when we filmed in the asylums and hospitals where the original gas chambers were created to kill disabled people that the past came most vividly to life. Some gas chambers were still in working hospitals where disabled people live or seek treatment today. The staff knew the history of their institutions and were passionate about letting people know what had happened in the past.  Where possible, they had kept the fittings in the gas chambers as memorials. We were shown box cupboards filled with files from the 30s and 40s detailing patients and their purported causes of death. They showed us film and photos of the patients who died during the Nazi era.

These modern-day German doctors who had become historians of the killings in their institutions expressed anger and endless remorse about what had been done in the name of medicine in the past. They described how Germany today has some of the strictest protocols on patient information, strong disability rights and some of the most rigid rules about genetic testing in Europe – all reactions to the Nazi era.

Disturbing interviews

These doctors’ and historians’ remorse was in stark contrast to the proud son and daughter of two key eugenicists, Alfred Plötz and Ernst Rüdin, who were willing to talk to us on camera.  The former was still proud of his physician father, and thought that Plötz’s idea of ‘racial hygiene’ was a very good philosophy that had only gone wrong because it was overextended. Rüdin, a psychiatrist who had been the key advocate of sterilization and later of ‘euthanasia’ had escaped lightly at Nuremberg. His daughter had become a genetic psychiatrist herself and when we interviewed her, still believed that people with schizophrenia should not be allowed to have children as they would not be able to look after them.

One of our final interviewees was even more disturbing. A retired pediatrician and lecturer, Erich Hässler, had worked at the hospital in Leipzig where the first disabled baby had been killed in 1939 on official orders from Hitler’s own physician, Karl Brandt. In our interview, Hässler insisted that the parents had rejected the child, requested his killing and that he had not been directly involved in the murder. But Hässler gave us a chilling insight into the mindset of the times when he said: “Fundamentally euthanasia is murder, but in grave times of need, exceptional cases can occur and this I cannot condemn. And besides total idiot children can’t be educated, they don’t develop, they don’t know any words, they only scream, they have to be force-fed, are doubly incontinent and throw urine and faeces if they are not tied down. These children are idiots, that’s the kind of children we are talking about.”

Since the interview we did in 2000, evidence has emerged that Hässler was more actively involved, contrary to his claims to us. He died in 2005 at the age of 104. Remembering how we had politely eaten cake and drunk tea before filming him in his peaceful, flower-filled garden, still fills me with horror.

Saskia Baron’s Hitler’s Biological Soldiers and The Deadly Experiment for C4 Science and the Swastika, can be viewed at https://vimeo.com/channels/saskiabaron/45195203

Further recommended reading:

Henry Friedlander The Origins of Nazi Genocide: From Euthanasia To The Final Solution.  University of North Carolina. 1995

Michael Burleigh  Death and Deliverance: ‘Euthanasia’ in Germany Cambridge University Press 1995.

How can we help people who fall through the holes in the safety net?

Charlie Callanan 

Charlie Callanan

— Winter 2017

What do benefit claimants do if they have claimed a benefit and due to ‘administrative delays’ their money has not been paid? Or when a letter has been lost in the post but their benefit is stopped because they fail to respond? Charlie Callanan has some advice.

The Department of Work and Pensions and local authorities are the main sources of support our clients might be expected to turn to when they find themselves without the means for financial survival. But unfortunately they may find there is very little financial support to help them.

They may be able to get a ‘short-term benefit advance’ of certain benefits (but not Personal Independence Payment or Attendance Allowance). This is possible usually where they have made a claim for a benefit but are waiting for the claim to be decided  or processed and the DWP thinks it is likely they will be entitled to that benefit. Or an advance may be made where the client already has an award but their benefit cannot be paid on the correct date because of technical processing problems. However, if there is a question about the client’s entitlement, or if they are appealing a decision to refuse the benefit, they cannot get the advance.

Similar help is available for clients who claim Universal Credit called a short-term advance. Where an advance is given, it must normally be repaid from future benefit payments.

Crucial to get advice

It is important to note that if a claimant is no longer being paid Employment and Support Allowance because they have been found fit for work, or if they have received a ‘sanction’ while claiming Job Seeker’s Allowance, and so their benefit has been cut, the rules are different. In such cases it is crucial the client gets advice about challenging the decision and/or claiming an alternative benefit where possible.

Equally if the client has had a change in, or loss of benefit income, it is important to inform the local council so any claim for housing benefit and council tax reduction can continue.

Local welfare assistance schemes

When community care grants and crisis loans were abolished in April 2013 the Government handed responsibility for their replacement – ‘local welfare assistance schemes’ – to local authorities in England, and to the devolved governments of Scotland, Wales and Northern Ireland.

Claimants may qualify for local welfare provision on various grounds. These include where the claimant needs help in an immediate short-term crisis, such as if they do not have sufficient resources. This should include where the claimant has no money due to problems getting their benefit. Clients in receipt of a means-tested benefit, or with no income, will usually be able to make a claim to the local scheme when in need. And people in paid employment who suffer a crisis (eg. due to a fire or flood) should also be able to apply for help.

In England, depending on the needs of the claimant, help might be given in the form of supermarket gift cards or vouchers, white goods or furniture. In the schemes in Scotland, Wales and Northern Ireland cash grants and/or loans are available.

One major disadvantage of these schemes is that if your client’s local authority is not willing to give cash help (as in England) they may not have any money to pay essential household bills, including, for example, ‘topping up’ their fuel prepayment meter. The authority providing the scheme also has discretion over how they run it and decision-making does not involve an independent appeal system. Many providers use rules and criteria similar to those for the abolished community care grants and crisis loans. The scheme in Scotland – the Scottish Welfare Fund – provides ‘crisis grants’ and community care grants.

Please note that the ‘budgeting loans’ available via claims for certain means-tested benefits, or the budgeting advance in Universal Credit, cannot be given for a temporary lack of income. These are only awarded to cover longer-term essential expenses such as clothing or furniture.

If your client is really struggling financially local charitable provision may be available. Sadly, food banks across the UK have become more necessary as DWP policies diminish already low benefit incomes. The provision of free meals at local religious sites is another sign of claimants having to rely on charitable handouts to get by, rather than on what was once called social security.

This article indicates the paucity of options for clients in often desperate need. At the time of writing, the film I, Daniel Blake, directed by Ken Loach, was released, giving movie-goers an insight into how desperate things can get for claimants trying to navigate the UK’s welfare benefits maze.

Further information

Local welfare assistance schemes

http://www.cpag

A powerful story about the instinctive empathy of the dispossessed

Community Living 

Community Living

— Winter 2017

Simon Jarrett recalls a novel from the 1980s that digs out some old myths – and teaches some modern truths.

 The Fifth Child

By Doris Lessing

1988.

The Nobel prize-winning novelist Doris Lessing (1919-2013) is best known for her 1950 work The Grass is Singing, which explored the racial politics of South Africa in the mid-20th century, and The Good Terrorist (1985), about a naïve young woman drawn into terrorist circles in 1980s London.

There was much more besides and one of her most intriguing works is The Fifth Child, which tells the story of Harriet and David, a shy young couple who meet in the 1960s, she an administrator and aspirant earth-mother, he an architect.

They buy a ramshackle, sprawling Victorian house in the Home Counties and while David commutes to his modestly paid job in London, Harriet gives birth to babies. Life is idyllic. They have four children in quick succession and their house becomes a cosy, slightly chaotic hub, descended on by friends and relatives and their offspring throughout the year.

One Christmas 18 adults sit around the table eating Harriet’s copious servings, while numerous children and pets rampage happily around them.

Folk myths

When Harriet is carrying her fifth baby, things seem all wrong. From five months the baby kicks relentlessly against her womb, causing her excruciating pain. She is forced to take tranquilisers and can only think of the baby inside her as ‘the savage’, or ‘the enemy’.

When Ben, as he is called, is born, his appearance and demeanour are deeply strange – “That Ben gives me the creeps. He’s like a goblin, or a dwarf or something”, remarks David’s sister.

Ben’s strangeness disrupts and eventually destroys the idyllic communal life of the cosy family home. A guest’s dog is killed one night – could Ben have done this, though still a toddler? Weeks later the family cat is strangled, and the suspicions grow. His siblings, all older, become wary, and in some cases terrified of him.

Family and friends start finding reasons not to come. Lessing draws on some ancient folk myths and intellectual theories about the disabled child. Is he a changeling, everybody wonders, a child of the devil, substituted for the ‘real’ baby that should have been born?

As he grows up, Ben starts to speak, but only to demand things, and without having gone through any of the intermediate stages of language. Doctors and other professionals are hopeless, school is predictably disastrous. An attempt to move Ben to a particularly gothic children’s institution in the far north is equally calamitous. (“They are sending Ben away because he isn’t really one of us”, explains one of his brothers).

Unexpected salvation

Salvation of a sort, when it comes, is from an unexpected source. Harriet notices that Ben is devotedly attached to John, a local unemployed youth who does odd jobs for them. Harriet sees a bond she has seen nowhere else, and pays John to take Ben off each day, on his motorbike, to hang around with his bunch of unemployed, uneducated, unqualified, drifting mates. They all ‘get’ Ben effortlessly, something which no qualified professional has ever done. They are rough and ready, teasing, politically incorrect, nickname him Hobbit; and each day he returns from their company happy.

When Ben attacks a child at school, it is not a psychiatrist who Harriet summons, but John, who tells him: “You don’t know your own strength Hobbit. It’s wrong to hurt people”. And, with a wink and a thumbs up to Harriet, John whisks the chastened Ben away on his motorbike, to the only happiness he has ever known, with the group of alienated undesirables in the local town.

Crumbling dreams

At secondary school Ben falls in with a group of similar youths, who slowly take over the family home. Is Ben falling in to crime and violence, Harriet wonders, as her old dreams finally crumble? The siblings have all got away as soon as they were old enough to leave. She envisages a new life, alone with her husband, with Ben at large in the world doing whatever it is that he does. “Would people always refuse to see him, to recognise what he was?” she wonders.

This is a powerful story about identity, acceptance, the instinctive generosity and empathy of the dispossessed, and the cruel, clinical indifference of the professional class.

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Will people with Down’s syndrome disappear from our world?

Community Living 

Community Living

— Winter 2017

A new less invasive test for Down’s syndrome could lead to a a huge reduction in the number of people with the syndrome. Do we really want a world that has no place for people with Down’s syndrome? asks Simon Jarrett

 

A world without Down’s syndrome?             BBC 2,  5 October 2016

The Moral Maze: a world without Down’s syndrome?

Radio 4 , 5 October 2016

 

The most startling moment of A world without Down’s syndrome? came during the presenter Sally Phillips’s visit to Iceland. Phillips is best known as a comedy actor and writer (she played Tilly in Miranda and, for those with longer memories, was a star of the all-women late-nineties comedy sketch show Smack the Pony). One of her three children, 11 year old Ollie, has Down’s syndrome.

 

Phillips was visiting Iceland because, in its small population of just over 300,000, Down’s syndrome is dying out. Since a new, highly accurate, non-invasive screening test was introduced over the past five years, 100% of women whose foetuses have tested positive for Down’s syndrome have had a termination.

 

A young Icelandic woman called Halldora wrote an article which asked, ‘Who is perfect? Who can decide that we who have Down’s syndrome are worthless?’ In response a local photographer took pictures of the remaining Down’s syndrome population and showed them in an exhibition. Their faces stared out at us, like a lost Amazonian tribe facing extinction, and recorded for posterity by a sympathetic anthropologist.

 

It was this risk-free test, with its 99% accuracy levels and approved, as the documentary was being made, for use on the NHS, that was the subject of the programme. Or rather, it was the moral dilemmas raised by the test that Phillips wanted to confront.

 

These are complex. The law, and many people, accept that, ultimately, decisions about whether to terminate a pregnancy or not are the right of the mother, based on informed choice. If women know that they are going to have a baby with Down’s syndrome and feel, based on what they know, that this is not something they wish to go ahead with, then it is their right to make that choice.

 

Is Down’s syndrome a disease?

But then it gets complicated. To wish to eliminate a disease, such as cystic fibrosis, is, Phillips agreed, understandable. But is Down’s syndrome a disease, or a type of person? Do we have the right to eliminate a type of person? Phillips’s view was clear, and this was a polemical programme, which presented the case for the right of people with Down’s syndrome to exist, and not be ‘eliminated’ through screening.

 

She interviewed people who held the opposite view. The scientists and professionals, however hard they tried, always managed to make themselves sound sinister and callous. A doctor running screening programmes said: “I have heard that for some people having a child with Down’s syndrome is an intolerable event”. He insisted that he was only responding to parental demand, but then added, “It is a fact, it is associated with mental disability and, importantly, they live for many years. So if we think of it as a burden to the family or society it is a burden that is going to last for a long time”.

 

Cue a cutaway to Sally with loving, humorous son Ollie. “A burden that lasts for a long time?” she asks, “That’s not how I see Ollie”.

 

Lynne Chitty, the professor of genetics who developed the new test, argued that it is not a process of ‘screening out’ a type of person, but an improvement in parental choice. But then she asked Phillips, “How do you feel about the prospects of your son outliving you?” However much scientists claimed objectivity, they seemed to know what side they were on in the ethical debate too.

 

This was an emotional and at times shocking programme. It was lightened by Sally Phillips’s easy, and very funny, wit, although she was on several occasions reduced to tears as she listened to people talking about the elimination of people like her son. The dilemmas raised are far from easy but she made it very clear what the big question is: whatever else we believe, do we really want a world that has no place for people with Down’s syndrome?

 

Full of surprises

On the same night, it was this complex ethical problem that was the subject of Radio 4’s The Moral Maze. Four panellists, two on each side of the argument, debated with each other and with four witnesses, one of whom was Sally Phillips. This was a programme full of surprises, not least the strange alliances that were forged. Giles Fraser, the radical left-wing priest, found himself in agreement with Melanie Phillips, the radically right-wing Times columnist. Both argued that it was a diminution of humanity and its diversity to ‘do away with’ Down’s syndrome.

Opposing them were the former member of the Revolutionary Communist Party and extreme libertarian Claire Fox, in an equally unlikely alliance with Ann McElvoy of the Economist. “I want to eliminate Down’s syndrome and to celebrate and love people who have Down’s syndrome, and I don’t think these two things are contradictory,” proclaimed Fox. She also wanted to eliminate autism. “You’d be eradicating half the people round this table and most comedy writers,” Sally Phillips shot back. The self-advocate Simone Aspis, who appeared as a witness, made her point succinctly: “Screening should not be used to prevent people being born who are different.”

It is a tribute to Sally Phillips that she has brought out into the open exactly what is at stake as a consequence of this scientific discovery. As one of the panellists on The Moral Maze put it, “If we screen out imperfection, it will make us less human.” Whatever route we choose to take will say something about what we as a society think it means to be human.

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Kate – a story of neglect with a happy ending

Community Living 

Community Living

— Winter 2017

Kate’s story is sadly not unusual but demonstrates how neglect can contribute to a person’s loss of skills and reduced participation in life. Nick Johnson and Donna Taundry recount how Kate’s life was put back on track.

