Music Therapy with Adults with Learning Disabilities

Tessa Watson, Tessa Watson

• Publisher: Routledge
• Year: 2007
• ISBN:
  9781134181964
• Edition: 1
• Topic: Psicologia
• Subtopic: Consulenza psicoterapeutica

Music Therapy with Adults with Learning Disabilities explores how music therapists work in partnership with people with learning disabilities to encourage independence and empowerment and to address a wide variety of everyday issues and difficulties.

Comprehensive and wide-ranging, this book describes in detail the role and work of the music therapist with adults with learning disabilities. Many clinical examples are used, including casework with people with autism, asperger's syndrome, profound and multiple learning disabilities and a dual diagnosis of learning disability and mental health problems. The book also explores issues of team work and collaborative working, considering how music therapists and their colleagues can best work together. The chapters are grouped into four sections; an introduction to current music therapy work and policy in the area, clinical work with individuals, clinical work with groups, and collaborative and team work. Guidelines for good practice are also provided.

This is a thought-provoking and topical text for all those involved in work with adults with learning disabilities; it is essential reading for music therapists and fellow professionals, carers, policy makers and students.

Chapter 1

Valuing people

A new framework

Tessa Watson

A history of learning disabilities

The first part of this chapter looks at what a learning disability is and how it affects everyday life. Knowing about these facts and their consequences helps workers to be aware of important issues that might arise during clinical work.

Definitions and causes of learning disability

The definition of a learning disability includes the presence of:

• a significant intellectual impairment

• deficits in social functioning or adaptive behaviour (basic everyday skills) which are present from childhood (Emerson et al. 2001).

In order to ascertain that a person has a significant intellectual impairment, it is usual to refer to intelligence quotient (IQ). An IQ of below 70 is the current score used to indicate a learning disability (measured with the Wechler Adult Intelligence Scale). The World Health Organization International Classification of Diseases (WHO 1992) details four categories of IQ: mild, moderate, severe and profound. It is arguable that these are neither accurate nor useful, due to both the difficulty and value of assessing disability in this way. The interaction between the person and their environment is now considered as important as IQ in assessing disability. Living and working in a familiar, predictable environment will lead someone to have greater coping skills than if they were in an unfamiliar environment with few cues or communication aids.

Causes of learning disability are not always clear, and because of this some people may not have a specific diagnosis. It is accepted that biological, environmental and social factors are all involved in the aetiology of a learning disability. Recent research suggests that in the case of those with a mild learning disability there is often an association with social class and unstable family background. Readers are referred to Emerson et al. (2001) which gives a comprehensive explanation of the different diagnoses of learning disability. Biological factors that can cause a learning disability can be summarized as being genetic (chromosome or gene disorders), antenatal (damage during pregnancy such as infections, intoxication and physical damage), perinatal (damage during birth) and postnatal (damage after birth such as infections or injury). The most commonly known diagnoses are Down’s syndrome, fragile X syndrome and autistic spectrum disorder (ASD, which includes autism and Asperger’s syndrome). It is estimated that in the UK there are between 580,000 and 1,750,000 people with a mild learning disability and 230,000–350,000 with a severe learning disability. Many people with a mild disability do not use specialist services.

Most people with learning disabilities have some form of communication difficulty, which in its turn may cause emotional and behavioural difficulties. About half of these people also have a sensory impairment such as vision or hearing loss, and many have an additional physical disability. Some people may use behaviour which challenges and this is often considered as a response to a situation or experience. In addition to their primary disability, this population may be more likely to experience other health problems such as epilepsy (approximately 30 per cent).

People with learning disabilities who experience difficult or adverse life events may also experience a mental health problem (approximately 40 per cent, including episodes of depression, anxiety, self-injury, or more enduring illnesses such as schizophrenia and bipolar affective disorder). Sinason (1992) describes the burden of handicap as depleting the resources of the individual, making a mental health problem more likely.

Social history

Much has been written about the history of this population (Alaszewski 1988; Brown and Smith 1992; Dumbleton 1998; Malin 1987; Race 1995; Thomas and Woods 2003; Walmsley and Ralph 2002), and this is now summarized briefly. Called ‘fools’ or ‘natural fools’, people with learning disabilities were accepted as part of society until the 1600s. With the Age of Enlightenment came clearer ideas about power, education and employability, and having a learning disability became a stigma and often meant life in the workhouse. The first laws and policies in this area are observed in the Victorian era (e.g. the Mental Deficiency Act 1913), when the morality of the time encouraged harsh treatment and a negative, judging attitude. The ideas behind institutions of the time were broadly based in education, but there was much ill-treatment and poor conditions. Individuals were segregated from their communities and men and women were not allowed to mix. Later, as eugenics became a popular idea, families were blamed for producing a child with disabilities. People with learning disabilities were considered to have a negative influence on those around them, and as a result led limited, regimented lives. We gain an insight into the extremes of thinking of this time from Tredgold’s statement: ‘It would be an economical and humane procedure were their existence to be painlessly terminated’ (cited in Race 2002: 33).

