Valuing People with a Learning Disability

,

• Publisher: M&K Publishing an imprint of M&K Update Ltd
• Year: 2012
• Print ISBN: 9781905539666
• eBook ISBN: 9781907830662
• Topic: Social Sciences
• Subtopic: Discrimination & Race Relations
• Index: Social Sciences

Most health and social care service providers claim to 'value' those with a learning disability. Yet there can sometimes be a huge gulf between stated intentions and what happens in everyday practice. In a few cases that have recently hit the headlines, there have even been allegations of systematic abuse. This timely book asks three vital questions: What do we mean by valuing? How does the process of valuing work? What needs to happen to ensure that we value people with a learning disability?Too often, practitioners tend to say 'it's all right in theory but not in the real world'. In thisbook, Dr Steve Mee draws on his experience as a practitioner and lecturer on a learning disability nursing course, in which he has successfully used stories to bridge the gap between academic theory and everyday practice. Each chapter introduces the reader to a particular area of theory and illustrates it with uniquely powerful, memorable stories from practice as well as examples from recent news and historic accounts. Reading the book will give practitioners new insight, empathy and sensitivity that will make a lasting difference to their practice. It invites practitioners to truly reflect on whether they can claim to value the people they support.REVIEWER'S COMMENT: "e;I feel this is a very important piece of work in an area that is often misunderstood. From reading the authors work, I have questioned my own approach to 'Valuing People' and found myself lacking in some areas, even though I was of the opinion that I did truly value people with a learning difficulty."e;

The purpose of this book

chapter 1

Water torture

A woman with a learning disability who lived in supported care had been forced out of bed following a verbal confrontation with her support staff. This confrontation escalated to the point at which the staff restrained her in an illegal manner. This woman was then forced into the shower fully clothed, after which she was made to stand outside, where the temperature was near to freezing. She lay on the floor shivering uncontrollably. When she was allowed inside, she appeared to be in the early stages of hypothermia.

(BBC 3)

This incident was reported in 2011 on a Panorama programme entitled ‘Undercover Care: The Abuse Exposed’, broadcast on 31 May 2011. The woman involved had allegedly been subjected to assault and mistreatment.

This book asks the question, ‘What do we mean by valuing people with a learning disability?’ The ‘Water torture’ story appears to be a clear example of de-valuing people with a learning disability. It is probably safe to assume that, for most people, ‘valuing’ means the exact opposite to the behaviour described in this story. The programme narrative suggested that one particular man was the instigator and perpetrator of this mistreatment. Other members of the support staff were described as being scared of him and were reported to have gone along with what was happening. It would be possible to see this as just one example of mistreatment, which in no way reflects the standards within that service or the wider life experience of people with learning disabilities. This incident could be seen as an anomaly (or one-off incident) arising from the actions of one rogue member of the ‘care’ staff.

Castlebeck is the service provider at the centre of this exposé and their website contains a clear statement about the service they intend to provide:

The aim is to enable people to define and achieve the kind of life and relationships that work for them with the outcome being the quality of life for that individual…

Their website also has statements about the support plans they offer:

Person-centred plans help us discover and encourage the individual’s wants, wishes, dreams, ambitions and so on and make sure that ‘clinical’ plans don’t take up his or her whole time. Person-centred plans address the need for us to listen to people and their expectations and make sure we also monitor their progress in terms of quality of life.

We aim to focus on what progress means for the individual and will produce a plan that states exactly how we will support each person, the standards and outcomes to be achieved and who will deliver each aspect of the plan. This will also identify the resources we need to provide for each person’s needs.

These statements probably describe what most of us involved with services to people with a learning disability would recognise as clear intentions to ‘value’ those with a learning disability. Yet in the ‘Water torture’ story above, there is a huge gulf between stated intentions and the alleged reality. At one end of a ‘valuing’ spectrum, there is the intention to listen and work towards an individual’s dreams. At the other end of the spectrum, we have allegations of systematic abuse and even torture. What has happened here?

Was the abuse described in the Panorama programme an anomaly? Or was it an example of something altogether darker and more pervasive? It certainly did not appear to be an example of things getting temporarily out of hand, as the programme reported systematic abuse over a long period at this home. It told a story of the staff team apparently colluding in this mistreatment, of managers being reported as ‘turning a blind eye’, of the care organisation responsible allegedly ignoring a whistleblower, of the inspectors evidently finding nothing wrong (despite also apparently being contacted by the whistleblower), and of the devastated parents of the victim stating on the programme that they had not believed her when she told them of her mistreatment. It appears that the individual said to have instigated this mistreatment was not the only one who devalued this woman. Perhaps the other staff, the managers, the care organisation, the commissioners, the inspectors and her carers could all be viewed as ‘guilty’.

