Learning Disability Today
Supporting professionals working in learning disability and autism services

Learning Disability Census shows yet again why reform of institutions is urgently needed

Dan Parton cutThe latest figures from the Learning Disability Census paint a grim picture of what life is like for many people with learning disabilities who live in hospital-style institutions. Once again, they highlight why reform is urgently needed.

It is nearly three years now since the Panorama documentary put a spotlight on the abuse that residents at the former Winterbourne View hospital near Bristol were experiencing. But it seems that, despite many promises of reform from government and the sector alike, little has changed for the people who live in assessment and treatment units.

Whenever I have written on this topic since then, ‘shocking’ is the main adjective I have tended to use , but it still seems the most apposite to describe the latest report on data from the Learning Disability Census, by the Health and Social Care Information Centre (HSCIC) on what life in assessment and treatment units is like for many patients. ‘Saddening’, ‘frustrating’ and ‘unacceptable’ are other words that spring to mind. I’m sure you can think of others.

For instance, the HSCIC found that more than two thirds of people in assessment and treatment units had been given anti-psychotic medication in the lead-up to the Census, and the vast majority of those had been given such drugs regularly. It also reported that more than half of residents had been the subject of at least one incident involving self-harm, an accident, physical assault, hands-on restraint or seclusion during the three months preceding the Census.

Hardly seems to be person-centred, individualised care and support of the sort that gives people with learning disabilities the opportunity to live their life as they want, does it?

Looking at these figures, it is hardly surprising that people who go into assessment and treatment units often come out – eventually, as most stay in such a place for more than year – in no better a state than when they were admitted, and in some cases, with new or different behaviours that challenge.

The report also revealed the huge amount it costs to keep people with learning disabilities in such institutions. While the majority of places cost between £1,500 and £4,499 per week, more than 10% cost in excess of £4,500 – that’s at least £234,000 per year.

That is a huge figure to accommodate someone in a place that often seems to deliver care that only meets the most basic standards – remember the Care Quality Commission report in the wake of Winterbourne View found that nearly half of the institutions it had reviewed didn’t meet all the minimum standards.

There are plenty of ways that £234,000 could be better spent that would provide better outcomes for the people concerned. This is one of the most frustrating things – we know that good, personalised care in community settings is the best thing for people with learning disabilities. We also know such care often costs significantly less than an assessment and treatment centre. At a time of public expenditure cuts, the way forward seems a no-brainer, but one that commissioners just haven’t taken on board.

Learning disability charities Mencap and the Challenging Behaviour Foundation have described the findings as “a disgrace” and called for urgent action. “It is not enough for the government to say it should not be happening,” said the charities’ respective chief executives, Jan Tregelles and Vivien Cooper, in a joint statement. “We demand that the government takes urgent action and we expect to see immediate and real progress.”

You can’t argue with what they are saying – indeed, they and many others in the sector have been saying roughly the same thing for years – but I wonder whether their call will be heeded.

The December 2012 Concordat was supposed to provide the necessary stick to get providers, commissioners and others to make the changes required in the sector, and to see more people moved out of institutions and back into the community, but as the June 1 deadline approaches, judging by the data from the Census it seems that little progress has been made towards those goals.

Perhaps the impetus isn’t there because this only affects a tiny minority of the population and is, to some, a difficult problem to solve. But that should be no excuse, especially as we know what good care and support looks like: if some areas and providers can do it, there is no reason why everyone can’t do it.

Fundamentally, if we claim to be a caring society, nobody should have to endure such conditions, and we should give everyone the opportunity to live life as they want to. The current situation simply has to change.

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