Art Therapy and Learning Disabilities

Don't guess my happiness

Stephanie Bull, Kevin O'Farrell, Stephanie Bull, Kevin O'Farrell

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136314766
• Edition: 1
• Topic: Psychologie
• Subtopic: Psychothérapie

In this book Stephanie Bull and Kevin O'Farrell bring together practising clinicians who provide an insight into using contemporary art therapy with people with learning disabilities. The authentic voice of people who have learning disabilities is central to the book, and case examples, snapshots of thoughts, dialogue, photographs and artwork are included to ensure that the subjects' voices are heard.

The book covers:

• having a learning disability

• 
  
  

• loss and bereavement

• 
  
  

• attachment and separation

• 
  
  

• infantilisation

• 
  
  

• fear

• 
  
  

• powerlessness

• 
  
  

• self and identity.

• 
  
  

This accessible and thought-provoking book is essential reading for anyone involved with people with learning disabilities including art therapists, psychotherapists, counsellors, students and carers.

Chapter 1

Personalisation and a new landscape for learning disability services

Stephanie Bull

Introduction

My first experience of working with people with learning disabilities was in 1992, when I was on placement within a therapeutic unit while completing my art therapy training. I got to know the people there as individuals and this challenged some of my preconceptions about learning disabilities. I also became aware of government proposals for change which were then primarily focused on closing down long-stay institutions and, instead, caring for people within community settings (House of Commons 1990). Since then, there have been significant developments in the provision of services for people with learning disabilities in the UK. The move towards personalised care and away from a predominantly service led approach has had a significant impact on the lives of many people with learning disabilities, particularly in the areas of accommodation, employment and social opportunities. In this chapter, I look at the changing political and social climate which provides the context for the case examples in this book.

I begin by looking at the significance of the government’s White Paper, Valuing People (Department of Health 2001) and go on to consider some of the many documents that followed this. In selecting these documents, I have focused on the following themes:

• Health and well-being
• Dignity and safety
• Choice and control
• Inclusion and contribution
• Quality of life.¹

This was partly because I felt they covered the key areas but also because I found that the sheer volume of documents was overwhelming and this was one way of making them more manageable. At the end of each section I have included a list of the key documents mentioned which I hope will be of particular benefit to students.

Finally in this chapter, I look at what is meant by the term personalisation and how this approach is likely to shape the way that services are provided in the future.

Valuing people

Drawing on Difference was published in 1998 (Rees 1998), the same year that the Human Rights Act was passed. This Act set out 16 Articles aiming to protect the dignity, safety, equality and freedom of all citizens regardless of ethnicity, gender, sexual orientation or disability (Department of Health, 1998). This opened the door to arguably the most significant government paper for people with learning disabilities since Better Services for the Mentally Handicapped (Department of Health and Social Security 1971), namely, Valuing People (Department of Health, 2001).

Valuing People was promoted as ‘A New Strategy for Learning Disability for the 21st Century’ and aimed to bring about significant change so that people with learning disabilities could live full lives, be respected by their fellow citizens and expect the same opportunities as anyone else living in their community.

To do this it identified four key principles:

• That people with learning disabilities should have their legal and civil rights recognised.
• That independent living be promoted and supported.
• That people with learning disabilities be supported to make real choices about all aspects of their lives.
• That people with learning disabilities be included in mainstream society.

The government pledged to listen to people with learning disabilities on an ongoing basis and, to achieve this, ‘Service User Groups’ such as the National Forum for People with Learning Disabilities and the National Learning Disability Task Force were established. As a person centred approach to planning care was key, it was essential that social services and health services work together better to enable this to happen. Learning Disability Partnership Boards were set up across England and Wales. These were led by local councils and brought together all main services as well as representative people with learning disabilities with the objective of facilitating a person centred approach. In this way, all agencies became responsible for the care of people with learning disabilities.

Seven years later, The Joint Committee on Human Rights published A Life Like Any Other (House of Commons 2008). This report was based on an inquiry they had carried out into the extent to which the human rights of adults with learning disabilities in England were being respected.

Key findings were that:

• While Valuing People had provided a useful policy framework, the reality was that the human rights of adults with learning disabilities were still not being upheld.
• Public authorities were not fully committed to the implementation of Valuing People and any attempts to do so were undermined by limited resources.

It stated:

The Committee recommends the introduction of a positive duty on public authorities to promote respect for human rights. Taking a positive and pro-active approach to the creation of a culture of human rights will encourage a move away from negative attitudes and stereotypes which have ‘dehumanised’ adults with learning disabilities in the past.

(Joint Commission on Human Rights 2008)

At the time, the government was in the process of reviewing Valuing People and in 2009 Valuing People Now was published to explain this and set out an updated three-year plan (Department of Health 2009b).

Key documents

Human Rights Act (1998)

Valuing People (2001)

A Life like Any Other (2008)

Valuing People Now (2009)

Health and well-being

The World Health Organisation (WHO) defines health as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’. This definition was formulated in 1946 and the fact that it included mental and social well-being was, at that time, a big step forward in people’s thinking. There have been suggestions that this definition should be revisited and that it should now include a spiritual dimension as well (Larson 1996).