We might also question the attitudes of policy makers who are at present cutting public resources for disabled people, and then we might ask about all the people who voted in a government with a mandate to make these cuts. The list of ‘culprits’ is damning and wide-ranging. It includes ‘care’ staff, parents, the ‘care’ organisation, the inspectorate, the electorate and the government. This specific abuse took place in a wider context, which allowed it to continue. At an individual level, those of us who are practitioners can probably all recall times when we ‘turned a blind eye’ to sub-standard treatment – albeit far less abusive than that reported in the ‘Water torture’ example. How might we have appeared if there had been undercover filming of those things to which we turned a blind eye?

A report from the Equality and Human Rights Commission (EHRC 2011, p. 26) indicates that abuse of people with disabilities is widespread and not confined to supported living:

In March 2002, a 30-year-old woman with learning disabilities was admitted to Borders General Hospital in Scotland with multiple injuries as a result of sustained physical and sexual assaults. The abuse had been carried out at home and was perpetrated by three men, one of whom was her carer. The woman had made allegations against one of the perpetrators as a child but agencies decided her mother could protect her. When her mother died, he was allowed to become her carer, making her sleep on a carpet in the hall at his home. He began taking the woman’s benefit money, deprived her of food and liquid and made her sit in the dark for long periods. Together with two friends he forced her to strip, shaved her head, sexually assaulted her and repeatedly stamped on her face and body. They also threw the woman over a fence, handcuffed her to a door and set fire to her clothing.

Added to the list of ‘culprits’ we now have support agencies that apparently allowed this woman to be ‘cared for’ by someone she had already made allegations against.

Not all abuse is as shocking as that described in the vignettes above. Here is an example that some readers may recognise as a fairly typical encounter.

Behave

An adult with a learning disability wanted to go to the shops to buy a DVD. He needed staff support to negotiate traffic safely. He had been promised that he could do this activity the day before but it had not happened. As he feared being let down again, he asked the support staff several times whether he would be able to get the DVD after lunch. The staff replied, ‘If you don’t stop fussing you won’t be going at all, so behave.’

This is clearly not severe abuse but it is still abuse. The Equality and Human Rights Commission report (EHRC 2011, p. 5) made the following point:

The really serious cases catch the headlines. But what about the constant drip, drip, nag, nag of the so-called ‘low-level’ harassment that many disabled people face on a daily basis? It ruins their lives. They don’t have the confidence to go out. It undermines their ability to be part of society. It makes them behave differently.

The man in ‘Behave’ had the right to visit his local town to buy a DVD. The staff member assumed an authority he did not actually have, to deny him that right. In this particular case, there was no apparent misdemeanour. The staff member was abusing power on a whim.

The same report (EHRC 2011, p. 163) goes on to describe systematic and widespread abuse and harassment of many people with a disability. It concludes:

Our inquiry learnt much from both its investigation into 10 cases and the evidence that disability-related harassment is a widespread problem which has a significant impact on the day-to-day lives of disabled people. We found that the extent of harassment remains largely hidden, its seriousness rarely acknowledged, its link to the victim’s disability not investigated…

The same thing is happening in all these stories and the Equality and Human Rights Commission report suggests it is widespread. Through several layers of society, from government through local organisations to individuals, there has been a collective ‘devaluing’. At best it illustrates casual and unconscious disregard, but at worst we can see callous, conscious, systematic and sustained abuse. It would appear that the woman in ‘Water torture’ was not valued at any level. Yet these events all took place in a world in which the ‘mission statement’ from the service provider and government policy quite clearly defined what they consider to be ‘valuing’ treatment of people with a learning disability.

Several recent reports have highlighted similar issues.

• A joint investigation into the provision of services for people with learning disabilities at Cornwall Partnership NHS Trust (Healthcare Commission 2006, p. 5) highlighted abuse in care services in Cornwall and concluded:

Some individuals, as the trust has acknowledged, have suffered abuse including physical, emotional and environmental abuse. The trust’s own investigations at Budock Hospital have shown that some people using its services have had to endure years of abusive practices and some have suffered real injury as a result.