Sinason articulates the issues of euphemism that arise for a population who have been negatively labelled. She traces the history of terms from blockhead, cretin, imbecile, retard, subnormal to disability and reminds us:

Nearly every book on mental handicap written in the last hundred years begins with a chapter on definitions and words chosen. Each such chapter praises itself for its hopeful new term. It is therefore doing a grave disservice to past pioneers to point contemptuously to their chosen terms. Within another five years the process of euphemism will already be affecting the brave new words.

(Sinason 1992: 40)

With the inception of the welfare state and National Health Service (NHS) in 1948, asylums became hospitals and people with learning disabilities began to be cared for by health professionals. Race notes that with this era began the ‘clear footprint of the medical model’ (2002: 36). However, there was no specific training for the work and it was not popular. Gradual change occurred as theorists began to suggest that a hospital should be a place of development and rehabilitation. In 1964 Jack Tizard began his pioneering work, writing about the need for better services. At this time most people with learning disabilities were living in large hospitals, alienated and excluded from society, with little control over their lives. For many, this was their whole life experience. David Barron (a patient) illustrates this, stating: ‘It was an awful life inside the hospital although I knew no other way of living’ (Barron 1989).

Gradually, in the 1960s and 1970s, the concept of normalization began to change services, and the writing of Wolfensberger was brought to the UK from Denmark and the USA (normalization was renamed social role valorization in 1983 to focus attention on the need for valued social roles for people with learning disabilities). As thinking changed, the theme of deinstitutionalization became important. In the UK, the governmental Jay report (HMSO 1979) laid down several principles which valued inclusion in society. O’Brien wrote on ‘the principles of ordinary life’ (1987), and developed accomplishments by which services could measure their achievements.

In 1990 the Community Care Act began the process of closing hospitals and resettling residents into the community (DOH 1990). The numbers of people living in hospital decreased from 51,000 in 1976 to 3638 in 2002 (Emerson 2004; O’Hara and Sperlinger 1997). Most people with learning disabilities now live in residential services in the community. This has brought them many positive benefits including a greater quality of life, individual support and inclusion in community and society. In parallel with these changes in thinking and delivery of services, terminology changed first to mental handicap and then learning disability (the term chosen by the Department of Health in 1990), or learning difficulty (the term preferred by some service users). Alongside these developments, the idea of a social model of disability was growing. This model encourages a socially aware, inclusive culture, and brings attention to the barriers to full living faced by people with disabilities.

Current frameworks for practice

This part of the chapter will summarize recent NHS and government guidance, including the 2001 government White Paper, Valuing People (DOH 2001c). Since the 1990s there has been an increase in literature, training and initiatives developing values of advocacy, partnership, inclusion and person-centred services. As the idea of partnership began to develop between agencies, different models of disability such as social and medical models were compared, leading to a more holistic approach.

The DOH publication Signposts for Success promoted physical health and therapeutic interventions, stating that services should ensure that people with learning disabilities had opportunities to ‘lead a life which promotes mental health and well-being, including communication, relationship building, busy and interesting days and personal achievement’ (1998: 9) and ‘develop and learn throughout their lives by encouraging independence, self-determination and planned risk taking as an aid to personal growth and learning’ (p. 9).

Also in 1998, the Human Rights Act was published, giving the right for all people to a family life, and the right to education (HMSO 1998). These two rights directly link with independence and self-determination, and therefore have an impact on what is considered possible for people with learning disabilities. In 2001 the government White Paper Valuing People was published (DOH 2001c). In 2005 two pieces of guidance were published: first, the Mental Capacity Act which outlined a statutory framework aiming to empower and protect vulnerable people who are not able to make their own decisions (DOH 2005a); second, a government paper titled Improving the Life Chances of Disabled People which aimed to ensure that ‘disabled people should have full opportunities and chances to improve their quality of life … as equal members of society’ (Cabinet Office 2005: 1). In 2006 the government White Paper Our Health, Our Care, Our Say set out plans for the development of health and social care services in the community (DOH 2006).

Thus recent thinking and policymaking allow us to work with clients within a framework that values their contributions and encourages a vision of more fulfilling futures. Valuing People, and the Scottish equivalent The Same as You (Scottish Executive 2001), were broadly welcomed as giving a comprehensive vision for work with this client group in the twenty-first century (see critiques in Eliatamby and Hampton 2001; McGill 2005; Williams 2005). In these publications, principles and strategies for work with people with learning disabilities are given, and issues in their lives considered. Many of the developments of previous decades are taken forward, and at its heart are four main principles: rights, independence, choice and inclusion (DOH 2001c). A summary of these issues is given below.