It is the nature of working with people with learning disabilities that the relationship between them and their families and helping agencies is a lifelong one. From the moment they are born, or diagnosed as babies, people with congenital disability are on a track that most will never entirely get off.

Parents of disabled children become ardent advocates on behalf of their children. The current crop of parents are probably significantly more assertive about the needs of their child and their expectations than the generations that went before.

There is a well known story in which a woman described her pregnancy like a holiday of a lifetime in which she read about the destination, say Paris, began to learn the language, bought suitable clothes all to prepare for the great occasion. When she gave birth to a disabled child, she described it like setting off for Paris after all that preparation and landing in Moscow where you knew nothing and your preparation was largely useless.

Parent and child are on a steep learning curve and one of the roles parents quickly take on is that of an advocate to ensure this disadvantaged child does not miss out. Into the 1960s, 70s and 80s, parents were still deferential to doctors, social workers, educationalists and other experts in the hope that their advice would ensure the safety, security and maximum development of their child.

By and large, there were two options. You stayed at home and went to special school or you went to a special boarding school, mostly from Monday to Friday. If you presented any kind of difficulty, you may be shipped off to a long stay hospital. Parents were collaborators rather than advocates on many occasions, not knowing what was best.

Kate’s story

This is Kate’s story. When her Mum got into difficulties she went off to the special boarding school. It is not clear what Kate thought and certainly the views of her parents were not sought. It must have been a shock then to be told suddenly that the school was to close and she was to come home. She still went to the day school and there was respite care in the holidays to give some support.

When she came home, her behaviour problems had not been dealt with but it was presumed the parents would be good for another period of caring. Her Mum worked hard helping her with the skills of daily living by using caring and consistent routines. At the end of her education, and with no prospect of achieving any level of independence, she was placed in a specialist care home over a hundred miles from her home.

In parallel with how ordinary children moved on (to college, job, relationship away from home), the idea of Kate moving to a care home seemed normal. Because of the distance, visits were inevitably less often than they would have been and even these tailed off after a while because Kate’s sister hated visiting and, in time, the whole thing distressed her Mum and Dad.

After ten years at this home, Kate was bed-bound, doubly incontinent, unable to eat unaided, drinking from a baby beaker and bathed in bed. She had been bathed in a bath or shower but it had taken three staff to wrestle her into the bath, so the home had given up. She never went out because she could not relate to other residents and in any case could be aggressive and because she was prone to eating her incontinence pads, she was clothed in a Lycra-type one piece that she could not take off or get into without help. All her DVDs, cassettes and equipment were locked away in a cupboard in her room and were only brought out under supervision with staff choosing what they would put on TV.

Daily dilemma

A neutral observer could see that every action by staff that reduced Kate’s liberty may also have improved her safety and security and reduced the amount of distress and aggressive behaviour she displayed. So it was correct but wrong, a daily dilemma in the provision of social care which is always defendable when we cease to consider the views of the service user. And with her support and advocacy a hundred miles away, Kate had no chance. Deprivation of Liberty safeguards had not even been considered.

Once a placement was found for this lifelong associate of the local authority, case files invariably lay dormant with an annual review verifying that the person’s needs are being met and the placement remains suitable with a recommendation for continued funding. It is a sad fact that these reviews were rarely done by the same person and may well have been given to an unqualified person as the task was not deemed complex enough to demand the attention of a social worker.

The only constant in this process was Kate, so no one, except perhaps her overwhelmed and powerless Mum, could see the slow deterioration of her skills and involvement in life. Kate could not say what she felt and, seemingly, no one waiting long enough to find out before suppressing any challenge she made.

The role of the social worker

So, thank goodness for the social worker at the tenth year review who looked at her with skilled, ambitious and aspirational eyes and could see this was not ‘life’ for a person under 30! We don’t know whether they had received a clue from an alert about the quality of care from the local Director of Adult Social Care following a safeguarding enquiry. Either way, Kate’s case was critically reviewed for the first time since her placement and for that we have to be thankful.

When social services came back to the parents to say they planned to remove her from the home, their first thought was they were going to be given the caring role back. It had happened before, so why not now and they were distressed and resistant. Fortunately, it was not to be and a local home was to be sought.

There may have been trouble in the background because, on this occasion, price was less important than suitability and most providers know that is usually a sign that the local authority may feel they have been negligent or are at risk of criticism. The fact the care assessment produced a care plan with these needs to be met at a fair price seemed to strike no irony with commissioners. But an appropriate placement was found and Kate is what is most important in this consideration.

A solution was found in a small home in a market town near where she was born. It had an apartment built onto the back where Kate could live with close support but separately from other residents.

The home had no choice but to begin where she was. So they began her support where she had left off at the other home. The move had been traumatic enough and rehabilitation was going to take skill and time.

Her mother was horrified at the deterioration in her daughter but was able to tell the home what Kate had known and the skills she had acquired when she had cared for her at home. She could talk about the triggers that started her poorer behaviours and also what she enjoyed. This seems to have been the first time she was consulted meaningfully.

The home also sought help and guidance from a psychologist, speech and language therapist and an occupational therapist along with a consistent reviewing officer. The plan had to be led by the home manager and her assistant to keep a focus on a culture of improvement as every inch of progress was rolled out to a wider staff group. They trialled next steps with Kate to see what worked.

The first job was for Kate to be out of bed and to feel that this house was different. She chose to sit on the floor. Staff continued to assist her to eat where she sat and and eventually introduced a spoon which she had the option of picking up. This process was evocative of the first teaching of a child. Eventually she picked up the spoon and took food herself. After almost two years, she feeds herself.

She had been bed-bathed after previous staff had given up wrestling her to the bath. To even pass the bathroom was traumatic at first. Creative ideas were used to take some steps – a worker ‘paddled’ in the bath, with the door open, showing obvious enjoyment of  the smells and bubbles in a warm and decorated room. Kate’s curiosity overcame her and she came to peep, eventually coming in and putting her hand in the water before scurrying away. She now happily takes a full bath and is left to soak and enjoy it, with nearby help at hand.

Her continence is managed by her wearing clothes that are modern and attractive but functional for changing purposes and her inclination to remove pads is overcome by someone being with her.

Her things are all out in her room so she can see them. When she chooses a DVD to watch, she can see and select from them all. She ventured out in the garden once she began to feel comfortable, having resisted leaving her apartment. A similar hurdle had to be overcome about going out. Her only memory was of being put into a car and moved to somewhere she didn’t know. Little journeys round the block with the people she trusted most were built up over time to gain her confidence. This development work is ongoing.

Kate is a changed woman, much nearer to the one who left home, and with potential for further exciting development. Who knows, she may not always need so much support?

Unacceptable

Kate is recovering and progressing – at great expense and with a lot of time and patience. These steps could have been held and carried on from her mother’s early work. It is false economy for commissioners to buy the cheapest or ‘good enough care’ for a person  with complex needs, when most of us know that a high cost intervention may be needed later to correct the damage caused by inadequate investment. It is unacceptable because the people who ‘pay’ for this are the Kates of our world and their families.

At the time of writing Nick Johnson was Director of Development and Donna Taundry Home Manager, both at Exalon.

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“My dear, the devil is busy day and night…”

Community Living 

Community Living

— Autumn 2016

Simon Jarrett discusses a hit play from the 1960s that broke new ground by featuring a character with profound learning disabilities.

 A day in the death of Joe Egg (1967) Peter Nicholls

Peter Nicholls’s play tells the story of Bri, a teacher, Sheila, his wife, and their profoundly disabled ten-year-old daughter Joe. It opened in Glasgow in 1967, quickly transferring to London’s West End and then to New York’s Broadway, where it was an award-winning hit. It has since been revived several times both on stage and television.

Joe was born with cerebral palsy and severe brain damage after a five-day labour. Despite the cause of her disability being quite evidently medical error by doctors, Sheila and Bri still wrestle with whether they were in some way responsible. Sheila in particular wonders if her sexually promiscuous past has somehow caused it, a punishment either from God or some vague moral retribution system in the ether.

She is unknowingly reflecting centuries-old theories about maternal culpability and responsibility for disability, brought about by their behaviours or experiences during pregnancy.

A dreadful 1960s trendy vicar, (who can’t help saying ‘fabulous! crazy!’), casually reminds Sheila of an even older explanation for defect:  ‘My dear, the devil is busy day and night… now and then some innocent bystander blunders into the crossfire between good and evil.’

Bitter humour

Bri and Sheila try to cope with the world of epilepsy medication, incontinence, fits, heavy lifting, love and shame that the birth of Joe has catapulted them into. Bri, a cynical teacher cracking quick-fire sarcastic observations on all he sees before him, copes through bitter humour.

Sheila goes to amateur dramatics, to try to spend at least some time in another, less punishing world. Together, they re-enact the scenes they have lived through, in caustically funny interactions. Bri impersonates the heavily accented German paediatrician who tried to explain to them what had happened:

“Mattam, let me try and tell you vot your daughter iss like. Do you know vot I mean ven I say your daughter iss a wegetable?”

As they cope as best they can, their marriage crumbles around them.

Stunning

Meanwhile, on stage, Joe sits slumped in a wheelchair with a tray in front of her. Her only word is ‘Aaaah’ and she has constant fits. Bri and Sheila give her imaginary words and create different characters for her, as they fantasise about what, or who, she might have been. Then, at the end of the first act, something extraordinary happens.

Many people who have ever known a person with profound learning disabilities will have at some point imagined, or dreamed, that the person has started to walk and talk, become able to express themselves, somehow escaped from their disability.

At the end of act one, that dream becomes a reality. Joe bounds onto the empty stage with a skipping rope, singing a skipping song. She addresses the audience, in a clear voice, announcing that there will be an interval. She tells them what will happen in the second act, thanks them, and resumes skipping. It is a stunning theatrical moment.

In the second act Joe reappears, silent and slumped in her wheelchair. Things begin to fall apart. Friends, and Bri’s mother, visit. Bri exhibits increasingly disturbing fantasies (or are they only fantasies?) about ending Joe’s life. Anger, grief and frustration bubble to the surface. The phrase ‘sitting around like Joe Egg’ comes from Bri’s grandmother, who used it to describe times when she had nothing to do. As Joe sits mostly immobile, occasionally fitting, apparently doing nothing like Joe Egg, the world around her starts to collapse, riven with passions and uncontrolled emotions unleashed by her presence. She changes her world, even though all she says is ‘Aaaah.’

 

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Book review – A riveting often witty debut novel

Community Living 

Community Living

— Autumn 2016

Michael Baron, himself the father of an autistic son, reviews this novel about the dramas of a family struggling to cope with a profoundly disabled boy.

Shtum, the Yiddish word for silence, infers and contradicts the very articulate North London setting for this riveting, often witty, colloquial and sad, debut novel. Though there is a happy ending, of a sort, since autism is for life, for me it was a compulsive read as the agonies of the Jewell family develop.

I have been there and wondered why, as a parent with literary ambitions, I had not written it 50 years ago. But it could not have been written then. Far too many children were diagnosed, in the world’s ignorance, as subnormal, ineducable and confined in large hospitals. Yet, in 2011 there was the scandal of Winterborne View and today the disgraceful long stays in short term assessment and treatment units.

Challenge

My ASD son is now 60. I am like the narrator Jem Lester. I am his fictional protagonist, his anti-hero, if you like, the 37- year old Ben Jewell. Jonah, aged 10, is the child of Ben and Emma. Together they face the existential dilemma of all parents who live with autism. How, why, where, and who will act up to the challenge? This is not a book that makes its points in the exceptional quirky, headline-grabbing way that made Mark Haddon’s The Curious Incident of the Dog In the Night-time a best seller, or as in Dustin Hoffman’s highly realistic performance in the film Rain Man. Both were and continue to be effective global advertisements for autism. It’s real and it happens to us. And it is worse than the lives portrayed in the 2016 TV drama The A-Word.

This novel could not have been published in the 1960s when children who were ‘mentally handicapped’ were in a sense imprisoned, their behaviours as violent and unpredictable as Jonah’s, in institutions of variable quality. Not so any more but the challenge remains.

When the novel opens, Ben is working in the media but is sacked for his drinking habits. Then he becomes the manager of the kitchen equipment hire business founded by his father Georg, a Holocaust survivor. Originally from Hungary. Georg Jewell is silent about his early life story, portraying a different sort of violence only revealed in the last chapter of the book.

But silence is not an option for the parents of this profoundly learning disabled boy, self–harming, doubly incontinent and so still in nappies. The public only glimpses the behaviour that wrecks marriages when there are newspaper headlines or appeals on websites for petitions to be signed about atrocious care.

Where Ben meditates on his lot, drowns his sorrow in drink, I meditate with him. It could have been me had it not been for the great teachers, schools, care homes, and the love and friendship of other parents. As I read Shtum, this story spoke to me and to thousands of young parents. We knew we did not have on our over-worked hands, our companion to sleepless nights, that computing genius who was to hack into the Kremlin’s security network and save the world. If this review is special pleading, then I plead guilty but I am seriously proud to find a tale which mirrors exactly the circumstances of having in the family an autistic profoundly disturbed child.

Rather than ‘autistic’ I prefer a definition of learning disabled with communication disorders but that is a grouse about today’s simplistic use of one–word labels for complex conditions, and the ever expanding statistics of incidence. How Ben manages himself, his business, a failing marriage, a wise father dying of cancer, the search for the best school, finding money for lawyers for the necessary SEN tribunal is not an unfamiliar story but one that had to be told.

Battle

How to do the best is the parents’ mantra, better expressed by Ben in the conference with the barrister hired for the tribunal where parents battle with cash-strapped local authorities for specialist educational provision as “I’m here to provide the best possible future for my son and so my wife and I can share a home again”. Yes, and it is the main strand in the novel. The parents separate so that Ben can pose, as he in fact becomes, a single parent coping with a grossly difficult child with the help of father and friends. That best future is not the day school preferred by the borough but the residential school which father and son, each in their own way, know is right.

How Ben triumphs is the not-quite happy ending. There is a coda. His father’s story is just that, with more than a hint of a genetic connection to the past.

At the end the imaginative reproduction of a postcard,  “I love you, Jonah… Daddy XXXX” goes to the heart of what this book is about  – love and survival. Read it.

Shtum by Jem Lester is published by Orion, £12.99.

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Can we learn from the past?

Community Living 

Community Living

— Autumn 2016

We are in danger of repeating our mistakes, says Rosemary Trustam. We are now seeing institutions disguised as community housing and private equity companies that call themselves care companies. Do we ever learn? she asks.

As each week passes we continue to hear heartrending stories about Assessment and Treatment Units (ATUs). How have we arrived at this and why have we not learned from history – or, indeed, decided what really matters to us?

In the early 1980s the North West Regional Health Authority presented a strong policy on resettlement – the strategy was only to pay resettlement where it was into ordinary living, in tenancies in the community. Leaders were trained in values based on the principles of normalisation, which were then cascaded to support and community service staff. Funding was available to develop skills and community services and local joint training teams and challenging behaviour teams were established. There were integrated community teams with social work and health, OT, physio and speech therapy and a children’s service, as well as well-resourced psychology support. An extra support team (for challenging behaviours) had qualified case workers and hands-on support workers, who could move into a situation in a  family or service to buy time with extra support during or to prevent a crisis.

