One of my daughters, who is 30, has autism and learning difficulties severe enough to require support in most things she does. Left alone she would end up with malnutrition. Left alone for long enough, she would die. She’s chatty and funny. She throws the occasional wobbler when things get too much (or displays, in that shallow and misleading description, ‘challenging behaviour’). She can run her bath and dress. But she can’t cross the road without help and she can’t do something as simple as cook baked beans without supervision or go to the pub or the corner shop.
The prevailing view – expressed to me a couple of years ago by a parliamentary lobbyist for Mencap, the learning disability charity- is that, no matter how complex her needs or how vulnerable she may be, she should be living in a ‘normal house, in a normal street, in a normal suburb’ with care workers coming in to give her the support she needs to lead that ‘normal’ life. Anything else would be a betrayal of her human rights and the struggle for inclusion.
For some, lucky enough to be able to cope, this kind of approach works. But my daughter would be, literally, on life-support, entirely dependent on (often rotating agency) care workers whom she would never real get to know or, more important, would get to know her. Perversely the very freedom intended for her would be severely limited. She wouldn’t be able to step out of her front door without help.
Also the stringent etiquette of care, as a result of scandals like Winterbourne, now demands an exclusively professional relationship so they couldn’t be friends. A hug becomes a risk to be calculated as opposed to a natural, evolutionary response to another human being’s need for solace and affirmation. She would most likely become lonely and isolated, almost certainly depressed and would resume self-harming. She doesn’t need pick n’mix services. She needs a life.
We need inclusion but we also need to help people now
The world, to be clear, must change so that people with a disability can live on a level playing field. This is a fundamental obligation we all have and it must be pursued from the top down and from the grassroots up, relentlessly day in day out. But this is a work in progress. In the here and now the aim must be to give people the support they need to live the life they want in whatever setting suits them best.
An ideology that insists on a single definition of independent living has huge and all-too-often negative influence over how people with learning disabilities are supported. And while the impulse comes from a good place – the desire to advance inclusion after decades of prejudice and institutional abuse – it contributes to the erosion of the very thing it is meant to protect: treating people, irrespective of their abilities, as individuals with a free will and free choice. This one-size-fits-all version of personalisation that depends mostly on a transactional relationship with the state – often outsourced in a competitive tendering process to private sector companies whose ethos is profit – is especially vulnerable to cuts.
In fact my daughter lives, happy and fulfilled, in a Camphill community (one of over 100 in 20 countries), a ‘campus’ setting as the Care Quality Commission (CQC) would disapprovingly have it. She lives in a house with people of differing abilities, in other words people, like her, who need support, and others (co-workers) who share their lives with her while providing that support. These people are not transient. They are there for the long term. They are (also) her friends. This matters because if our sole connection with someone is defined by their disability we cannot see their true nature and their real needs.
Her co-housing community also known as an intentional community, is her home. She has a tenancy. She has a say in who joins the community and how it’s run. She has the freedom to walk around her ‘village’ safely. She doesn’t need someone to let her out of her front door. She can pop across to the house on the other side of the big oak tree to see her mates without being run over. She works on-site walking to her workshops, has a rich cultural life, friends, real friends, she shops in town, travels, goes to the pub up the road, and to shows in London and spends several weeks a year with her friends and family. She’s very lucky.
And yet her choice – strongly influenced by my judgement – is frowned on by people who in other circumstance I would regard as like-minded. Not long ago I had a stimulating Skype conversation with a bright, wheelchair-bound young researcher with cerebral palsy. He had recorded a powerful video for the Equality and Human Rights Commission’s (EHRC) report on disability in England. I really enjoyed our conversation and I wanted him to do a video for our website describing his experiences. Next morning, he sent me an email saying he was sorry but he couldn’t work with me because he felt Camphill communities and similar organisations breached people’s human rights. He hoped I understood.
I’ve had similar exchanges with, among others, an excellent journalist whose work exposes the failures of our care system in general and the frankly dysfunctional Department of Works and Pensions (DWP) in particular. But he won’t even contemplate visiting one of our communities to see for himself because he suggests they’re a form of apartheid so, like pre-Mandela South Africa, he believes the right response is to boycott them. ‘Segregating’, as he put it, someone from the mainstream, however exceptional their needs, is morally wrong because it devalues them as human beings and weakens the broader effort to create a level playing field. I stand four-square behind the fight for inclusion but I also believe that what’s best for my daughter is what works for her. She is not a pawn in an ideological battle.
This ideology is baked into our general approach to care and guides bodies like the CQC and local authority commissioners in determining what is best for people with autism and learning disabilities and, crucially, funding.
Attitudes hardened considerably after the exposure by the BBC’s Panorama programme about the horrendous abuses by support workers at Winterbourne View in 2011. The authorities went into overdrive: all services were inspected; some were closed; new guidelines were issued; the government made a commitment to close long-term ATU’s like Winterbourne and move people back into the community. a commitment however which seven years later has not been met. Safeguarding, understandably, became the watchword.
