. . . all such institutions are unnatural, undesirable and very liable to abuse.

We should have as few of them as possible…’

Samuel Gridley Howe - American physician and philanthropist

For those of you not based in the UK I should just explain the meaning of this title. It arose from a disturbing report aired in 2012 by the BBC Panorama program on an investigation into a place called Winterbourne View, that showed staff physically and psychologically abusing people with learning disabilities. That scandal shocked the nation although, sadly, such things have happened time and again over the years - as they do in other countries.

In the wake of that scandal, the UK Government pledged to move all people being “inappropriately” cared for in assessment and treatment units (ATUs) into community care (the British policy of deinstitutionalization whereby people are placed in homes in their local community).

The target of June 2014 was not achieved and today it is said that somewhere between 2,500 and 3,000 people with learning disabilities and autism still live in institutions in England; with more people being admitted than are being allowed to go home.

Sir Stephen Bubb, author of an independent report published in November 2014, recommended that the National Health Service (NHS) should embark on an overhaul of care for people with learning disabilities so that residential institutions for people with learning disabilities shut.

The NHS broadly welcomed the report but said that a small number needed to remain open to provide inpatient beds for anyone with learning disabilities who had been detained under the Mental Health Act: as indeed they do.

As a report in The Independent newspaper told us Care minister Norman Lamb said that he welcomed “the thrust” of the report, saying:

“The horrors of Winterbourne View exposed serious failures in the care of people with learning disabilities and autism and this report makes clear commissioning needs to change radically if services are to improve . . .

. . . It is unacceptable for people with learning disabilities and autism to be left in institutions if they can live in their own home or in the community. I am going to consult on changing the law to speed up delivery of the Winterbourne View commitments - to see people living in the community wherever possible and able to challenge decisions about their care.”

Most people agree in principal that such a change is 'fundamental', as people with learning disabilities should be allowed to choose where they live. But is Community Care really a panacea for all the failings of the system? Playing devil's advocate for a moment I would suggest that, regardless of the setting in which it take place, the standard of care falls broadly into three main categories: good, bad and indifferent.

Yes, there are many places, of varying sizes, where the care given to the people who reside there is good (and on occasions) very good. Unfortunately though there are many other places where the standard of care falls short (sometimes 'far' short) of expectations. However before looking at the type of care as I shall in my next article, we first need to look carefully at the staffing of Community homes.

Obviously extremely careful vetting is needed for all staff who want to work most vulnerable people, because the ‘caring’ professions sometimes attract the wrong type of person. I am not talking here about paedophilia but rather about two particular types of people that I have met during my career.

One is the person who goes into care work because they have particular needs of their own; seeming to feel, mistakenly, that those needs will be fulfilled within a ‘caring’ situation. Fortunately such people often have a relatively short career once the realities of the job hit them.

The other type, though, is of far greater concern. These are people who are often adept at presenting a very caring front to parents and professionals from other fields, but who on closer or longer acquaintance lack the empathy necessary for such work; rather seeming to enjoy power (which may be one of their motivating forces in entering this profession).

Generally insensitive to the clients' needs such people, when feeling unobserved, may be overbearing and bullying towards them. Likewise if they reach more senior positions, that lack of empathy often shows through. Such was shown by the tragic case when two cousins, who after living together in an institution for several decades were moved to another smaller home: albeit one that was closed itself just a few years later. And with that closure came tragedy for, whatever the truth behind the concerns, there was worse to come as the two women, who had been companions for around 60 years, were separated and sent to live in different homes.

Perhaps it is hardly surprising that one of them died in 2001, some four months after the move. Her death certificate stated that the cause was 'old age and severe learning difficulties'; the official view being that the decision to separate her 'did not contribute to her death' and that she had been poorly for a long time: a simplistic view that totally failed to take the loss of her cousin into account.

In contrast, the staff who worked with her had it right when they said she had simply lost the will to live after the separation: something that certainly rings true – and speaks volumes for their empathy, insight and care.

Unfortunately in managerial positions some of the people I'm refering to, tend to abuse their power: not necessarily by abusing the people in their care (although that has happened), but rather by the way they manipulate or bully the staff.

What though of those who work with the clients on a daily basis? Obviously hospitals are staffed both by qualified nursing staff and healthcare/nursing assistants. But what of the care workers one might find in Community care. Many of those I have worked with have been extremely caring but generally this 'Cinderella job' is low status, pays a near minimum wage, offers little in-depth training - or opportunities to gain promotion - and entails working unsociable hours.

Some staff are inherently empathetic, but generally unless they are trained properly there is always a risk that they will find themselves out of their depth and misinterpret situations or respond inappropriately, thereby aggravating or escalating situations rather than defusing them. A problem common to all settings, even those in the community and something that is perhaps more common when working with people who verbal communication is poor.

So what should come next? Training is certainly vital but any organisation that provides care also needs a professional and robust recruitment scheme along with a commensurate salary and a decent promotional ladder for all ‘care staff ’ so that their skills and dedication is both acknowledged and enhanced as that, in the long term, will provide greater security for those in their care.

Ref: http://www.independent.co.uk/life-style/health-and-families/health-news/bubb-report-winterbourne-viewstyle-homes-must-be-closed-down-9882939.html

Author's Bio: 

Stella Waterhouse is a writer and therapist who has worked children and adults with a variety of learning differences since the late 1960’s.

In the mid 1980s Stella worked at a residential home for approximately 40 adults with Autistic Spectrum Disorders (ASD), where she became Deputy Principal.

In the 1990s Stella set out to write a short book on the role of anxiety in autism., which at that time received little attention. Her research led her to investigate the causes of ASD as well as role of sensory disorders - particularly those of an auditory or visual nature.

The original 'short' book evolved into a much larger project and has so far spawned two full length books including A Positive Approach to Autism - Jessica Kingsley Publishers, plus a series of short books for parents and teachers all of which are currently available as e-books.

Stella is currently completing her new series The Autism Code. For more information on Stella and her products please visit www.positiveapproachestoasd.com