Accordingly it was rare that anyone needed a time-out facility let alone an ATU. We were committed to close hospitals and develop skills in the community.

In the 2000s we had a government lead in Valuing People but despite this community services have eroded and new institutional services have sprung up. It wasn’t until the BBC Panorama programme blew the whistle on the 2011 Winterbourne View scandal that the scale of this began to be revealed.

I have to wonder what good the Partnership Boards have done if there was no tracking of people excluded from local services, nor any review into what local deficiencies might have caused this to happen. Whilst there is no doubt that Valuing People and Valuing People Now did help develop the voice of people with learning disabilities and carers, what it clearly didn’t do is establish the rights of people to proper services.

Since then community resources have been regularly stripped out so that today our district only has two or three community nurses with a very long waiting list for help so is without the capacity to step in when crises occur.  One could speculate that it was its very success that led to its reduction, but it is more likely because learning disabilities is too often a junior player in community services of larger trusts, often without a seat on the board. Dare I say there is also shrinking knowledge and expertise in commissioning?

Where has the money gone?

This money has generally gone to meet other pressures in health but there has also been a growth in ‘re-institutionalisation’ with new business opportunities for health trusts and private agency hospital services which waste scandalous amounts of money in high fees.

Maximising profits for investors does not look like a clever response to the austerity push. Whilst desperate commissioners look for cheaper solutions and seek to bring people back from ATUs, they’re likely to persuade themselves that pretty buildings give people a place in the community. However, such models are unlikely to do more than enable people to see the community out of their windows.

Self-advocates with learning disabilities in the North West region have expressed concern about ‘clustered housing’. One example cited was nine flats for people with learning disabilities, many of whom had wheelchairs, supported by two staff between them all. This can hardly be meeting people’s individual needs but will be cheaper than separate living in the community. We know that alongside the austerity cuts and the increased minimum wage, local authorities have suddenly found themselves liable to pay the minimum hourly rate for sleep-overs in supported tenancies. This escalation in sleep-over costs is making commissioners look for savings, at the risk of undermining people’s more individual lives in the community.

The shared costs of ‘clustered housing’ are an obvious temptation for commissioners and a tempting new business opportunity for companies focused on costs and profit rather than person-centred solutions for people. Perhaps developers really don’t know that such initiatives (which can certainly give good returns) do not present the conditions for inclusive community living. Current commissioners will be tempted unless providers of integrity can find some better solutions for reducing costs – solutions like assistive technology or sharing some response support in localities across providers.  A good example is Imagine, Act & Succeed (IAS)’s thoughtful development of twelve flats, half for people with learning disabilities and half for ordinary community tenancies. (Community  Living, 29, 2). Without such initiatives, we will be developing another excluding housing solution.

New institutions?

Are we seeing the building of new institutions fooling us by offering tenancies and nice housing in the community? How ‘in’ the community are blocks of flats in scale? How much does this actually set people apart?  An example of this sort of business opportunity is seen in the partnership of three organisations: HP Villages, a developer, with Inclusion providing supported housing management and Lifeways offering support services. Inclusion was set up by individuals with experience in care commissioning, and care home and small hospital construction and management. Running care homes and private hospitals does not suggest experience in community living or ordinary housing. Lifeways is a large provider owned by Omers Private Equity, an arm of one of Canada’s largest pension funds, so is also driven by investment. HP Villages was only established in 2011 and became a joint venture in 2012 with Community Solutions, part of Morgan Sindall investments.

Forgive me for thinking that a primary motivation is about profit. HP Villages and their partners are involved in major project development of units of accommodation for people with learning disabilities across the North, Midlands and South East.

People already have barriers to being accepted because of their difference – such barriers can be lowered by being known as individuals in their communities and seen as such. In the early days of resettlement, people were aware of the likelihood of community discrimination resulting in exclusion so we had to think carefully about how housing was grouped and how people interacted with their local resources.

Can you imagine how this could encourage inclusion when 20 people being supported in their local community end up in the same local pub or shop? These large clusters of up to 20 apartments for people with additional needs will clearly have a community impact, as large numbers of people with staff support will have a conspicuous presence, even assuming they have sufficient support to go out individually. One can imagine what the reality might be if people are either grouped together to go out or multi-staffed to manage behaviours.  People’s assumptions will also be that everyone in these flats has behavioural challenges if there is just one incidence.

My plea is for developers and commissioners to think about this and look at what is possible, like the IAS model, which still remains person-centred and values-driven, offering real inclusion but sharing costs.

 

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Sharing ideas to stay safe in the community

Community Living 

Community Living

— Autumn 2016

Female researcher

People with learning disabilities have shown they can find their own solutions to keeping safe but those supporting them should try to ensure that family networks are maintained. This research is being conducted at the Connect Centre for International Research on New Approaches to Prevent Violence and Harm, based at UCLan. Dr Rachel Robbins explains.

Study title:  Making it Better, Learning Disabilities and Community Safety

Aims: The aim was to look at what makes people with learning disabilities feel safe and unsafe and using creative methods to share ideas to improve community safety.

Methods: This small scale developmental project has been carried out with two self-advocacy groups in the North West of England. Three people with learning disabilities have been interviewed about when they feel safe and when they don’t feel safe. These interviews have been used to produce short animations which can be used for training and information. One of these animations was shown to 10 self-advocates in a focus group and highlighted other instances when people have not felt safe and what would help them to feel safer. The detailed case studies give a voice to people with learning disabilities.

Background

The first time disability hate crime was recognised by the Criminal Justice System was in 2005 with the implementation of the Criminal Justice Act 2003. Data on hate crime is not collected on the basis of disability and although little academic attention has been paid to the issue, Quarmby (2008) catalogued a range of alarming hate crimes against disabled people. The available research demonstrates a limited response to reported disability hate crime (Roulstone et. al., 2011). What is known is that people with learning disabilities are more likely to be exposed to traumatic life events (Wigham et. al., 2014) because of several factors including an increased likelihood of institutionalisation, reliance on care-giving, being seen as vulnerable and lacking in capacity, an increased likelihood of being in poverty and prejudicial attitudes.

The research is in line with the growing movement to ensure that the stories of people with learning disabilities are placed centre stage. It was designed to make sure that people with learning disabilities could tell their own stories which could provide training resources and material for self-advocacy groups to use. The research examined the compromises they are expected to make to stay safe.

 Findings

While analysis of information is on-going, it was clear there is no shortage of people with learning disabilities who have experienced feeling unsafe and/or mistreated. The three individuals each described typical experiences and aspects of harm and abuse. These were: institutional abuse in a group home, violent hate crime in their own home, and mistreatment using hospital services. The focus group with self-advocates provided further examples of workplace bullying and street harassment.  However, everyone involved was also very clear about what would help them to feel safer.

A copy of an animated case study can be found at: (https://www.youtube.com/watch?v=lHxODc5I1o4&feature=youtu.be ). This is the story of ‘Henry’ who talks about a serious crime that happened in his own home. He now feels safe because he has moved to a group house where he likes the support and the other housemates.  He now lives a much fuller life and has even been on holiday to Cuba.

Family

All three individuals talked about their family and important family members. Some lived with their families, some had lost significant family members but all wanted to have contact with siblings and wider family members. This was sometimes difficult because of distances involved but new technology was helping some to stay in touch with their relatives. However, they also talked about professional attitudes towards families and relationships as barriers to keeping in touch or making a new family.

Community

Much of the harassment experienced was in the community: on buses, on the streets, and at the workplace. All three felt that the solution was to tackle the bullies, rather than to expect people with learning disabilities to change or move away. They wanted better community policing and to be listened to when they made a complaint. Too often they felt ignored.

Companionship

Loneliness was something they all experienced. One focus group member came up with a novel way to help with her loneliness. She wanted a dog because it would bark at strangers to keep her safe, make her walk every day to keep her fit and would be company in the evenings.

Autonomy

Although they didn’t want to feel alone, they did want to be in control of their own lives.  Because the research was undertaken with self-advocacy groups, those involved were good at saying how being part of a group was important but they also wanted to be able to speak up for themselves. Some were on a management committee and this gave them a real sense of belonging and a belief that they could make the world safer for themselves and others.

Conclusions

People with learning disabilities are vulnerable to harm and abuse because not enough attention is paid to their needs for family and companionship, nor are their voices necessarily heard when they make complaints about harassment in the community. For the three people in this study, the circumstances had to get very bad before they were dealt with and some of the harm could have been easily avoided. However, people with learning disabilities are able to live well and safely when they are surrounded by a supportive network of friends, families and support workers who listen to their concerns and attempt to address them.

Key Messages

  • People with learning disabilities are clear about how they can be supported to feel safe and avoid unnecessary harm
  • Self-advocacy groups are an important way to support people as they can work on solutions together and make sure their voices are heard
  • Families for adults with learning disabilities are not just a part of their past, they need to be considered part of their present and future. This could mean ensuring that families are kept close together, or that communication between family members is prioritised and facilitated through technology
  • Those working with people with learning disabilities in the community need to support their need for companionship and focus on building support networks, including pets.

References

Quarmby, K. (2008) Getting Away with Murder: Disabled People’s experiences of hate crime in the UK. Report for Disability Now, UK Disabled People’s Council and Scope, London.

Roulstone, A., Thomas, P. and Balderstone, S. (2011) “Between hate and vulnerability: unpacking the British criminal justice system’s construction of disabilist hate crime”. Disability and Society, 26 (3): 351 – 364.

Wigham, S., Taylor, J. L., and Hatton, C. (2014) A prospective study of the relationship between adverse life events and trauma in adults with mild to moderate intellectual disabilities. Journal of Intellectual Disability Research,  58 (12) 1131 – 1140.

 

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Achieving compliance with the Care Act

Community Living 

Community Living

— Autumn 2016

Provider rates, lawful and unlawful cuts, advocacy entitlement, carers’ rights, charges and funding legal challenges were among the subjects covered by Belinda Schwehr at Community Living’s seventh seminar in June. Report by Rosemary Trustam.

At a time when local authorities are facing huge demands, the law has made social workers into gatekeepers, the decision-makers on assessment and eligibility for care, said Belinda in her opening remarks. Yet few are qualified or have the necessary experience to make such decisions. “Social workers’ judgments are only as good as they are allowed to develop them and they can be left deliberately uninformed”, she said. People who depend on the state are mainly those who have no one to help them, can’t afford their own care or are without mental capacity. Social workers and assessors need to understand the law and not be afraid to speak out on their behalf.

Social care is not as popular as the NHS so is less important to politicians. Belinda cautioned against ‘aspirational rhetoric’ as the law only allows for people’s lives to be brought up to what is tolerable, not better than those of the general population. She cited the example of recommending direct payments for whatever the person wants, which is unlawful, rather than for meeting assessed eligible needs.

Providers’ rates

When local authorities try to cut their rates to providers, these have to be rational figures based on real costs, Belinda warned. If providers allow themselves to be bullied to cut prices because they feared competition this would be the equivalent to lemmings rushing off the cliff. Charity trustees should be aware that it is illegal to subsidise public duties and stand firm. Local authorities should be paying the full cost. If a commissioner suggests another organisation can do it for less, providers should think hard before taking it on and act with integrity. Can they do it properly for less? Ultimately, local authorities have to purchase services at the market rate or provide the service themselves. Belinda cited Newcastle who demanded a discount but lost the judicial review because they ignored evidence about the real costs. She also reminded us that top-ups can only be given for extras – wants not eligible needs.

Under the Act the authority’s duty is to meet eligible needs but it also gives the power to meet ineligible needs above what is strictly necessary. The service user or advocate can argue for these and there would have to be good reasons not to meet them. Authorities are required to keep records of these transactions with explanations so they can be checked by a lawyer.

Everyone is entitled to a personal budget, defined at the cost to the authority of meeting assessed needs, so any direct payment should relate to the provider rate. There are three requirements of a direct payment: transparency, timeliness and sufficiency, with sufficiency tied into the provider rate and interim packages quickly agreed.

Care plans are an entitlement under s25 of the Act but Belinda cautioned against outcomes-based care plans without inputs. “That is the quickest way to give away clients’ rights”, she said. Under community care law it must be stated how identified eligible needs will be met. There can be cheaper appropriate ways to meet needs but the vaguer the plan is, the fewer legal rights can be enforced, as once the needs are in a plan they must be met (Gloucester 1990). Changing a care plan triggers the duty to involve the client, others and advocacy. Clients are entitled to have their needs met even if the money runs out.

A questioner raised a case where the withdrawal of section 117 funding by the NHS had resulted in the stopping of an important activity and a suddenly reduced package. Belinda confirmed that section 117 should attract all the same processes and principles as the Care Act so needs should still be assessed and met.

Clients and others, including providers, have the power to develop the plan and to argue for payments to cover it but as it is not a duty, there is no right to funding. An argument could be made for funding for specialist support; for example, a deaf signer to enable client participation. As this is permitted they must have a good reason not to allow it but it is still the council’s decision on eligibility and plan. However, if they have not demonstrated interest in the client’s wishes or feelings they could be subject to judicial review.

The old law is still the law under the Care Act leaving local authorities in the unenviable and impossible task of managing restricted resources. Hence the moves to try to meet needs more innovatively using, for example, universal services, neighbours, volunteers.

Lawful cuts

With so many reviews being carried out, authorities need to ensure there are sufficient means to meet needs, objectively and appropriately. Lawful cuts can be made if there is a lawful review and proportionate reassessment. Where eligibility of needs is reconsidered budgets and care plans can be changed but there should be appropriate options to meet needs.

Unlawful cuts?

In the Killigrew case, the assessed need was 2 to 1 manual handling for six hours (ie 2×6 hours) so the cut from 12 hours support to six was judged indefensible. Where someone had unpredictable epileptic fits, Sutton was prepared to give three nights a month support, clearly unreasonable.

Croydon, in the Hesley case, wanted a discount so they could find less expensive provision but because they reviewed without consulting the mother or Hesley, who were entitled to be consulted in a best interests decision, they were found to be breaking Community Care law. The argument for Hesley was that a move and the proposed support would de-skill him making him more dependent.

Sutton, in the Perry Clark case, wanted to move someone who had been a tenant in supported living for four years to another provider’s shared tenancy to save money. The judgment was that it rode roughshod over Article 8 of the Human Rights law. This is a useful precedent where authorities are reviewing people out of care homes into shared tenancies or from their home into a shared tenancy. Willingness to move if capacitated should be supported with independent Care Act advocacy or, if incapacitated, with an Independent Mental Capacity Advocate (IMCA) monitoring a best interests decision.

Care Act advocacy entitlement

If people have substantial difficulty with the Care Act process they are entitled to Care Act advocacy. So far this right is not being properly explained but clearly applies to adults with learning disabilities and their families. Although family members may be able to undertake this role, many will not be familiar with the law and will be involved in the assessment/review process anyway. Authorities have a statutory duty to provide Care Act advocacy and have been given specific but not ring-fenced funding which may explain why they have not commissioned enough advocacy. Advocates have the power to examine and take copies of any relevant records where the client has the capacity to consent.

