In the context of disability care is an inadequate word. It implies that someone is a passive recipient rather than an active participant in a process to help them live their life.
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.
Source: Unjustified Imprisonment | Publications by date | Library | The Centre for Welfare Reform