The detention of young people with autism and complex needs in hospital settings where they are locked up all day, every day is nothing short of a scandal. Moreover it is a scandal arising out of lazy thinking and institutional indifference to the needs of citizens who happen to have an intellectual disability or autism or both – but who cannot make their voices heard.
Despite all the talk of advocacy and the rights of people with a learning disability – backed up by reams of legislation – we are shocked out of our complacency to discover that young people, teenagers, are being held in their personal, private hell because in 2018 we are not geared up to give them the support they need.
Health Secretary Matt Hancock – in response to recent heartbreaking revelations that have echoes of Victorian asylums – has asked the Care Quality Commission (CQC) to investigate. We have been here before. Nevertheless it’s a welcome first move. And it may bring some urgently-needed relief to these young people and their families. I dearly hope so. The CQC after all is charged with regulating our health and care system.
The move follows a public outcry after a father successfully challenged a local authority’s bid to secure a gagging order that would stop him from speaking out about his daughter’s treatment in a psychiatric unit. That in itself makes the mind boggle. We are not the Soviet Union.
Bethany, 17, who has autism and extreme anxiety, has been locked in a seclusion room for almost two years. She is being restrained and she communicates through a hatch. Her father Jeremy, 50, had been fighting an injunction sought by Walsall Council banning him from discussing her treatment. The council claimed it wanted to protect Bethany by shielding her identity. We might ask: protect her from whom?
Bethany is not alone. There are it seems many such cases, signs of a system that blames its failure to provide the right support for people who have complex needs on what they describe as their ‘challenging behaviour’ which, by and large, is a response to a sledge-hammer approach.
A CQC review will not address the wider issues
This admittedly is a complex problem. But I question whether the CQC is the right body to address it. The regulator is not a body known for its ability to see much beyond the box-ticking approach. It does not on the whole concern itself with ethos: the underlying culture of how a provision is run. Despite its remit it is essentially a nuts and bolts organisation, a policeman there to check on providers from schools to care homes.
The CQC deals with what is there. Not what should be there. It does not make or advise on policy. It would be most unusual were it to turn round and say “This system that we have been overseeing isn’t working”. It is not in any case within its terms of reference. This is not the place to discuss the CQC’s failings. Suffice it to say that it’s an organisation that, in my personal experience, too often employs people who have little in-depth knowledge or understanding of the nature (as opposed to the process) of care.
Compliance is not the same as care
Nobody pretends that supporting people with complex and sometimes volatile behaviour is easy. It takes time, skill, the right training, the right setting and above all else continuity.
But compliance (by the person being supported) – doing what they’re told – is not the same as care. So when Bethany, in her father’s words, ‘throws a wobbler’, instead of using strategies to engage her, she is stripped, among other things of her dignity as a human being, put in special clothing and locked up.
Those of us with loved ones with special needs who occasionally throw wobblers, come to realise over time that the answer is not to shut them up but to find a way of communicating with them. This is portrayed with great empathy in the current BBC4 series starring David Tennant There She Goes.
Ever case is different. As the saying goes “If you’ve met one person with autism – you’ve met one person with autism”. There are no easy, off-the-shelf answers. Carers need to see beyond the disability, look past the symptoms to the underlying cause. When the ‘challenging behaviour’ of young people like Bethany leads to restraint, medication and confinement it fuels their frustration and unhappiness. It’s a vicious circle inspired by a system that utterly fails – or worse does not ty – to understand them and their needs.
I have another fundamental concern. This is the abiding confusion in the mind of many (including our Prime Minister at the last election) between mental health and an intellectual or learning disability. The first is an illness. The second a life-long condition that requires different skills and an entirely different approach.
Bethany is being held – there is no other word for it – at St Andrews Healthcare psychiatric unit in Northampton. Psychiatric units are, to state the obvious, for people with mental health problems. Sometimes the two – learning disability and mental health – overlap. But Bethany’s condition is a complex form of autism underscored by anxiety which, as those of us with loved ones on the spectrum know, is often a by-product, a symptom of ASD. But it is not the cause. Autism cannot (yet) be cured. We need strategies that help people like Bethany manage their frustrations. That requires a specialist approach backed by the political will to bring about a step-change.
I have argued consistently that lumping health and care (or at any rate care and support for people with a disability) is the wrong thing to do. In the same way that placing people like Bethany in a hospital, where the priorities and the focus are different, is the wrong thing to do.
One real advance would be to take the job of Disabilities Minister (a junior posting) away from the Department for Works and Pensions and give it its own department. The job is now part of the DWP because getting people with a disability into work is seen as ‘the’ answer to achieving inclusion. This is a narrow, one-size-fits-all approach.
A Secretary of State for Disability
Creating a new Secretary of State for Disability with a seat in the cabinet, like France, would be send a strong signal that the almost 10 million people with a disability in the UK (of whom an estimated 1.5 million have an intellectual disability) are a real priority. It would also ensure that disability policy doesn’t play second fiddle to health.
Cases like Bethany’s have thrown up a gaping hole in our care system for people whose needs are too complex to be met with a compliance and control approach. It is a massive failure of imagination reinforced by a long period of economic austerity that makes it difficult to find the right people, with the right training to take on a job that requires skill, empathy and commitment.
So what should be done? First people with complex needs should be in a setting where those who support them have the time and skill to understand them. Second they need to be helped and not punished, helped to lead lives that will give them a sense of stability and fulfilment. This can be in the community, their own homes or in a communal setting like Camphill, L’Arche or Shared Lives. Or some entirely new tailor-made setting.
Third there must be greater involvement of the people themselves and their families. Parents, guardians and siblings must be an integral part of devising a fresh approach to care plans. Providers, local authorities and the CQC all-too-often either keep families at arms length or pay lip-service to their views. Which, when you consider that these are the people who know most about their loved ones, is plain daft as well as being a waste of a precious resource. People like Jeremy often hold the key to unravelling the mystery.
Let us see what if anything the CQC comes up with and whether it’s more than just a sticking-plaster solution. But we should be clear: the way we do things now is not fit for purpose, not anytime and certainly not in the 21st century.
In the context of disability – as opposed to old age or chronic illness- care is an inadequate word. It implies caring for someone who is a passive recipient rather than working with someone to help them find their feet and move forward.
There is an element of them and us in the approach that belittles the other person. Listening – genuinely listening without judging- so we can decipher what people mean is the best route to finding ways of making them feel safe, reduce their anxiety and make progress. It is slow, painstaking work that must take its cue from the individual.
The need to rethink how people with a learning disability are supported was heavily underscored by Professor Sir Michael Marmot from the Institute of Health Equity at University College London. In a follow-up to his 2010 report on the health chances of young people with learning disabilities Professor Marmot warned that up to 40% of people with learning difficulties were not diagnosed in childhood.
He has now concluded that as a result of this failure and the poverty and reduced life-chances that come with the consequences of inequality and austerity on average people with a learning difficulty die 15-20 years earlier than the rest of the population mainly due to poor housing, poverty, isolation and bullying.
We need real reform based on a degree of respect and dignity for people with learning difficulties and autism that just isn’t there. We need, in a word, to re-imagine how people with complex needs can best be supported. Bethany doesn’t just need a service. She needs a life.
Alliance for Camphill Steering Group