Funding legal challenges

Matthieu Culverhouse of solicitors Irwin Mitchell, who sponsored the seminar, said that although the threshold for legal aid is low, it is still there for people and family members who can bring a challenge and most would qualify for aid. This protects them from both sides’ costs if they lose. When a case is brought on a no-win no-fee basis there is less protection from the other side’s costs. An organisation can bring a challenge though Mathieu advised charities to check before embarking on one. A protective costs order, which limits both theirs and the other side’s costs, may be granted if it can be considered to be in the public interest. Even when a judicial review finds in favour of the individual, the authority can still review their decision in the light of the judgment and arrive at the same outcome.

Principles established under the old Care Act can still apply. For example, in the old Isle of Wight case, the authority’s attempt to water down the eligibility criteria was found unlawful. Sometimes taking a case to court can prompt a decision change. When Salford tried to close its transport provision and failed to consult – a public sector equality duty – it prompted a highly visible public campaign so when it got to court the policy had been watered down. Some people were still unhappy and made successful challenges under legal aid.

In the Sheffield (Davey) case, Irwin Mitchell argued they had to take account of the Care Act’s wellbeing principles and the individual’s wishes and feelings in the assessment and, if not, explain why. Mathieu felt this was one of the most powerful aspects of the Act. “We don’t make people care for their relatives,” he said. “If we force them sooner or later we do damage”. The eligibility threshold for carers is the likelihood of the deterioration of their mental or physical health and this requires an individualised support plan. A carer is someone who provides necessary care.

Carers’ rights

Belinda stressed the Act gives carers the same rights and privileges as individuals. What carers can do will depend on their needs being taken into account and not just given some pre-determined direct payment. The Local Government Administrator for example found Kent to have maladministrated for fobbing off a carer’s complaint about their assertion that they did not have to support carers to work. Many people don’t see themselves as carers but even if they are caring for someone funded under Continuing Health Care, they are still entitled to services and support under the Care Act. Respite is often offered but carers should never be charged for someone’s respite, though they can be for their own. Carers should not be allowed to get to breaking point with the resulting risks. The principle of prevention is in the Act so if the authority gives informal preventive support then fewer people will ask for an assessment. If this funding runs out and the carer is driven to ask for an assessment, this would be a continuing possibly expensive cost for the authority so it makes sense to invest in preventive services.

Belinda said it is difficult to see how the individual’s needs and care plan can be assessed without taking account of the carer’s needs and meeting them. To facilitate this, many authorities are bringing assessments back in-house because social workers are assessing the individual and the voluntary sector the carers.

Charges

Belinda reminded the audience that charges cannot be imposed that would reduce someone’s income below the statutory level (the Minimum Income Guarantee (MIG) ). Allowance for Disability Related Expenditure (DRE) will identify costs, including activities crucial to wellbeing, and she stressed that the mobility allowance cannot legally be considered for charging.

This was a well-attended stimulating day with 100% positive feedback. Delegates were supplied with comprehensive detailed slides for reference. Local authority attenders and others appreciated particularly the balanced information Belinda provided and that her clear exposition of the law’s practical application to all stake-holders increased their legal lit

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Why did West Berkshire lose over its decision to cut funding for short breaks?

Belinda Schwehr 

Belinda Schwehr

— Autumn 2016

The Administrative Court has recently quashed West Berkshire’s decision to reduce by 52 per cent the funding given to voluntary organisations to provide short break support to families with disabled children. Belinda Schwehr hopes this indicates that there will be at least some judicial review principles arising out of the Care Act.

The Administrative Court’s ruling that  West Berkshire should not reduce the funding for short break support underlines the need for legal literacy.  Elected members, as well as their lawyers and social services officers, need to be aware of the law on such  fundamentally important questions as budget setting and how to cope with continuing austerity in the sector.

West Berkshire had done a very full consultation exercise and was not criticsed on that point. It was how the members were advised to consider the options for coping with the results of the consultation that lay at the heart of the case.

The judge’s decision was based on the omission to clarify for members faced with the decision the full meaning of the public sector equality duty or the full extent of the statutory duties in relevant legislation (the Children Act and regulations and the guidance from government, regarding best value and sufficiency).

Reserves

Even though a second decision by the members, to re-affirm the first decision, once permission for judicial review had been obtained, was based on much better information about the legal framework, it did not flag up the possibility, or the pros and cons, of spending some of the council’s general reserves to put the first decision right. The second decision was also legally flawed, by virtue of its having been factually pre-determined – the council’s constitution precluded its rescission within a certain timeframe.

The judge said that there was “an exceptional public interest in ensuring that when local authorities cut spending in a way which affects vulnerable children, they are seen to observe the relevant legal provisions, particularly where, as here, the amounts at stake are, in relation to the budget as whole, not large, and where there was flexibility in the money available, to accommodate a smaller cut.”

The Council had faced an exceptionally difficult financial position late last year – it had needed to make savings of £36m over the last six years. The Council had anticipated a 25% cut in revenue support grant from the government but the provisional settlement for the next four years was worse than that. The Council was to receive 44% less money from the Government in 2016-17, the third largest cut for any English unitary authority – this council was one of the worst affected by the new formula that has been brought in.

The Care Act 2014 had obliged the Council to expand its eligibility criteria for adult social care (it had been at Critical under Fair Access to Care Services), so it had been one of the few that had been obliged explicitly to loosen its criteria to match the government’s view that the Care Act threshold should work along equivalent lines to the old ‘substantial’. Its provisional figure for savings which needed to be made went up from £10.8 to £19m as a result of those unexpected changes by Government.

A large amount of factual information was provided to members about the impact of the proposed cuts but it was still alleged that because of the missing legal information the Council could not establish it had paid due regard to all the factors in the Equality Act.

While members were given the text of section 149 Equality Act, they were directed, in four places in the documents, to a summary which did not accurately encapsulate, for the purposes of the decision about short breaks, the effect of section 149.

Equality

Had the report only included the text of section 149(1), it might not have made West Berkshire councillors’ lives easy, but the judge said she could then have been satisfied that they had at least considered the right question. The ‘summary’ way of presenting the equality issues unavoidably suggested that the approach was equivalent to, or a substitute for, the statutory considerations, and it was not good enough because it included some, but not all, relevant matters.

There was no trace in the materials given to members of any reference to the express language, or to the substance, of regulations 3 and 4 of the 2011 Breaks for Carers of Disabled Children Regulations, or of section 27(2) of the 2014 Children and Families Act (which requires councils to consider the extent to which that provision is sufficient to meet the social care needs of the young people concerned). There was no reference, either, to the duty imposed by section 11 of the 2004 Children Act to make arrangements for ensuring that the functions of the bodies to which that Act applies are discharged having regard to the need to safeguard and promote the welfare of children, or to the best value guidance, to which the Council was required to have regard.

That guidance is aimed specifically at, and ‘sets out clear expectations for’ councils ‘considering changing funding to local voluntary or community groups’.

Paragraph 7 says that ‘Authorities should seek to avoid passing on disproportionate reductions – by not passing on larger reductions to the voluntary and community sector and small businesses as a whole than they take on’.

Had the preparation been done properly, it would have been open to the Council to conclude that, important as the impact considerations were, it was necessary to do less for disabled children, than the Council would otherwise wish to; but members had to be satisfied that the proposed cut was proportionate, and that no other measures, such as increasing fees or reducing other budgets, could be used.

That was why, even though by the time of the second decision, when members were properly equipped, to take into account the legal factors about duties to children relevant to a lawful decision, the later decision was still quashed. The members were still not in a position fully to reconsider the proposed cut because they could not, under the Council’s constitution, rescind that decision.

Litigation

The General Reserve Fund in West Berkshire is ‘expected to cover any of the following risks, should they arise …’ and the list included ‘risks in relation to litigation’. The claimant’s barrister contended that the risk of being required to reconsider these decisions because of legal challenge is just such a risk, and the Council could properly have now drawn on its reserves to meet that risk, and its consequences.

Most interestingly, for those who are fed up with being told that there is simply no more money, the judge said that she was not satisfied by the terms of the new reports prepared for the later decision…

….“that the Council was invited to consider the use of reserves, or, if it did, why it decided not to use them, since apart from the allusion to ‘difficulty’, the report does not explain whether or not it would be proper to draw on the reserves, and does not tell members what the ‘difficulty’ is; whether it is insuperable, or could be overcome. The Council has the reserves. The risk of losing this case, and of being required to reconsider the decision is arguably a risk the reserves are held to meet. I have heard no argument from the Council that it is not.”

It must be obvious from this report that knowing the legal framework under which day to day work is done is an essential skill or attribute for senior management and lawyers working in local government and for voluntary sector provider management – for without it, the prospects of having an influence on cuts that could actually make a difference is much weakened. That means in this context, the Care Act, the Care Act Guidance (especially on commissioning, in chapter 4) and Regulations and what are known as public law principles, for adults’ services decision-making.

The Best Value guidance – applying as much to the need for proportionality in proposed cuts to voluntary sector adults’ services providers, as it did to children’s sector providers here – must be essential reading for any future consultation exercise, for providers all around the country, regarding adult social care budget setting.

The best bit, for me, though, is judicial reiteration of the principle that the Reserves fund is not sacrosanct. Indeed, one of the reasons for Reserves, is management of risk, and that includes legal risk.

And applying this at a service user or advocates’ level, anyone feeling the need to challenge an apparently inadequate personal budget should say this to the Panel in question:

“Reserves surely do need to be formally considered as available for use in resolving this dispute, because I have a good strong case on illegality, which I shall gladly set out for your Monitoring Officer’s consideration, and potential legal challenge. Please give me your reasons in writing why you will not consider the use of reserves, or if you will at least consider it, what your council’s reasons are for your ultimate decision.”

Lessons from this case

  • Council members should be fully informed about the public sector equality duty and statutory duties in relevant legislation on best value and sufficiency, in particular about s149 of the Equality Act on short breaks.
  • Specific legislation relevant to short breaks is in regulations 3 and 4 of the 2011 Breaks for Carers of Disabled Children Regulations, s27(2) of the 2014 Children and Families Act and s11 of the 2004 Children Act.
  • Local authorities should be flexible in their use of money where the amounts involved are small in relation to the budget as a whole.
  • Under West Berkshire Council’s constitution it could not rescind its orginal decision to reduce funding within a certain timeframe so even when members were fully informed the court ruled against them at the second hearing.
  • Best Value guidance on adult social care budget setting must be essential reading for any consultation exercise for all providers.
  • Reserve funds are not sacrosanct and can be used to manage risk, including legal risk.

 

 

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Would knowledge of the origins of village communities help us to understand them?

Community Living 

Community Living

— Autumn 2016

Simon Jarrett looks back on a controversy about village communities that erupted in Community Living 16 years ago and wonders whether a knowledge of history might help in understanding how some unusual ideas come about.

In 2000 Jean Collins of Values Into Action (VIA) wrote an article for Community Living that caused quite a stir. Called Are villages really ‘a suitable option’? (1) the article launched an attack on the whole concept of the ‘village community’, as exemplified by organisations such as the Camphill movement. She argued that ‘dispersed housing schemes’ were ‘the kind of service provision most likely to deliver what people with learning difficulties want’ and that village communities naturally fostered an institutional climate. She also called them secluded and service-dominated.

The article was accompanied by a provocative illustration of a ‘village community’ sign being nailed over a ‘hospital’ sign, in grounds surrounded by a high institutional fence topped with barbed wire.

A year later a strong response appeared from David Coe, Colin Haldane and Robin Jackson of Camphill Scotland, who argued for a ”more informed, mature debate on the subject“. (2) They argued that generally accepted concepts of community were ”largely mythical“ and that ‘homes in the community’ as professionals choose to call them, ”often tend to be islands in an ocean of indifference“. They suggested that ”rights have no meaning in a social vacuum“ and that Camphill communities were in fact strongly linked to the wider community. Furthermore, they were structured on consensus, shared values and beliefs that included people with learning disabilities in a way that rarely happened in what they called the mini-institutions of ‘dispersed housing’. They condemned the tendency of those who clung to the ”narrow inclusive agenda“ to ”dispense stereotypical notions of village communities based on a blend of myth and prejudice“.

Heated exchange

It was certainly a heated exchange and further fuel was added to the fire three months later when Simon Lynn wrote an article called Ravenswood: ‘village ghetto’ or ‘thriving community’? (3). In it he condemned the Ravenswood Village in Berkshire, a village community home to 179 mainly Jewish people with learning disabilities, as a ”segregated and isolated service“. He criticised the absence of Jewish staff, which for him further exacerbated the sense of these people having been ”torn from their communities“. He argued that because Jewish people in Britain are still predominantly urban and suburban, the segregation of a village community was particularly isolating for them, in the same way as it was for black Londoners placed far from home in predominantly white communities.

Clearly village communities rouse strong passions, on both sides. So how did they come about in the first place? Will an understanding of their historical origins help us to understand what may appear to be a strange way of seeking to achieve this thing called ‘community’?

The founder of the Camphill movement was Karl König, a German-speaking Jewish refugee from Austria who came to Britain in 1938. He and a group of like-minded friends, most of them Jewish, had had to flee Austria, which had been annexed by Hitler in that same year. To have stayed behind would have meant almost certain death. The group were all followers of the teaching theories of Rudolf Steiner and his philosophy of ‘anthroposophy’. Anthroposophy is a spiritual therapeutic approach which draws from a number of religions, including Christianity, Hinduism and Buddhism. It is based on rhythm and routine and building a close connection between time, nature, spirituality, community and learning in everyday life. There are many Steiner schools and pre-schools in Britain and the rest of the world today – it is not a system of therapeutic learning only for children and adults with disabilities.

Refugees from Nazism

König became a follower of Steiner when he witnessed a group of severely disabled children participating in an Advent celebration at a Swiss anthroposophical curative home in the 1920s. He claimed that this experience first put the idea of Camphill into his mind. When König first arrived in Britain, a penniless, non-English speaking refugee from the murderous creed of Nazism, he initially experienced despair: ”Here I was, thrown out of my work and I felt like one who, after a shipwreck, is cast on to a lonely, unknown island“. (4: p. 13). Seeking dignity and hope in the face of Fascism, he made the connection between the Nazi campaign to destroy the Jewish race and their genocide against disabled people. Even outside the horrors of Nazism, Jews and disabled children were excluded: ”We dimly felt that the handicapped children, at that time, were in a position similar to ours. They were refugees from a society that did not want to accept them as part of their community. We were political, these children social, refugees“. (4: p.15). He committed himself to the idea of curative education in a therapeutic community.

So it was that a group of European Jewish intellectuals fleeing persecution and a group of disabled children and their parents came together in the unlikely setting of the Aberdeenshire countryside. As one writer has summarised it: ”Scotland didn’t do ‘fancy‘ when it came to education… that the band of foreign settlers might think that the Northeast of Scotland might provide a hospitable environment to set up an alternative community reflects something of a triumph of the will“. (5: pp. 136-137).