From Bedlam to Winterbourne and beyond
Let us take a step back. Society’s treatment of people with a learning disability has been – and still is too often – appalling which is why inclusion, acceptance and human rights have rightly become the touchstones of change enshrined in primary legislation such as the Care Act (2014) and the Universal Declaration of Human Rights.
Right up to the middle of the 20th century places where people with a learning disability were locked up because society regarded them as less than human, were prisons dressed up as charity. Famously London’s Bethlehem Hospital, rebuilt in 1676 and known as Bedlam, was the most opulent mental asylum in the world, a tourist landmark like Westminster Abbey, at least on the outside. Inside it was hell. ‘Lunaticks’ as they were known slept on straw, chained and were often whipped dying lonely, miserable deaths.
One of the consequences of this backstory is that models of care that do not conform to the post-Winterbourne view of ‘a normal’ life, such as Camphill communities, tend to be tarred with the same brush. A community, where people of varying abilities choose to live with each other, is not a hospital and is different from a care home although that’s how it’s pigeon-holed. But this cuts little ice with the ideologues.
As a distinguished public policy lawyer said to me: “The fact that Camphill communities are often located in rural areas – ‘out there’- and not in the proverbial ‘normal suburb’ is grounds enough for suspicion”. But the most harmful misconception arising out Winterbourne is the conflation of mental health problems and learning disability. One of the biggest strategic mistakes this has government has made is to fold care (and therefore disability) into a giant ministry of Health. It’s easier to lump the two together because it offers, supposedly, economies of scale and joined-up records in an overstretched welfare system. But it conflates two largely different disciplines making it even harder especially in times of austerity, to develop progressive and imaginative policies for people with complex needs.
This is the fatal flaw at the heart of the system. Without wishing to be overly prescriptive it would be fair to say that the two issues – mental health and learning disability – are hugely different. Sometimes they overlap. But someone with a mental health problem has an illness which may or may not be long-term. Someone with a learning disability on the other hand is not ill. At least not any more often than you or I. You can’t cure autism or the effects of cerebral palsy. These are life-long conditions that require a quite different, essentially social approach, training and skills.
Tim Davies, the CEO of Camphill Milton Keynes, who has decades of experience in the care sector, put it like this: “Most mental health support is about engaging with a person to understand their experiences – such as identifying triggers and learnt responses and creating “new” coping mechanisms. Talking treatments are hugely valuable in supporting mental health wellbeing but a person with an autism diagnosis would find this just pointless and unhelpful. LD support is more about taking a walk in another person’s world and interpreting it on their behalf. It gets even starker when you put it in the context of the person.
‘We changed his shoes and all was well’
“I remember working with a young person who would regularly bite, head bang, kick and punch people. There seemed to be no explanation to the behaviour. A Mental Health response to this would be all about identifying emotional triggers, possibly with a bit of anti-anxiety medication to smooth the edges. In fact, his sensory sensitivity was creating sensations that he couldn’t process and understand, and his response was immediate and direct. We changed his shoes, and all was well with the world again. That’s a simplified example but “personalised support” is at the heart of it. “
All this may sound obvious, but it isn’t reflected in how we do things. The result is inadequate support, neglect and abuse as the recent horror stories revealed by the journalist Ian Birrel of young people with autism being locked up for years in ATUs has shown. The very name Assessment and Treatment Unitbetrays the confusion at the heart of the system.
Locking them up, restraining them or using drugs routinely is to see the problem through the wrong end of the telescope. And it can end in tragedy, as in the case of Bristol teenager Oliver McGowan who died in 2016 after being given anti-psychotic drugs in hospital to control seizures. The doctors appeared not know he had autism. They thought he was manic. Yet this approach remains widespread.
As the National Autistic Society (NAS) points out: “In 2015, the Government and NHS England launched Transforming Care which made an important promise to thousands of people who are autistic or have a learning disability: they would make sure the right services were available in the local community, so people were not stuck in inappropriate in-patient hospitals. But since then the number of autistic people living in these units has actually increased by almost 40%.” We continue to fail our most vulnerable citizens not only through a lack of resources but also because a lack of imagination.
Supporting people with complex learning difficulties or certain kinds of autism is not easy. Especially for families confronted with behaviour they don’t understand and can’t manage. There was a time when my daughter would scream or throw herself to the floor or hurl a plate of food across the room. Faced with situations they can’t deal with some people with autism can be violent especially in crowded or noisy places. They are trapped in a world of emotional overload, fear and pain. But their behaviour is not an illness. It’s is their response to the world around them. See A Healthy Way of Life evidence to Parliament by Dr Marcus Van Dam.
To take just one example, since 2016, the same year that Oliver died, the Mersey Care NHS Trust has recorded no less than 3,369 case of physical restraint in its ATUs. Challenged its Chief Executive said that while this wasn’t good enough they were on a ‘journey’. This suggests to me that she doesn’t understand that the trust is travelling in the wrong direction.
How far have we really come? Not as far as we think we have. Despite our good intentions, young people with autism still languish for years in secure ATUs because their families can’t cope and the authorities don’t know what else to do with them. We can draw a straight line from Bedlam to Winterbourne and into the present. We have yet to confront the essence of the challenge.