It is important to emphasise that the concepts of health and healthcare are not static and they have varied considerably from one culture to another as well as at different points in history. For example, in the West, the Cartesian view of regarding the body mechanistically was long established. There followed a significant paradigm shift in the 1970s when more holistic ways of thinking about health and healthcare became prevalent, where mind, body and spirit were considered to be completely interrelated (Capra 1983).

Within Valuing People, the government acknowledged that people with learning disabilities often struggled to maintain good health for a variety of reasons including disadvantage and discrimination. To address this, targets were set whereby all people with learning disabilities should be registered with a GP by June 2004 and have an individual Health Action Plan by June 2005.

A Health Action Plan is an individual plan drawn up by the person with learning disabilities and a health practitioner/facilitator (Department of Health 2002). Its primary purpose is to set out the actions required to maintain and improve the health of the person concerned. It was also thought that Health Action Plans would provide the opportunity to educate and inform the person and their carers about how to achieve and maintain good health.

In its report, Treat Me Right, Mencap (2004) argued that people with learning disabilities had poorer health than other people and were more likely to die early. It stated that a key factor for this was that people with learning disabilities received poorer health services. Within this report, Mencap described some real examples of people’s experience of health services and identified areas where it felt change was needed.

Significant recommendations were as follows:

• That healthcare staff should have learning disability training.
• That health services should provide people with learning disabilities with services they need.
• People with learning disabilities should have longer appointments.
• Health information should be accessible.
• People’s records should show if they have learning disabilities.
• Doctors should do more to look out for health problems in people with learning disabilities.
• Annual health checks should be offered.
• Other standard health checks should be offered, e.g. cancer screening.
• An inquiry should take place into why people with learning disabilities die younger.

(Mencap 2004)

Mencap followed this with another report called Death by Indifference (Mencap, 2007) which told the story of six people with learning disabilities – Emma Kemp (26), Mark Cannon (30), Martin Ryan (43), Edward Hughes (61), Tom Wakefield (20) and Warren Cox (30) – who all died prematurely as an alleged consequence of poor healthcare provision from NHS services. Mencap argued that with appropriate medical and clinical care their deaths could have been avoided and that this raised ‘serious concerns’ about the way in which people with learning disabilities are treated within our healthcare system. It stated that ‘while health inequalities have been widely documented and the solutions clearly identified … nothing has been done’.

This report was designed to act as a ‘wake-up call’ for the NHS and it was even suggested that the ‘government could face legal challenges under the new disability equality laws’.

Key findings were that:

• People with learning disabilities were seen as a low priority.
• Many healthcare professionals did not understand much about learning disability.
• Many healthcare professionals did not involve the families and carers – those people who often knew the patient best.
• Many healthcare professionals did not understand the law on capacity and consent to treatment.
• Health professionals relied inappropriately on their own estimates of a person’s quality of life to formulate treatment plans.
• The NHS complaints procedure was often ineffectual, time consuming and inaccessible.

Mencap demanded from government that an independent inquiry take place and that these six cases be investigated together rather than separately. Mencap also demanded that improvement be made in the process of investigating complaints against the healthcare system (ibid.).

In its response to Death by Indifference, a report written by the government ombudsman entitled Six Lives: The Provision of Services to People with Learning Disabilities was presented to Parliament in February 2009. It called for an urgent review of health and social care for people with learning disabilities. The report revealed that there were some significant failures. It confirmed that, in one case, the person had died as a direct consequence of public service failure and that another of the deaths could have been avoided had the standard of care been better. Additionally, it had found that these people had experienced prolonged suffering and it acknowledged that their dignity had been hugely compromised. The report also highlighted the inadequate response to complaints made by family members following the death of their loved one.

Mental health needs

In addition to meeting physical health needs, Valuing People also stressed the importance of meeting the mental health needs of people with learning disabilities. People with learning disabilities are at greater risk of developing mental health problems than the general population (Hardy and Bouras 2002). In 2004, Green Light for Mental Health was developed by the Valuing People Support Team and the National Institute for Mental Health in England (Department of Health 2004). It was designed to act as a service improvement toolkit providing a framework for evaluating how well services were meeting the mental health needs of people with learning disabilities. It aimed to give an overview of what services should aim to achieve which included setting out government’s expectations of services as well as looking at quality outcomes from the perspective of people with learning disabilities and mental health problems and their carers.

Key documents

Treat me Right (2004)

Death by Indifference (2007)

Six Lives: The Provision of Services to People with Learning Disabilities (2009)

Green Light for Mental Health (2004)

Dignity and safety

Just before the publication of Valuing People, a guidance document from the Department of Health was issued in March 2000 called No Secrets: Guidance on Developing and Implementing Multi-agency Policies to Protect Vulnerable Adults from Abuse (Department of Health 2000). This was produced in response to several seriou...