Triumph they did, however, and, with the support of a group of local parents Camphill Aberdeen was born. For parents it was an alternative to the bleakness of the asylum or struggling alone, without support, with their ‘ineducable’ child. The system of co-workers was established where children lived within the families of the unpaid workers of the community. The idea was that the teacher must eat and sleep near the child and share their life. Children were taught reading and writing but also handicrafts and music, gardening and farming. For König, to handle a spade and use a saw was as important as being able to draw or make music. (5: p.45). The community was self-sufficient. Fascinatingly, in its early years, the language of the Aberdeen community was German.

Community or institution?

It was from these beginnings that the Camphill movement grew. Further communities were established across Britain, for both children and adults, most famously at Botton Village in Yorkshire, as well as in other countries across the world.

The origins of the movement explain a lot. There was an intimate link between Camphill and the Holocaust. While at first sight the connection between these middle-European intellectual types and Scottish disabled children looks puzzling, in this context it makes sense – both were the object of a concerted movement to remove them from the face of the earth. It is no surprise that they wanted their own community, removed from that always warmly regarded idea of the ‘mainstream community’, which seemed to have no place for them. In the minds of the founders of Camphill their community was no institution, it was an idealistic alternative to the death camps and mass murder that were engulfing Europe at the time. (It was this that evoked such a strong reaction from Camphill Scotland to the cartoon of a barbed-wire topped high fence around a village community, in Jean Collins’ original article).

Is the village community simply one ghetto replacing another? Are they now an anachronism, maybe necessary in 1939 but with no part to play in our modern world? Have the existential threats that brought them about gone away? Do they risk, whatever the ideals of their founders, becoming closed, institutionalised communities? Do we know ‘the type of service provision most likely to give people with learning disabilities what they want’?

All of these are legitimate and important matters for debate. An understanding of the history of the village community is, however, essential for anyone participating in that debate.

References

(1) Jean Collins, Are villages really a ‘suitable option’? , Community Living Vol. 13 No. 3, 2000

(2) David Coe, Colin Haldane & Robin Jackson, Village Communities: time for an ‘informed debate’?, Community Living, vol. 14, No. 3, 2001

(3) Simon Lynn, Ravenswood: ‘village ghetto’ or ‘thriving community’?, Community Living, Vol. 14, No. 4, 2001

(4) Karl König, The Camphill movement, Camphill Books, 1960

(5) Robin Jackson (ed.), Discovering Camphill: new perspectives, research and development, Floris Books, 2011

 

 

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King Carlos of Spain, the great survivor

Community Living 

Community Living

— Autumn 2016

Paul Williams describes the remarkable achievements of the young man with learning difficulties who ruled on the throne of Spain for 35 years at the end of the 17th century.

Overlapping the reign of Charles II of England (1660 to 1685) there was another Charles II on a European throne. Known in Spain as Carlos Segundo, he was king of that country from 1665 to 1700. He was born in 1661 with multiple physical impairments, epilepsy and learning difficulties. When he was only four years old his father, Philip IV, died and as Philip’s only legitimate son Carlos automatically became king.

Descriptions of Charles in history books and on internet sites are overwhelmingly negative, even using words like ‘monstrosity’. Towards the end of his life, when his epilepsy worsened, he was thought by some to be possessed by evil forces and he was sometimes described as ‘El Hechizado’ (‘The Bewitched’).

However, this prejudicial view can be challenged. Charles was a survivor of all his difficulties, he was a popular monarch, and he achieved much during his reign that was highly positive and ensured a strong future for Spain.

Constant companion

Charles’s mother, Queen Mariana, acted as his Regent during his childhood and was his constant companion and adviser until her death in 1696.

In 1679, at the age of 18, he was married to a French princess, Marie Louise of Orléans, a granddaughter of Louis XIII. It was hoped that Charles would produce an heir who would carry on the dynasty of the Habsburgs in Spain, of whom Charles was the last member. Charles did not do this and is usually described as impotent.

He certainly seems to have been infertile but not necessarily impotent, since there is some evidence that he and Marie Louise had a good sexual relationship. Charles was heartbroken when Marie Louise died in 1689, probably of appendicitis.

Again to try to secure an heir for him, Charles’s advisers immediately arranged another marriage, this time to Maria Anna of Neuberg, the daughter of a prominent German prince. This marriage was less happy, but Maria Anna became a strong companion and adviser to Charles until his death.

Charles had limited concentration but took his role very seriously and spent a short time each day with his mother and his advisers expressing a view and coming to decisions. He had little schooling and never learned to read or write but he did learn to write his signature (‘Yo el Rey’ meaning ‘I the King’) in order to sign decrees and documents.

Charles was much loved by his people. When he was ill, crowds would appear outside the royal palaces to wish him well. In 1680 and 1682 two highly visible comets appeared in the sky over Europe (the latter was Halley’s comet). These were thought to be an ill omen for the king and prayers were said for him all over Spain.

Charles lived of course long before the invention of photography but his image, and those of his mother and two wives, and of some events in his life, were recorded in paintings, mainly by the two artists appointed to the Court, Claudio Coello and Juan Carreno de Miranda. Many of these can be viewed on the internet. Charles is portrayed in fine clothes and with the regalia of the highest honours in Spain at that time.

One of the events depicted in these paintings is an ‘auto-da-fe’, a large outdoor religious ceremony held to decide the fate of people accused of offences under the Spanish Inquisition. The one represented was held in 1680 and was planned as the largest and grandest to have been held in Spain. It was presided over by Charles, accompanied by his wife and mother. Belying his supposed lack of concentration, Charles paid rapt attention to the proceedings for the whole day. The ceremony involved 120 prisoners, but only 21 were sentenced to death – probably indicating a merciful approach by Charles. Later in his life he expressed opposition to the Inquisition and just before his death he ordered a critical report to be prepared with a view to its abolition.

Short stature

Charles lived mainly in two royal palaces in Madrid, the Alcazar and the Buen Retiro, where the affairs of state were carried out. However, his favourite palace was the Escorial, situated in the countryside about 30 miles outside Madrid. This was a monastery where Charles found peace and contentment. It also housed, as was common in royal palaces throughout Europe at the time, a number of people perceived as different, including people of short stature and people with learning difficulties. These are often described as ‘clowns’, ‘buffoons’ or ‘jesters’ but they were actually much loved companions of royalty, bringing luck and honesty to the court. Charles’s favourite was Eugenia Vallejo who had what is thought to be Prader-Willi syndrome which caused her to weigh 12 stone at the age of 6. Charles had a portrait of her painted by Carreno de Miranda.

In 1671, when Charles was only 10, a severe fire destroyed much of the Escorial palace and Charles became determined to restore its splendour during his reign. To complete this work in the 1690s, Charles recruited the Italian painter Luca Giordano, famous for his large frescos, to paint historical scenes on the ceilings of the palace, including one which can still be viewed above the main staircase depicting Charles, his mother and his wife.

The period of Charles’s reign was a relatively peaceful one in Spanish history. Spain lost some of its possessions in Holland, Belgium and Portugal but Charles seems to have preferred to accept this rather than engage his country in lengthy and expensive wars.

Spain also had colonial possessions in America, particularly in Florida. There was great opposition between this colony and the neighbouring British colony of South Carolina. In 1693, Charles passed a decree that slaves who escaped from South Carolina to Florida would be given freedom and protection there. It is not known how many slaves this involved but probably hundreds if not thousands of slaves gained a better life because of Charles’s action.

Charles’s epilepsy became worse in the 1690s and, believing he was bewitched, Spanish doctors tried to treat him with superstitious remedies, one of which involved placing dead pigeons on his head. Charles was not happy with this and ordered that advice be sought from Italian doctors who had developed a more scientific approach to medicine. Thus, Charles can be said to have introduced more effective medical knowledge to Spain.

The two separate provinces of Aragon and Castile had been brought together by Charles’s ancestors Ferdinand and Isabella in the 15th century. Conscious that Spain might be split up again because he did not have an heir, Charles decided shortly before his death that the only way to avoid this was to bequeath the throne of Spain to a French prince, Philip of Anjou, and he signed a will to this effect.

Influential

Charles is often severely criticised for this by historians because it led to a violent war, known as the War of the Spanish Succession, which took place between 1701 and 1714 involving an alliance of England, Holland and Austria against France and Spain. Despite this, Charles ensured the unity of Spain which it has enjoyed ever since.

Charles died in 1700 at the age of 39 and is buried alongside other Spanish rulers in a tomb within the Escorial palace. Far from seeing him as a ‘bewitched monstrosity’, we can celebrate the life of this courageous young man with learning difficulties who was an important, beneficent and influential person in European history.

Further reading

John Nada (1962) Carlos the Bewitched. London: Jonathan Cape.

Henry Kamen (1983) Spain in the Later Seventeenth Century. London: Longman.

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David Munns: star of stage, screen – and shopping mall

Community Living 

Community Living

— Autumn 2016

Intro: Whether it’s appearing in The Undatables or performing magic tricks on stage or in his local shopping mall, David Munns is equally at home, as he told Seán Kelly

“Oh, he‘s marvellous!  I’ve seen him before.  I saw him on the TV. I’m always happy when I see him here doing his magic. He is so good at it.”

The security officer at the shopping mall is speaking to me as I photograph David Munns walking around doing small magic tricks for the customers.  It’s a pretty good response to an unauthorised magician in the mall, almost a busker, but David is quite used to getting positive responses. He does not ask for money and people are so surprised at his magic tricks no-one seems to think of giving him any. He just seems happy to practise his tricks in front of an instant audience and to see the delight on the faces of children and adults.

David Munns is an articulate man who says he has learning disabilities. “Well, I was categorised as that but I don’t like boxes or categories”.  He is also a magician and a great performer. After his performance the security guard asks for a selfie with him. That surprised me – I was expecting him to be asked to leave.

Dating

Earlier David and I had met to talk about his recent appearance on The Undateables the Channel 4 show about dating featuring disabled people. David says he enjoyed being on the programme. His first date was at the café in the local park. “I’m going to let you into a little secret. There were two dates but the first didn’t go according to plan. There were two ladies, different ladies each time. The first wasn’t really my type. She wasn’t very articulate, like I’m articulate, and somehow we didn’t really engage. I was feeling a bit ill at the time because it was a particularly grotty day in the park. A particularly grotty day in the park!”.  David often repeats a phrase or sentence several times as if rolling it around to see how it sounds. Sometimes he gradually improves and elaborates on the sentence as he does so, his thinking process becoming visible in the process. Sometimes he just seems to enjoy saying the same thing in a more dramatic way. It is an engaging trait and one which makes me warm to him.

He tells me he knew straightaway the date wasn’t working but he stuck with it for the full hour and a half. “It didn’t really work out. They didn’t use that footage. My date with Claire worked out much better”.  The date with Claire is the one shown on the programme. I ask if he has seen her since and he says, yes, at a reunion for the people featured in the show. “It was good to see her. She lives in Manchester. That’s the problem with a long distance relationship, you never get to see each other. Although I do keep her abreast of what’s going on around here.  I email her regularly to keep her up to speed. I’m like that. I am considerate like that”.

Are they now boyfriend and girlfriend then? “Well no, not really, not yet. I think you should take time to get to know someone before that sort of thing. I am not a rushing-into-things type of guy. I always try to think things out and consider them”.

Some people would find it off-putting to have a camera crew along with them on a first date but David didn’t mind. “I didn’t really think too much about it”.  Since the programme was aired David has got used to being stopped on the street. He says the reactions have all been positive. “When I was walking in the street strangers recognised me. They were nice. People took selfies with me. I was never really bothered by it because it was like performing. I am comfortable performing”.

Confidence

David says he may have built his confidence from performing magic shows to the public. “But I have always had a little bit of that confidence”, he says. He thinks that may stem from when he was young and doing readings in church. “I was nervous as heck but I did them”. I wonder if audiences at magic shows are always as respectful as church congregations?  “Well, there are some people who just ignore me but when I get an audience, if things go well, then I feel good about it.  I think I have gained confidence over the years.”

David says he got into magic at a pretty young age. Originally he wanted to work on ‘big illusions’ like the American magician David Copperfield. What sort of thing? “When I was little I used to saw my teddy bear in half. But I am not really interested in the big illusions anymore. I tend to do more close-up these days”. This means smaller tricks carried out right in front of the person’s eyes. He gives me some demonstrations, changing plain paper into money and making coins disappear. There is no way at all that I can work out how he is doing it.  He says that ‘close-up’ is more powerful because it happens right in front of you. He uses some close-up work on stage. “For example, I tore up a valentine’s card.  I say, ‘Well, I went speed dating but nothing ever came of it’ and then I tear up the card. But then I say, ‘Don’t worry, I’ll soon get over it’, and then the whole card is restored”.

The patter is based on real life experience.  David did try speed dating at the Beautiful Octopus Club and another club called the Groovy Cat but says,“Speed dating didn’t really work out for me. They didn’t really stick round long enough”.

Voiceless communities

For more than 12 years David has been a staunch member of the Spare Tyre Theatre Company, a participatory charity that works with ‘voiceless communities and individuals’. David says, “When they make a script it’s usually out of a collaborative process. They like to use improvisation and then take out ideas and develop them”.  David is not short of ideas himself. “I sometimes have to pull back because I feel I might dominate the group. But I have learned how to ease back”.

David also writes his own scripts.  He reads me part of a radio script he wrote a few years ago called The Further Adventures of Professor Jekyll the Essex Vampire.  Professor Jekyll is the grandson of the original Dr Jekyll (of ‘Dr Jekyll & Mr Hyde’ fame) and despite being a sceptic he has teamed up with a para-psychologist called Dr Helen Fenton. David reads me a section and invests the script with great character as he does so “…Dr Fenton and her telepathy experiments and psychic nonsense”.

David says he previously wrote “a spooky radio play” called ‘Morgan’s Lake’ which was actually broadcast as part of a BBC project called Audio-Tech. He also tells me about a comedy sketch show he wrote which was called “The DM Squad” (ie David Munns Squad). “Basically it was a zany sketch show with bad puns and topical references”. The show featured a private eye who introduced himself with the line “the name’s Hanger, Cliff Hanger”.  David says he started writing comedy by imagining the helpers at his Wednesday group were actors in a play.

Chat show

I wonder if David would consider going on TV again? “Yes, I would if I was offered…. actually I think it would be even better if I had my own show. I wouldn’t mind doing a talk show.”  David has obviously already put some thought into this. He describes the title sequence to me: he would be walking down the street in the style of the sixties TV programme Danger Man. The theme music would be a song I Am A Man by Suggs of Madness. To give me the flavour David sings me the song for a while. The programme would be a chat show with guests but would also feature music and David doing magic and comedy sketches. I tell him it sounds perfect for a prime time Saturday night slot!

I suggest that when this interview is published I could put a note in saying that he has not got a current girlfriend and that if there are any women out there who like the look of him he is still open to love. David agrees but without great enthusiasm. “Yes, I am still open to love… but I would actually like to see Claire again”.  So there is still a possibility there? “Yes, we keep in touch”.  I tell him that I thought she seemed to be a kindred spirit. He is comfortable with the word. “Yes, we were pretty kindred,” he says.  “Not exactly two peas in a pod. But pretty kindred”.