Working together

Recent writing implies that efficient communication and exchange of information between workers and across organizational boundaries (health, social services, independent and charity organizations) provides more effective services. In particular, health and social services workers now form joint teams, sharing client care. This places importance on strong multidisciplinary and multi-agency working and gives a responsibility to the music therapist, along with other workers, to find appropriate and efficient ways of communicating (with due consideration to confidentiality) about their work. This may be with individual workers concerning particular clients, or through contribution to planning or professionals meetings. Communication systems should also allow contact with partner organizations such as voluntary organizations, schools or mental health service providers. In addition, training may be provided for colleagues about the role of the music therapist within a team or organization. Race (2002) considers that this helps to provide consistency of values between workers and services.

Contact with the client’s family can be useful for all involved, allowing discussion of key issues as the person progresses in their therapy. However, when working with adult clients with learning disabilities it can be unclear how much contact with parents or other family members might be appropriate. Music therapists might hold review meetings with the client and invited members of the family. The content of the meeting could be negotiated with the client, who may wish to lead part or all of the meeting, in order to maintain a sense of control.

Advocacy and person-centred planning

Valuing People states that ‘it is no longer acceptable for organisations to view people with learning disabilities as passive recipients of services; they must instead be seen as active partners’ (DOH 2001c: 51). Great importance is now placed on a culture of self-advocacy, advocacy or empowerment, in order that clients can have a voice and control over their lives. Advocacy can be described as speaking up, or speaking on behalf of a person about a particular issue (Aspis 2002). Empowerment is the process of enabling people to take control of their own lives. Advocacy groups and user forums contribute greatly to an understanding of the needs and wishes of people with learning disabilities.

As part of this culture of advocacy, the concept of person-centred planning (PCP) is articulated. PCP is described by Towell as ‘a way of assisting people to work out what they want, the support they require and helping them get it’ (2004: 12). PCP encourages clients to think, with appropriate people, about their lives, dreams and aspirations, and to develop plans for the future. The idea of following the lead of the client through a person-centred process is familiar to the music therapist who may be invited to contribute to a PCP or planning circle because of the close and reciprocal contact that has been established with the person involved.

Accessible information is frequently used when working in a personcentred way, and a PCP record might include accessible signs and symbols, such as Makaton (a communication system adapted from British Sign Language), photographs, videotape or a computer program as a way of documenting the client’s opinions and personality. Music therapists might also use accessible information in their work: to communicate dates and times as well as breaks in therapy, or to help a client to identify or articulate a particular emotion or experience. Accessible information could be used in relation to paperwork such as referral forms, information sheets or reports (see Grove et al. 2000).

Healthy lifestyles

Health professionals have a responsibility to promote good health and healthy lifestyles. At first sight it might be thought that it is not part of the role of a music therapist to directly address issues relating to a healthy lifestyle. Music therapy work is most closely linked to promoting healthy lifestyles in the areas of communication, mental health, independence and skills, sexuality and relationships and challenging needs. Embedded within this is the promotion of good emotional and mental health, and greater independence and skills in these areas.

In order to promote healthy lifestyles, NHS settings have been directed by the Department of Health to provide each client with a health action plan (HAP). This is defined as ‘a personal plan about what a person with learning disabilities can do to be healthy’. HAPs and health facilitation are ‘about supporting good emotional health as well as good physical health. So this is about your feelings as well as your body’ (DOH 2002: 4). Currently, the emphasis of health action plans tends to be on physical health. However, mental health should also be considered and protocols are to be developed between mental health and learning disability services.

Culturally appropriate services

Mir et al. (2001: 13) remind us that ‘the personal and collective values and experiences of people within minority groups are often different from those of the majority population’ (see also Nadirshaw 1997). Minority ethnic communities face some inequalities and discrimination in employment, education, health and social services, and there is a higher prevalence of learning disability in South Asian communities. There are different ways of thinking about disability and workers may need to explore the attitudes and beliefs of the client and their family in order to be able to work sensitively with issues brought to therapy. For example, there may be cultural expectations about the role of a person with a learning disability in the family, or about what they can achieve, along with expectations of the roles of family carers.

Transition

Transitions from school to college, to a day centre or job, and in old age are important times of change. In reality they cannot always be planned, and clients and their families can find periods of transition unsettling or distressing. The emotional impact of leaving school, which may have provided a positive structure and progression through childhood years, can be significant, as young adults confront the reality that they may not have their dream job or go to university like their siblings. Whilst for many, leaving school is the start of a career or further study and an exciting introduction to independence, young adults with learning disabilities are often confronted with little choice or structure. There may be too few places on appropriate courses at college or further education, or only a couple of days available at a day centre. Valuing People stresses the need for services to work together to ‘ensure effective links are in place within and between children’s and adult’s service in both health and social services’ (DOH 2001c: 43).

Other transitions that mark the beginning of a fully independent, adult life are gaining employment and leaving home. For people with learning disabilities, leaving home may not happen in a natural, positive way, but during a time of crisis (for example, when a parent dies). Employment, one of the ways in which we gain a sense of identity, self-worth, and also a place where many relationships are made, is an important part of adult life. There are now more job opportunities available for people with learning disabilities, some within supportive schemes (Mencap 2002). Towards the end of life, Walker and Walker (2002) consider some of the issues...