• An investigation into the service for people with learning disabilities provided by Sutton and Merton Primary Care Trust (Healthcare Commission 2007, p. 3) commented:

The investigation team examined 15 serious incidents that occurred in the learning disability service between December 2002 and November 2005. These were incidents of sexual and physical abuse including one incident when a woman with learning disabilities was raped.

• ‘Death By Indifference’ (Mencap 2007, p. 5) reported on the way people with a learning disability are often excluded from access to healthcare, quoting Allan (the father of Mark, who died in August 2003 of bronchopneumonia):

We believe that Mark died unnecessarily. Throughout his life, we encountered medical professionals who had no idea how to deal with people with a learning disability or what it is like to be a parent of someone with a learning disability – to know their suffering, to see their distress. If only they would listen...

• An independent inquiry (DOH 2008, p. 18), known as ‘The Michaels Report’, looked into the lack of healthcare for people with a learning disability and described the following example:

I work with a client with learning disabilities who has a cataract and challenging behaviour. The GP refuses to treat on the basis that ‘He can see out of his other eye’.

The examples discussed so far are relatively recent cases of significant devaluing of people with a learning disability. However, there is a long history of similar shocking exposés of abuse. Many of these cases have resulted in reports that have gone on to underpin policy change. For example, in the 1960s the conditions in long-stay hospitals for people with a learning disability were brought to public attention by a series of press reports of serious mistreatment. The News of the World exposed conditions in Ely Hospital in Wales in 1968. The Ely Report led to the Howe Report (1969), which in turn led to the White Paper ‘Better Services for the Mentally Handicapped’ (DHSS 1971).

The Seebohm Report (Home Office 1968) had led to the setting up of locally controlled, politically accountable social services. The building of the new hostels was based on the guidelines contained within ‘Local Authority Building Note no. 2’ (DHSS 1973). In 1974 the Secretary of State, Barbara Castle, set up the National Development Group and the National Development Team. She also commissioned the Jay Committee Report (1979), which suggested that hospital care was inappropriate for most people with a learning disability. In 1971 the Campaign for the Mentally Handicapped (CMH) was established to campaign for the rights of people with a learning disability in general and the closure of the long-stay hospitals in particular.

What do we mean by ‘valuing’?

The discussion so far has largely focused on the abuse that people with a learning disability frequently experience. In other words, the focus has been on de-valuing. There are problems in using words such as ‘valuing’ and ‘devaluing’ to aid understanding of the day-today experiences of people with a learning disability. These terms are in common currency in the world of learning disability. Of course the term ‘valuing’ appears in the titles of the most significant recent government directives, ‘Valuing People’ (DOH 2001) and ‘Valuing People Now’ (DOH 2009).

The word ‘value’ actually has two main meanings:

1. ‘To assess or estimate the worth, merit or desirability of…’

2. ‘To have a high regard for, especially in respect of worth, usefulness, merit etc.’ (Collins 1994).

The first definition is a verb and implies neither negative nor positive outcome. In other words, a consequence of ‘assessing or estimating the worth’ of something could be to ascribe either negative or positive value. In this sense of the word it would be possible, for example, to ‘value’ a person and come to the conclusion that they were worthless. The second dictionary definition is closer to what is probably intended when the word is used in learning disability services: ‘to have high regard for.’ However, simply to ‘have high regard’ is a passive state, in which one has already decided the worth of something. It will therefore be argued later in this book that the first definition offers an important consideration. To ‘assess or estimate’ suggests an active state in which one uses mental effort to reach a conclusion. The cognitive processes by which one reaches a conclusion underpin Ch...

Table of contents

• Cover Page
• Other Books
• Title Page
• Copyright
• Contents
• Acknowledgements
• Dedication
• Chapter 1: The Purpose of This Book
• Chapter 2: The Power of Stories
• Chapter 3: Historic Roles
• Chapter 4: Metaphor and Attribution
• Chapter 5: Impression Management
• Chapter 6: Schemas, Social Representation and Stereotypes
• Chapter 7: Normalisation
• Chapter 8: Social Construction of Disability
• Chapter 9: Listening and Talking
• Chapter 10: Valuing in Practice
• Chapter 11: The Eugenics Era and Following Instructions
• Chapter 12: How Might We Value People with a Learning Difficulty?
• References
• Index
• Back Cover