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Exploring the puzzle that is autism

Community Living 

Community Living

— Autumn 2016

Film-maker Saskia Baron is best known for two ground-breaking documentaries. In 2003 she made The Autism Puzzle, which attempted to shed light on the ‘new phenomenon’ of autism at the height of the MMR vaccine panic. It was partly informed by her experience of growing up with her severely autistic brother Timothy. In 2001, Channel 4 had broadcast her two episodes of Science and the Swastika, about the Nazi genocide of people with disabilities. Here, in the first of a two-part series, she reflects on the making of The Autism Puzzle.

My brother was diagnosed with autism in 1961, the year that I was born.  My parents were among the founders of the National Autistic Society (NAS) and I can’t remember a time when I wasn’t curious about what had made my brother and the other children I met through the NAS so different from me. I’d ask questions about causes and try and work out how Timothy and his peers saw things, why some of them could talk really clearly but didn’t seem to be having a conversation I could follow, while others like my brother, worked hard to get any words out at all.

I’d also struggle to explain Timothy to school friends who didn’t know anything about autism. I used to say when I was a child that he could do everything we could – see, hear, speak, think – but that we had in our brain some bit which sorted out all the stuff we took in, and with him it didn’t work in quite the same way and it got jumbled and that made life difficult for him. Sometimes that worked as an explanation, but as I got older, it didn’t seem enough.

Rain Man effect

I wanted to be a filmmaker from my teens. I started writing about movies at university and moved first into arts journalism and then to the BBC where I learnt to direct on the job. I watched any movies and documentaries that touched on autism and nearly always I was frustrated by what I saw on screen. There was always too much focus on it as something that affected children, never anything about adults unless they were savants with extraordinary skills. I’d met a savant with amazing musical skills but he was also blind and mute. He was nothing like Dustin Hoffman in Rain Man and I found it irritating that whenever I mentioned my autistic brother, everyone would ask ‘what’s his special trick?’ or be surprised he was an adult.

I wanted to make a film that showed the full range of autism – adults as well as children and autistic people who were very intellectually able and those like Timothy who would need constant support. When I pitched the idea to a commissioner at the BBC, it was 2001 and the UK was still in the grip of the panic over MMR and the mystery of rising rates of diagnosis.  I knew that MMR had nothing to do with autism but it meant that its profile was raised and won me an hour’s airtime on the new channel, BBC4.

Range of voices

I’m not an observational filmmaker by nature. I admire documentaries where the director slides into the background and lets life take place in front of them.  But I am more of an anxious control freak when it comes to directing: there’s so much to say and so little time, I can’t leave it to chance whether what I want just happens when the camera is on.  I’ve always been more interested in constructing an argument, crafting an essay where you hear a range of voices and the pictures are chosen to tell the story. I was curious about how autistic spectrum disorder (ASD), once a rare and mysterious condition, now made tabloid headlines. What was this worrying thing called autism that seemed to affect ever more people and how had understanding of it changed over my brother’s lifetime? It was a puzzle I wanted to explore.

I took advantage of working inside the BBC itself (unusual for me as a freelancer) and called up everything the corporation had ever made on autism that could be found in their archive. I found black and white footage of the National Autistic Society’s first school, with children being taught by the gifted teacher Sybil Elgar. There were scenes with children who I still knew as adults.  This wasn’t just about wallowing in nostalgia but also gave me a way to tackle the question that parents always want to know when their child gets a diagnosis: what will they be like when they grow up?

Insightful

David Braunsberg was a worried six year old with huge brown eyes in the 60s school film. He had grown up to be an artist and was very articulate but still obviously autistic. He lived with his mother who was also in the old footage. I filmed them together watching their 1960s selves on screen; they gave a wonderfully insightful interview on how autism affected David then and now. David had an excellent memory and could conjure up vividly how confusing the world had been to him as a child and how his autism today could be a troubling source of obsessive thinking but was an asset when it came to painting.

I found a gem – a Panorama about autism with a grim title: And It’s For Life.  Made in the summer of 1974, it featured my then teenage brother Timothy in a bright yellow shirt, moving in to the National Autistic Society’s first community for adults. There was beautiful, clear-eyed Timothy, looking around the coach taking him to his home of the next 20 years. There were the first generation of young autistic adults, moving from school to Somerset Court, with pioneering Sybil Elgar.

Capacity problems

In 2002 my brother was no longer at the Court but in a different residential home. I wanted to film him while he was on holiday with my father. It should have been straightforward but when the BBC films an interview, it needs a signed consent form agreeing that the interviewee understands the nature of the programme, that other people will appear in it, they will be edited, and that the broadcaster retains all rights and can use the footage in different contexts. Timothy lacks the capacity to read and understand a consent form; someone would have to make the decision about whether being filmed was in his best interests and legally it rested with the local authority who fund his care. With a bit of persuading, the local authority did consent and I got to film Timothy and my dad rowing on a lake, feeding the swans and walking along companionably through a wood.  In my dad’s living room, I showed Timothy the footage of him doing a jigsaw puzzle at Somerset Court and tried to work out whether he could identify himself. My dad described how much calmer and happier Tim was as an adult than when he was an angry, distressed child.

I also filmed with two families, each with two young sons on the spectrum, who were very different in how autism affected them. There was a lot of negotiations with their parents about what we would film as the boys were under the age of consenting for themselves. It can be difficult to manage people’s expectations of what taking part in a programme will mean to them; it’s not always easy to make promises. The filmmaker you meet is not always wholly able to control what is broadcast and can’t offer very much after filming has finished. At best, directors are allowed to show participants a cut before the final editing stage and give them time to point out factual errors, but the broadcaster will quite rightly never allow a producer to give away any editorial control.

Pressures

What I do is not shoot scenes in the first place that I think might harm the people in the documentary. With The Autism Puzzle, one of the autistic children liked to walk around naked and had some sensory habits to do with toileting. I told my camera operator not to film any of it and to switch off during his really distressing meltdowns. I didn’t want to make their lives any harder by exposing them at their worst. One criticism of the documentary that I readily accept is that I made life with autism look a little too easy – I admit I didn’t tell the whole story.

Even when I’ve avoided filming something, in the edit I might be pressured to simplify, dramatise and personalise the commentary more than I would like by my commissioner. They are after all paying for the production and genuinely believe it will make the film better. For example, I never meant to include so much of my brother and father in my documentary but my commissioner thought they came over really well and encouraged me to put them in more. That led to me putting in personal narration and caused some family tension after the broadcast; if I had that problem with a film that I directed and produced, imagine what it could be like if you were just a character in a film?

I’m always torn between wanting to encourage a wide range of autistic people to take part in TV to show the diversity of the disorder and increase awareness, understanding and tolerance. It’s vital that their voices are heard, that more autistic lives are seen onscreen. But I’m aware that autistic people can be particularly vulnerable and may not realise that in this era of YouTube and social media, the film they agree to appear in for one TV broadcast may well end up living forever on the internet.

The Autism Puzzle  can be seen here: https://vimeo.com/channels/saskiabaron

 

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3000 lives: How Josh was brought home

Community Living 

Community Living

— Autumn 2016

josh homeJosh’s parents ran a very public campaign demanding, “Bring Josh home’. It took three years and much heartache but today Josh is living close to home and is a very different boy. Father Phill Wills tells their story.

Josh was sent away from his home in Cornwall to a unit in Birmingham because his self-harming behaviour had become life threatening and it seemed there was nowhere locally that could give him the support he needed. It took three long, hurtful, emotional years to get him back to Cornwall and to put together and get agreement on the wonderful bespoke care package he now has.

We campaigned very publicly and got 241,500 signatures through change.org (we are proof that it does work!). All those we fought against are now working together to help Josh’s care run smoothly. He has a team of 16 round-the-clock carers. The evidence that Josh is getting the right care and enjoying life back near his family and in the area he knows so well is in every picture we take of Josh now. His eyes sparkle, he is confident and he loves life again. For me, it’s the environment, the people close to him, extended family being just down the road, his beloved Nan and Pa. No amount of money could pay for that look in his eyes when he visits his Nan’s house.

Positive

So much do I believe in the quality of the care package that he has, I have asked the Care Minister to visit to see for himself. Other NHS England officials are also interested. So what? I hear some of you say. It’s to show these people the difference in Josh, the difference his care package has made to him physically and emotionally. I have always tried to remain positive, to keep people together, to work with everyone who wants the same outcome, the same goal, which is of course to get all of our precious children and adults close to home, where they belong.

One of the main focuses of our very public campaign was to get Josh’s voice and story heard. We certainly did this and, in turn, opened the way for others to speak out. We demanded, “Bring Josh home” and that’s what we achieved. It took lots of shouting, heartache, public and media pressure, but we were lucky and, eventually, we did bring him home. It wasn’t as simple as just leaving Birmingham, jumping in a rapid response vehicle and heading to Cornwall. The transition began ten months earlier, both in Cornwall and Birmingham.

As soon as the local authorities in Cornwall gave the go ahead for a local care provider – Spectrum – to provide a specially adapted bespoke care package for Josh, things swung into action. A new team of carers was hired and we, as Josh’s parents, were involved in the interview process – quite rightly as we are the parents of the child who they, the staff, are going to spend a majority of time with. Meanwhile Josh, unaware of the huge project going on back in Cornwall, was continuing his life in Birmingham while we continued travelling the 520-mile round trip to see him. We were involved from the start: the transition process, the new care package, his autism profiling. Hours and hours were spent going over every aspect of Josh, every part that defines what and who he is. No stone was left unturned, no topic deemed too difficult.

Once the carers were all in place (16 in total) they began to visit Josh in Birmingham so that they could get to know him and, of course, he could get to know them. I think he picked up on certain accents from his homeland and gradually the Birmingham carers stepped back and the Cornwall carers became primary.

A house was rented back home and made ‘Josh proof’ – a lot of work. It had to be registered by Ofsted as a children’s home, as Josh is still a minor.

After a few delays, and a high profile 15th birthday celebration in Truro Cathedral covered by the local and national media, Josh returned to Cornwall on 2 November 2015.

Reliant

What did I expect? Part of me wanted him to go back into Cornwall and run along the beach happily as if he had never been away. It wasn’t going to be like that. I look at it now, 8 months later and realise that back then, I, his Dad had taken him away from everyone and everything he had known. He had spent three years in Birmingham, getting to know the staff there, who loved and cared for him and on whom he had become reliant and now here I was being the one taking him away from everyone in Birmingham and bringing him back 3 years later. After the move back to Cornwall there was a really painful time for me, where Josh seemed not to trust me, I will even go as far as saying he seemed to hate me (a 15 year old boy reaction to his old man anyway perhaps?!)

Our keen outdoor boy, who would walk for miles a day in Birmingham suddenly did not want to leave the house. Was it the bad winter weather? No, looking back, it was because every time he left the house he thought he would not be coming back, that he would be going away again. Trust and confidence was going to take months to build up again. I can see now, that no amount of planning and preparation could have got the homecoming exactly right, but we had all done our best.

It was around Christmas time that Josh’s confidence and trust began to return. He met his 2 year-old sister Marnie for the first time on New Year’s Eve. They hit it off immediately and now they automatically go in for the kiss when they see each other. The Bishop of Truro became President of Spectrum in January, and came along to bless Josh’s house. It was a lovely event. As the weather improved and spring announced itself, so did some of the old Josh – the giggles, the cheeky smiles, the appetite. Josh’s appetite was non-existent in the Unit, food wasn’t prepared in front of him so he didn’t really have a chance to get hungry. Here, in the home, he gets involved, chooses, and helps to prepare the meals and so his appetite has returned.

Josh attends Spectrum’s own school for four hours a day (itself a huge step forward) and whilst there has rediscovered his love of music and loves to bang on a drum. I happened to report this on Josh’s Facebook page and mentioned how a drum kit would suit him. Within days one was donated and delivered. On the back of this, I’m trying to find one for a friend’s son who has been through an experience similar to Josh’s. He is in the London area. So can we find him one? Please do make contact if you know how!

The whole point of our campaign was to get Josh’s voice heard, to exercise his human rights to a family life and to let him have a life that he deserves. The way we shouted is something not everyone can do – and shouldn’t have to. There are still so many sad stories of families torn apart out there. I hope people will see our campaign as calm and dignified, despite the circumstances. I firmly believe the decision-makers are more likely to sit down and work with families this way.

Hope

Josh continues to grow and adapt. His life has altered immeasurably and in some cases irreparably. I do regret not fighting earlier. What’s done is done. Josh lives 15 miles away rather than 260 miles. It’s still not in my home, I still can’t tuck him into bed, or cuddle him if he has a bad dream at 3am. We lived a bad dream for three years but now there is hope, love and a brighter future for Josh. Everyone who supported us and continues to do so has helped to make his future brighter. People comment on his beautiful smile. They helped with that too.

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3000 lives: Active support for families

Community Living 

Community Living

— Autumn 2016

Founder members of Justice Together  – Respond and Bringing Us Together – racked their brains to find a solution for families whose child or young person was facing a placement in an ATU.  Liz Gow of Respond and Debs Apsland from Bringing Us Together describe how Justice Circles work.

Justice Circles came about in direct response to the preventable deaths of Connor Sparrowhawk and Thomas Rawnsley.  The founder members of Justice Together were racking their brains trying to think about what would be the best possible support to put in place for families whose child or young person with autism and/or learning disabilities was facing a placement in an Assessment and Treatment Unit (ATU) or similar facility.

Parents of a young person with autism and learning disabilities are desperate to avoid their child going into an ATU and for those whose family member does end up in one it can be very difficult to get them out again. Families have been actively seeking support and are known to Bringing Us Together and Respond.

Justice Circles

A Justice Circle is a specific model of support we are beginning to develop around the families of people with learning disabilities in crisis. The model so far has been devised by Bringing Us Together, Respond and the rest of the Justice Together team.

Many of the families that we come into contact with have been inadequately supported, neglected or have even experienced abuse from the services supposed to provide support to their family member. In some tragic situations this has led to the death of the person with learning disabilities.

When the families approached us, we offered them an initial assessment in the form of a one-hour telephone call to provide more details about their situation and how they would best be supported. We guided them to the information they needed either through the internet or by sharing our trusted contacts with the relevant knowledge in other organisations.

As a result the families have been able to access the most appropriate practical help (with the Mental Capacity Act, Mental Health Act, solicitors, housing, etc) promptly and without having to spend time searching the internet without really knowing what help they actually need.  When they are in a crisis searching for this practical help is often beyond the capacity of a family. We have also offered the families much needed emotional support, either through our helpline – as and when required – or with a case worker. We have found that keeping the practical and emotional support separate benefits everyone but obviously this needs to be sustainable with adequate funding.

The families who choose to access emotional support are offered weekly one hour therapy sessions with a qualified therapist.  This is either over the phone or face to face at Respond’s clinic.  As we progress, we have been helping the families to build a circle of support.  In the future, we would hope to offer all new referrals access to a circle of support from the start of the process. We believe it is vital to draw on the experience and expertise of many individuals and organisations to help support the families.