Creating a world where individual citizens with a learning difficulty can thrive requires time, patience, careful observation and persistence. As Tim Davies says: “Person-centred care involves genuinely knowing the person and not simply treating the symptoms they display.” There isn’t a quick fix.
This failure to draw a clear distinction between a medical and a social approach also encourages some false assumptions. One is that anything that doesn’t follow the so-called independent living model is inherently less safe and more restrictive. In fact more safeguarding incidents involving adult social care settings according to the CQC (43%) take place in people’s own homes than anywhere else. And while there is a sense in which my daughter’s liberty is deprived (and must be scrupulously and independently justified) she would have exactly the same restrictions possibly more if she lived elsewhere.
Then there is the ‘tick-box’ syndrome that drives bodies like the CQC to focus more on process than on people. The CQC is a huge bureaucracy with vast responsibilities ranging from inspecting NHS trusts to the care of people with a disability living in the community. At the top of its list of five ‘fundamental standards’ that providers must meet is a person-centred approach that is ‘tailored to you and meets your needs and preferences”. This is unattainable goal. What it actually means is that by policing a provider’s overall performance the CQC can ensure that someone’s care is person-centred. Which is not the same thing at all. Only in very rare circumstances does the CQC concern itself either with ethos or individuals and their care plans. They can’t. The task would be too vast. At best it’s an aspiration. The CQC far from being an army of experts is in reality a jack-of-all trades that suffers from the same flaws of an overworked and confused care system.
How the CQC fell into its own trap
This crucial weakness in the how the CQC delivers its remit became starkly apparent in a recent court case which drew scathing comments from the presiding judge. It involved a provider, Centurion Health Care, who wanted to expand the care it offers to people with autism and severe learning difficulties on its three-acre site outside Stokenchurch in Buckinghamshire.
What is especially striking, and consistent with the CQC’s mindset, is that much of its argument was based around technical building issues – was there a separate kitchen, where was the front door- and not, as the judge pointed out, the needs of the residents.
The CQC took exception to the plan arguing that it breached the CQC’s guidance set out in “Registering the Right Support (June 2017) which, in turn, is based on guidance produced by NHS England because the new facility would be adjacent to the existing one. The new services said the CQC should not be developed as part of a ‘campus-style’ development or ‘congregate’ setting because they are “separate from (local) communities and without access to the options, choices, dignity and independence that most people take for granted in their lives”. The proposal was initially turned down. Centurion appealed to a lower tribunal and lost.
It then appealed to a higher tribunal and this time it won. The court’s judgement of the CQC’s handling of the application goes to the heart of much of what is wrong with how we decide what is best for people who have a learning disability.
Judge Ian Robertson accepted that while the guidance issued following Winterbourne – in a word avoiding institutionalisation – was right, the CQC failed to look at the proposals holistically taking into account the needs of residents. The court, he said, found this “extremely hard to understand”.
The court also challenged the CQC’s blanket assertion that because the development was in a rural location, a mile outside the nearest village (much like my daughter’s) this meant the residents would be denied a ‘normal’ life. People had a fundamental right to choose where they lived. “Some people choose to live in cities, some in towns, some in villages and some in the country…If the CQC argument is followed this choice is denied to this group of service users.” The judge went on” Not all service users need or want to live within a town, city or village. What the proposal offers is life in the country. Given the sensory needs of many people with the disorders they cater for, the peace of a rural setting may meet their needs far better than the hustle and bustle of a town house.”
The CQC, said the judge, having failed to consider the needs of the particular service users had “fallen into the very trap that their own guidance warns against “We do not wish to be overly prescriptive and it is not our intention to create a ‘one size fits all approach”.
So there you have it. The perfect metaphor for what’s wrong with our care system. The statutory body whose job it is to see that providers are doing what’s best for people like my daughter is more concerned about whether a new facility has a separate kitchen and meets building regulations than whether the culture and the care meets her needs. Ethos is not within their remit.
We also have the absurd proposition that if a provision is in the country, it is by definition more likely to deprive a resident a ‘normal’ life. Which begs the question what is a ‘normal life? And who decides? The citizen or the state?
Time a cabinet minister for the disabled
The Winterbourne scandal was a salutary wake-up call. But it has resulted in a culture where keeping people safe (the CQC’s primary responsibility) is in danger of becoming the be-all and end-all, spawning more and more complex safeguarding policies that do little to enhance the quality and variety of life of people in care. It’s a balance of course and safety-first is a sensible priority. But taken to extremes this mantra tends to crush spontaneity and initiative, stifle innovation and restrict choice because providers are fearful of being caught in the arc light of Winterbourne’s aftermath.
It’s time for a radical overhaul of how we see citizens with learning disabilities and autism and where they stand in our order of priorities as a society. A good place to start would be to appoint a cabinet minister for disability, a heavyweight if one can be found, with the remit to reinvent a care system fit for the 21st century.
Alain Catzeflis Alliance for Camphill Steering Group