What is needed?

We have learned from families that what would help them is a staged process of support:

  • A resource database, where families can get quick and easy information about relevant information, eg. mental health legislation, legal advice on the internet, information at the click of a button without having to search through the internet which can be time consuming and stressful. (We are currently working on developing this – justicetogether.org.uk – however, funding will be required to ensure this is kept up to date and relevant).
  • If families are unable to find what is needed on the internet, the next stage is to call our specialist helpline. This would be a free advocacy helpline staffed by a team of trained volunteers, offering signposting, advocacy and weekly phone calls on a regular basis to those affected by institutional abuse and ‘death by indifference’. This will need to be co-ordinated by a paid member of staff but will be staffed by trained, highly skilled, professional volunteers.
  • The next stage if needed would be to set up a Circle of Support; this would be coordinated by one specific person. The circle itself is a combination of virtual support from a skilled group made up of professionals and family members plus some face to face advocacy support for meetings and writing letters or deciphering and responding to documents such as reports. This both ensures that families and their family member’s voices are heard as well as providing sound information and advice.
  • For some families to regain their emotional equilibrium and strength to support their son or daughter the next stage they could access would be a specialist counselling service. They would be offered weekly one to one counselling sessions, in person or on the phone, with from someone separate to the people who make up the justice circle.

The benefits of Justice Circles are clear for the families, for Bringing Us Together and Respond and the other members of our Justice Together team.  With funding, Justice Circles have the ability to help families as they approach a crisis and to provide the practical and emotional support for families when they are in crisis.

Case study – a family’s fight for their son

Christine’s son James has been in an ATU around 250 miles from home for nearly three years. He has been on and off sections, constantly restrained, isolated, visits stopped, phone calls stopped, abused both physically and emotionally by care staff. He has not been out of the ATU grounds for days, activities have stopped or never put in place. He was also over medicated.

His family have fought tirelessly to get him removed from this ATU, where he should not have been placed in the first place (this is now being investigated). The family have involved solicitors, advocates, social workers and organisations, such as Respond, to help them to get their son removed.

They have managed, at great expense to their health, with the use of a Justice Circle,  to get a bespoke package set up for their son, a new care provider and a new home near to his family. He is due to move in the next few weeks.

His mum is worried about the effects of his trauma, having gone unsupported for so many years.  She is also concerned about the damage that has been done to their relationship as a family as they have not been encouraged to see or speak to him regularly (even though they do when they can and are able to drive to see him).

There are also great concerns that this may happen again and that he may end in another ATU far from home if another crisis happens and isn’t dealt with appropriately. Christine now has little, if any, trust in social workers; she is also wary of asking for help, from new people and professionals.

 

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Elfrida centenary 1916-2016: Celebrating inclusion and achievement

Community Living 

Community Living

— Autumn 2016

Generate is celebrating inclusion and achievement, says Beverley Dawkins

Generate was founded in 1972 as Wandsworth Rathbone, changing its name to Generate some years later.  At only 44 we are relative youngsters but we have our roots in the inspirational work of Elfrida Rathbone. We have much in common with the other organisations in the Elfrida Rathbone ‘family’, working to create better days and better lives for the people we support, enabling them to develop independence and encouraging connections through people, places and activities. Together we have chosen the themes of inclusion and achievement to celebrate this centenary year.

Leon talked to me about what has been important to him about being a Generate member and the work he has been doing for the centenary celebrations. Leon has been coming to Generate since he was 12 years old. He explained that he started coming to Generate youth clubs and said how important it was for him to have something to do after school and college and to meet up with his friends when he was a teenager.  There was the Monday Night Triangle Club, Boys are Us, on Tuesdays and another club on Thursday nights. Leaving Generate for a time when he reached 19, Leon re-joined when he was 24. At school he had always had a strong interest in music and poetry and wanted to develop this talent. Leon explained, “Now I am older, I listen to music and the message it is sending me and I experiment with it when I am drawing and writing. A connection started with poetry – I like the timing, melody, lived content and emotion – poetry has all that. The two things fused!” Leon has had some of his poetry published in magazines. “That was very encouraging. I was surprised and touched and it motivated me to write loads more”.  He is looking forward to getting more work published soon.

As a regular member of our Tuesday music group Leon has a strong connection with our music tutor, John. “I have a keyboard and harmonica at home. I update John and get advice on what I have been working on. He helps me with stuff like the keys and timing and gives me positive encouragement. John can see my talent – he helps me get back on course, gets me to pitch ideas and he makes it work. He is patient and willing to go over it again and again. My respect for John is not in this galaxy!”

At Generate we are all about creating opportunities for people and connecting them with the community. Leon explained how good it is to perform with other Generate members at local venues.  “Concerts are really, really good – we have a laugh. They are never gloomy. It’s upbeat and we take pride in what we do”.

Leon says he thinks that getting out and performing our work will get Generate better known for all the great things we do. Asked what’s most important to him about Generate, Leon says “Generate gives members their own voice. Staff and members come together – it’s an equal partnership. For me it’s important that the door is always open and people are never judgmental. There is a strong network of support. When I had problems I had them to turn to and have asked for help more than once. The support is always there”.

Beverley Dawkins, CEO, Generate

As part of the centenary celebrations of the work of Elfrida Rathbone, the Generate music group has been composing a song. They have certainly stepped up to the challenge of capturing the pioneering spirit of Elfrida!  Part of the song includes a rap that Leon (above)has written.

100 years and counting…

A hundred years is a lot to be thankful for

Work you did, which began in the first world war………

 

And at first the vision that you had was small

The strength you gave us – it made us all stand tall

Come along, join the fun, for the war was won!

Chorus:

You helped us to shine… and I feel fine

Let’s have a good time

 

You showed us the sign… now we’re combined

Lets come together, in all kinds of weather

And celebrate all night – we won’t give up the fight!

Everyone coming out of their comfort zones

Generate, create holidays to stepping stones…

All the talents of equal balance now

Have the voices, make the choices – and here’s how:

Everybody together, forever!

Chorus

Leon’s rap:

Our strength came from a hundred year age

What we wanted was out of our range

At first we were perceived as strange

That’s when things – you decided to change

Fairness and equality was your vision

Soon it became your life-long mission

Took off like a dove in graceful flight

 The love we have inspires us to keep up the fight

Chorus

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We need a united voice for England now more than ever

Community Living 

Community Living

— Autumn 2016

Learning disability england Launch

Intro: Jan Walmsley attended the launch of Learning Disability England where its chairman Gary Bourlet called for self-advocates, families, carers and organisations to work together to achieve change

Learning Disability England was launched in the House of Lords on a very showery June day. It was a tremendous event, chaired by the inimitable Gary Bourlet, backed by the Housing and Support Alliance, and attended by a fantastic number of self advocates and others from across the country. Its message was that we – self advocates, families and service providers – are stronger together. And, boy, do we need that voice now.

This is what Gary said about the new organisation:

“LDE is important because we want self-advocates to work closely with families, carers and organisations that work with people with learning disabilities, to come together and work together.

 For far too long we have been working separately and our voices have not been strong enough on our own to make change.

To make change we need to work with others. United we stand, divided we fall.

Being an independent organisation is an important part of LDE for me. It will be steered by people, families and organisations.

We will campaign on what our members agree on and vote on what issues are important to us.

We will organise petitions, set out policies, go on demonstrations, marches and take direct action. Our trained self-advocates and family members will speak to the media on issues that affect us. We will also meet with politicians and trade unions.

We are creating this organisation now because for far too long services have been bad and self-advocates are tired of fighting a lone battle. By coming together we can fight for better changes in our lives. We also want the media and politicians to listen to us!

It is important that lots of people get involved as there is strength in numbers. We want people of all backgrounds, young, old, all ethnic minority groups, anyone who knows a person with learning disabilities, people with English as their second language, family and friends to join us”.

http://peoplefirstengland.org.uk/gary-bourlet/were-launching-learning-disability-england/

Memorable

Along with many self advocates, family members and representatives of those service providing organisations who have joined (and financially supported) LDE, two redoubtable peeresses were there. Baroness Sheila Hollins hosted the event, joined on the platform by Jane Campbell. Jane’s speech was especially memorable: “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.

Moving

The 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 awarded lifetime membership of LDE.

At a time when austerity and benefit changes are hitting people and families hard, when self advocacy groups struggle for funds, when over 2,000 people remain in assessment and treatment units and when the noble ideals of Valuing People no longer guide policy, this united voice really is needed. It is to the credit of all involved that it has got this far, with many well wishers. Do join. LDE will need all our help and support as it seeks to establish itself. I really wish us luck.

To join: http://www.learningdisabilityengland.org.uk/

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Preparing people for benefit assessments

Charlie Callanan 

Charlie Callanan

— Autumn 2016

To avoid some of the more disastrous outcomes for people attending medical examinations people should be properly prepared and, if necessary, accompanied, says Charlie Callanan

Medical examinations to assess welfare benefit claims have become notorious among claimants with disabilities and those supporting and advising them. Experiences of clients and advice workers include client mistreatment and economy with the truth in written medical reports. These are followed by barely credible negative decisions where the Department for Work and Pensions (DWP) decision-maker has unquestioningly followed the recommendation in the report.

Problems with medical assessments are being highlighted more widely because it is becoming more common for people to be required to attend an assessment in connection with a claim for certain welfare benefits. Decisions on a claimant’s entitlement to Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) are commonly, although not always, based on the results of an assessment with an Independent Healthcare Professional (HCP).

Controversy

The biggest controversy about the effects of the Work Capability Assessment  (WCA) – used to determine entitlement to ESA – occurred last year when the government was forced to publish the number of claimants who died shortly after failing their WCA and being deemed ‘fit for work’. A large proportion included claimants who took their own lives.

The government has contracted work assessments on behalf of the DWP to various private firms, many of which work in various industries, as well as areas like occupational health. These include Maximus, Capita, and Atos Healthcare (which does PIP assessments but gave up doing WCAs, now done by Maximus).

The examinations are carried out by an HCP employed by the assessment providers. They state that all their assessors are medically qualified in their fields and that they all undergo a thorough programme of training and close supervision and quality-checking of their medical assessments.

The professional could be a doctor, nurse, physiotherapist or occupational therapist. But the examiner is unlikely to have specialist knowledge of, or experience in, assessing or treating people with learning disabilities (unless by coincidence). The limited case law on this issue establishes that legally there is no problem with a non-specialist HCP (for example, one who is qualified as a physiotherapist) in carrying out medical benefit assessments on a claimant with learning disabilities or mental health problems.

On a more fundamental level, there is no evidence available to suggest that the HCPs have any specific training in dealing with clients with cognitive impairments, or in the special approach that such clients often require.  Jobcentre Plus was involved in creating the ‘Hidden Impairments Toolkit’ for helping job centre staff, and potential employers, to identify and give appropriate support to people with impairments that may feature communication problems, such as autistic spectrum disorders and ADHD.  However, it is not apparent that the HCPs are given this resource to assist them in dealing with and assessing such clients.

Even the WCA Handbook, used to guide HCPs in completing ESA assessments, contains little advice on how to approach a WCA for a claimant with learning disabilities, other than the following: “Companions will be able to give useful information… In individuals with a learning disability or cognitive impairment the role of the carer may be essential to establish their functional capabilities.”

While this guidance contains a low expectation of the ability of a claimant with learning disabilities to explain their condition and how it affects them, it also indicates that the examiner should be willing to take information from a third party if necessary.

It may be important for carers and professionals to attend benefit-related medical examinations with a disabled claimant when possible as the client may need help to get to the venue and may be very anxious or even reluctant to attend.

Most crucially the client may need some support and prompting in adequately answering the examiner’s questions. Certainly some people with learning disabilities will have a willingness to please or to say the ‘right thing’. This may mean, for example, the client admitting to doing more than they are capable of doing, or forgetting the prompting and encouragement or physical assistance that they may require to do certain tasks.

It is a good idea for clients and any workers supporting them to try to get an idea of what to expect during an assessment. There is lots of advice online about this from advice providers and disability support groups.

Innocuous

A top tip is that the HCP will be assessing the client from the moment they meet. Seemingly innocuous questions will always be asked for a reason. For example, “Do you have a mobile phone?” If the client answers yes, this is taken as an indicator that she is able to verbally communicate and stay in touch with friends.

Thankfully, not all of our clients will have a difficult experience when attending a PIP examination or a WCA. But it is helpful if professionals can be ready to advise their clients in preparing for, and even to attend when necessary, the assessments.

Charlie Callanan is a welfare rights adviser with over 16 years experience in the statutory and voluntary sectors.

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Comment: Frank comes to terms with some Brexit fallout

Community Living 

Community Living

— Autumn 2016

Frank comes to terms with some Brexit fallout

While I was trimming the front hedge, Rex, who has autism and learning disabilities, was talking over the garden gate to neighbour Henry, who doesn’t.

“What did you vote”? asked Rex, directly. “Leave.” said Henry.  “Leave?” said Rex, “but the pound fell”. “’Appen,” said Henry. “Prices’ll go up,” said Rex “Appen,” said Henry. “The economy’ll go down,” said Rex. “Appen,” said Henry. “People ‘ll lose their jobs. The NHS’ll be cut. The social services’ll be cut. Pensions’ll..” said Rex, speeding up  “Appen,” said Henry, unmoved.

“Why did you vote leave?” asked Rex.

I stopped snipping privet and leaned closer to Henry’s side of the hedge, keen not to miss the big reveal. Henry raised his voice, doubtless above an imaginary bugle. “To get my country back,” he declared, triumphantly.

Rex searched the air around Henry’s smug mug looking for Easy Read clues. “What does that mean?” asked Rex, eventually. “You wouldn’t understand lad, you wouldn’t understand,” said Henry, patting Rex on the arm, gazing mistily into the far off blue of an English sky, the same one that Rex and I were also standing under, the same one that was there yesterday and today, the 24th June.

I slatted the shears into my ornate shingle in disgust and harrumphed pointedly up the garden path.

I festered on the sofa, embroidering my despair until wife laid into me. “No Frank. You are not working up an argument that 52 per cent of the voting public would fail a Mental Capacity Act assessment. That is sour grapes gone bananas”.

Day after I was still festering. “People with learning disabilities are always having their mental capacity questioned. Why not question the mental capacity of 17 million people without learning disabilities?” I said rhetorically, regaling a Remain mini cab driver with my grape-turned-banana story. “Rex weighed up the pros and cons of his decision; Henry didn’t. Rex thought about the consequences; Henry didn’t”.

Warming to my own story, I got onto the sneering corollary. “Got my country back? Racist strapline for bigoted Brexiteers”. With no overture, driver went ballistic. Turned out he’d toyed with a Leave vote. Turned out he hadn’t got a racist bone in his body.  Turned out I was as bad as all the other elitist Remainers who called it a ‘no brainer’, who didn’t listen, who thought they knew best. Turned out, if Brexit causes mayhem, it is on me because I am a “smag bustard” (sic).

Chastened, the day after the day after, I decided to make my peace with Henry.  “Eh up ‘Enry” I said. “Eh up Frank” said Henry. Truce duly called, I sat in my deck chair while Henry turned back to pruning his roses, his bald pate rocking from side to side in time to Rule Britannia, which he was now humming.  I picked up The Ladybird Book of Mindfulness, thumbed it distractedly, picked a page at random. It read “Sometimes life can be too noisy. Try not speaking for a while. Let people know what you want with a smile or a frown or by throwing your keys at the back of their head”.

 

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Squaring the circle for vulnerable people

Community Living 

Community Living

— Summer 2016

Volunteers are making a real difference, says Sarah Reilly

Despite the shock and horror of Winterbourne View there are still thousands of service users miles away from the inner London boroughs with accountability. These people are some of the most vulnerable members of our society but most receive only one statutory visit a year, often by a duty social worker who knows no more about them than what they read in the previous review.

As some of you know from my previous Community Living articles*, Circles of Protection (CoP) began in 2013 as a two-year pilot between Islington Council and The Elfrida Society. The intention of the project was to recruit local volunteers to match with vulnerable people with learning disabilities living in residential care out of borough. Their role for the people they are matched with is to create a relationship not defined by pay, to improve their quality of life and be their eyes and ears and voice.

When I came into post in June 2014, there was one lonely but loyal volunteer. In May 2016 the team of CoP volunteer befrienders and advocates came to The Elfrida Society from around the country, to meet each other for the first time, to share learning and experience, and a meal. As I looked at everyone sitting around the table I could see how well the model works. But I am jumping ahead.

Holding my nerve

Following the two year pilot The Elfrida Society was granted an extension for a year, this came to an end in March 2016. Working with uncertainty is difficult, but as the deadline approached I held my nerve and continued to recruit volunteers. I needed to prove to the Islington commissioners that the CoP model works and was worth paying for. My monitoring officer was thorough and demanding, she believed in the work. I am extremely grateful to her as Islington Council has granted The Elfrida Society a CoP contract for the next four years.

Recruiting volunteers from a geographical distance, when you have no local knowledge or contacts is not easy; neither is finding people who have the time as well as the humanity to make a relationship with a person with complex needs. Most of the service users referred to CoP are non-verbal, on the autism spectrum, and have mental health issues as well as profound learning disabilities; most have spent their lives in institutions

 

The power of advocacy

You may remember Jack Brown, I wrote about him in Community Living Volume 29. Jack was in a wheelchair with no way of communicating his needs. By doing a quick drawing of mood faces I found he could read an image; the home manager was amazed. I asked her to create a bespoke communication passport; the picture Jack pointed to most often was the cup of tea. Sadly Jack died recently but when he was in hospital his befriender brought him photographs of London in the 1930s. He loved the photograph of a London bus; when his befriender left he was still clutching it with a broad smile on his face.

While writing this article I received an email from Nerys, a CoP befriender/advocate in Sussex; Nerys is concerned because Kathy, who she had befriended, recently had her molars removed and the staff informed Nerys that unless there are complications, the dentist had finished his work. Kathy is 66; as Nerys says, surely she has a right to dentures so she can chew her food properly, as well as for cosmetic considerations. Kathy has the communication skills and capacity to make this decision, but no one asked her. For many years Kathy had to share a toothbrush with other ‘patients’ in the long-stay hospital. We have progressed to providing people in residential care with their own toothbrushes but in some cases we seem not to have progressed a much further. Nerys and I are on the case; we may need support from Kathy’s social worker but if Kathy wants dentures, Kathy shall have them.

Mark is a new CoP advocate; he is retired but was the keyworker for Nathaniel for eight years. Nathaniel, who has cerebral palsy, is a big man and leans heavily to one side of his wheelchair, making his condition worse. He has been waiting for an appointment with the wheelchair service for a long time. Mark understands health and social care; he also understands Nathaniel’s needs. Nathaniel has now been assessed for a new wheelchair to be provided with extra support, as well as a table attachment for mealtimes. A meeting to look at options for a ‘soft chair’ for Nathaniel has also been agreed. Well done, Mark.

I’ve worked in advocacy for 15 years. CoP is one of the most useful projects I have been involved with. It is a creative and innovative application of the advocacy principle. Sadly, it is unique; other London boroughs have been interested in the model but have yet to develop this service.

Some of the CoP achievements are profound and include reductions in medications and improved safeguarding. Other successes may be considered mere details but for most of us it is the small things that make a difference to our lives; and when our lives are restricted, by illness, age or disability, they make a big impact.

Sarah Reilly is Co-ordinator of the Elfrida Society’s Circles of Protection Project. All names have been changed.

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Defining a spectrum

Community Living 

Community Living

— Summer 2016

Following the birth of his son Timothy in 1956,Michael Geoffrey Baron became a founder member in 1962 of what would become the National Autistic Society. Here he reflects on the early struggles, the huge changes that have come about since, and the challenges that face a new generation of parents in tough times.

We were a young couple and Timothy was our first born child. His initial development after a forceps delivery appeared normal. However my wife, who was more familiar with babies, was concerned at the way he seemed to withdraw from her touch. He walked suddenly at twelve months and toilet-trained early but infant babble did not become infantile speech, and ceased altogether when his sister was born a few months later.

Then Timothy developed encephalitis and although he recovered after a few months, I now suspect the seeds of the behaviours, now described as autistic, began at the very beginning. Perhaps it was the brusque forceps delivery (an injury to his brain), perhaps it was the inflammation of encephalitis, perhaps there were genes present in his very DNA that predisposed him to autism; we will never know and always wonder.

And so it was that in the summer of 1961, faced with our son who did not speak and who rarely slept, we sought the opinion of a respected paediatrician. First, he said his disordered speech, agitated behaviour and limited comprehension was juvenile schizophrenia but after a visit to the USA, he pronounced it was childhood psychosis. In those days that was the accepted label among the psychiatric fraternity.

Where to turn?

It was the early days of the organisation we now know as Mencap. Judy Fryd, one of its founding parents, organised a conference in September 1961; its subject was ‘The Psychotic Child’.  We forget today, surrounded as we are by the publicity machines of autism organisations like the NAS,  Autistica, Ambitious About Autism, Autism Independent UK, Child Autism UK and others that back in the summer of 1961, there was only the small Mencap organisation and the quirky but expert Camphill (Rudolf Steiner) Movement.

Medical bias

The Mencap conference hosted the luminaries of the day, now almost forgotten. There was a heavily medical bias, with Doctors O’Gorman, Creak, Soddy, Stroh, O’Connor. Among the speakers there was one teacher, Margaret Chojko, and one parent, Judy Fryd herself. Later the same year a TV programme chaired by Dr Gerard Vaughan, who later became a Tory MP, introduced to the UK four parents and their puzzling, disturbed children  all labeled ‘psychotic’.

My wife and I watched the programme. Their kids were just like Timothy. I rang Mencap, got the conference transcript, joined as a member, and volunteered my services. At the time I was a solicitor of five years standing. At a meeting in Mencap’s Holborn office there were a few parents; I met Lorna Wing, then a young psychiatrist  at the Maudsley Hospital, Helen Allison, a vigorous American, Oxford-educated and with a background in the CIA ; they were both married to doctors. And I met the indomitable Peggie Everard, with her experience in marketing. All good people who had the shared aim of starting an organisation to help their autistic children.

In the early 1960s Lorna Wing was at the start of a brilliant career that would lead to her describing autism as a spectrum. She would delineate a triad of impairments as the key criteria for diagnosis, which still holds today. Lorna was to become the UK’s intellectual guru of autism. Helen and Peggie were already in touch with other London parents.

No place at Mencap’s top table

It seemed that Mencap had not got a place for us at their top table; all middle class, university graduates, professionals, with children who behaved unusually but did not have the classic look of learning disabled children. We agreed to meet again. Our kids were holding on, just, at tolerant nursery schools; our instincts were to reject the medical model and the apartheid-like division into the ineducable and the educable; one track to the training centre or the sub-normality hospital, the other track leading to some ideal school. We believed that it was not a matter of children who could not be taught; it was instead a matter of teachers who had not yet acquired the skills to enter the world those children lived in and so bring them out into the sunlit uplands of normality.

We felt and hoped passionately that our children were in a phase of infantile disorder that would pass, if only…  So when a slightly larger group of parents met in March 1962 at a house in North London, and quickly decided to form a new charitable organisation, our preferred title was the Society for Psychotic Children. We did not for a moment believe, or want to believe, that the children would grow into autistic adults and that the condition was a life sentence. By June that year the founding group had gathered together more parents, mostly from London and the Home Counties, and the charity was formed.

The title of the new charity was provocative. Were our children – in the accepted meaning of ‘psychotic’  – mad ? This title was at variance with our firm belief in special education.  Lorna Wing by then had discovered and studied the work of Leo Kanner in Baltimore (USA) who coined the term ‘autism’. The Nine Points (of diagnostic markers) adumbrated by Mildred Creak at Great Ormond Street Hospital was the guide which granted admission to the ranks of affected children, an entrance examination which might save a child from long-stay hospital or training centre.

Looking back I think we had a snobbish desire to differentiate ‘our’ kids from those for whom Mencap catered.  The Society for Psychotic Children (which began as an affiliate of the latter and was also associated with the Invalid Children’s Aid Association), abandoned the affiliation to Mencap. Under the inspired guidance of Lorna Wing we also dropped ‘psychotic’ and replaced it with the more neutral, Kanner-derived label: autistic.

Prescient optimism

What is today the UK’s largest autism charity was reborn. And with remarkable and prescient optimism Helen Allison and I drafted a paper dubbed ‘The Project’. We called for a special school for autistic children alone, the training of teachers, and an advice and information service for parents. Our numbers were not large. Two years after the charity’s foundation, the Middlesex survey carried out by Victor Lotter, with its diagnostic markers based on the Creak Nine Points, only yielded an incidence of four cases of autism per 10,000 children. Today in the UK we settle for one in 100; and in the USA, with its incredible eagerness for diagnosis, one recent statistic claims the incidence at one in 45 among males.

Concerns still with us

We did not know, in March 1962, that inputting ‘autism’ on Google  would lead to millions of hits in 2016. Or that in the UK there would be some 16 autism charities and hundreds of autism websites; or numerous schools claiming their credentials in ASD education. A handful of driven parents just did what was necessary  for their children at the time. But today, save for a handful of oldies, those parents are dead, their children are still disabled, and now middle-aged. One hopes that the future, with its increasing incidence of the disorder of ‘autism’ will be kind to them, but today who can be sure?

The concerns we had ,and which devastated so many families, about diagnosis and prognosis, early intervention, public awareness, focused and informed education, placement, training of teachers, work opportunities – I name but a few – are still with us today against a backdrop of austerity in the shrinking state. And if I put the A-word in quotation marks in the preceding paragraph, it is because more than half a century on, as a parent and observer, I am unsure that the label of ‘autism’ is right: the spectrum of disorders is more like a constellation of brain disorders that are assumed to encompass men and women who are just different or exceptional, and their peers who are severely intellectually disabled . And many too have co-morbidities which we did not see back in 1962. Is one word the last word?  But that is for another generation of parents and ‘autistic’ people to argue over as science brings us closer to the knowledge of causation.

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Siberia – where parents take the lead

Community Living 

Community Living

— Summer 2016

In 2015 Melissa Daly an education officer at the Birmingham Repertory Theatre and Richard Hayhow, Director of the Open Theatre Company, travelled to Krasnayorks in Siberia to share ideas on theatre practice at an international conference. They discovered a land where, in the absence of provided services, parents take the lead. Melissa takes up the story…

I have been working closely with Richard for some time now and was delighted to go and work with him at an international conference in Krasnayorsk in Siberia. I work as an Education Officer for The Birmingham Repertory Theatre with a focus on working with young people with learning disabilities  This includes delivering drama sessions in Mayfield Special School with young people who have a range of learning disabilties. After 6 months in the school, I started to feel slightly out of my depth and was concerned that many of the drama activities were not accessible for the young people I was working with. This sparked my journey to discover a new way of working which could engage these young people.

For almost two decades, Richard Hayhow has been developing theatre with young people and children with learning disabilities, within the education sector and beyond. The practice, which we have labelled ‘mimetics’, focuses upon non-verbal, physical action and interaction as the heart of all human communication and the leveller across differences. Much of the work undertaken within current theatre practice is heavily verbal and often conceptual at its heart. By its very nature it tends to exclude young people with learning disabilities who rely on non-verbal means of communication.

This experimental psycho-physical actor-training approach has been adapted to enable a genuinely collaborative approach to communicating and making theatre with young people with learning disabilities. Having been trained by Richard in this practice, this trip to Siberia was a once in a lifetime opportunity to further develop my skills and to explore the education system in another country.

Central role of parents

We had the pleasure of working with a number of young people throughout our stay in Krasnoyarsk as well as presenting at the conference. What struck me most about the education system in Siberia was the lack of special educational provision. As a result of this, parents had been inspired to play a central role in creating more suitable opportunities for their young people.

We visited an organisation called ‘Open Hearts’ to deliver a drama workshop and it was wonderful to see a group of parents working so closely together to engage young people with learning disabilities. This project is fantastic but it was quite disconcerting that only a small number of schools and young people would benefit from it. I was very surprised that this project seemed to be driven by the parents and not necessarily by the education authorities. This was also apparent after a visit to Raduga Rehabilitation Centre, Light of Hope and MumiDom Centre. A highlight of the week would have to be our trip to Social Homestead “Dobraya” where we were welcomed with fantastic hospitality and lots of snow! The facilities were impressive (they even had an outdoor theatre) and I could only imagine the wonderful vocational activities young people could take part in here. Once again, it appeared that this had been set up and run by a family of a young boy with autism.

Parent engagement

After just a few days in Krasnoyarsk, I started to consider how different this was from our set up in the UK. We have a much more developed special education system but do we have the same level of parent engagement? I wondered how we could enhance our provision by engaging with parents more and encouraging them to take a more active role in the work we do with their young people.

The conference itself was very informative and it was encouraging to hear that the Russian Education Minister is planning a special education system to enhance the learning and development of young people with learning disabilities in Russia. A highlight was Richard successfully encouraging 500 delegates to take part in a mirroring exercise as we presented our work – a wonderful moment!

On our final day we delivered a teacher-training session for around 40 adults and a small group of young people. Their enthusiasm and openness to the work was overwhelming and the atmosphere electric.

It would have been great to have had more time for conversations with the parents who were creating these opportunities and making a real difference for these young people.

I left Siberia inspired at how we had managed to share our theatre practice with so many people despite the fact we could not hold a conversation with most of them. If we are to continue to create opportunities for young people with learning disabilities we must look outside the work we are doing individually and share our practice as widely as possible. Krasnoyarsk is a beautiful place and we met some wonderful people I hope to meet again one day.

For more information on the Open Hearts Project in Siberia:

http://healthprom.org/where-we-work/russian-federation/

For Open Theatre Company see http://www.opentheatre.co.uk/

Birmingham Rep is at http://www.birmingham-rep.co.uk/