A Case Study of the Impact of Administrative Frameworks on a Group of Intellectually Disabled Children Admitted to an Australian Mental Hospital in 1952

By Gina Andrews Zucker (Gina Andrews)

A thesis submitted in fulfillment of the requirements for the degree of Doctor of Philosophy

Faculty of Medicine and Health

The University of Sydney

February 2020

Declaration of Originality I, Gina Andrews, hereby declare that this submission is my own work and contains no material previously written or published except where acknowledged in the text. Nor does it contain any material which has previously been accepted for the award of another degree.

Acknowledgments Through shared stories, administrative data, journal reviews and interviews, it’s been a privilege to get to know the 13 children with intellectual disabilities who make up this PhD’s case study, all of whom entered state care at Watt Street, Newcastle Mental Hospital, NSW, in 1952. Their stories, and those of their peers, are largely unshared. However, their stories and experiences deserve to be witnessed. Both for their humanity; and to better understand the way government policies have impacted the lives of people with intellectual disability living in institutional settings.

In particular, thank you to Richard McLachlan (who is one of the 13 children in the case study) for allowing me to interview you in your home at Casuarina Grove. I thank the McFadden, McLachlan and Gowlland families (my family) who opted into the study and allowed several family members to be interviewed. In particular, I thank my mother, Sue Andrews, for allowing my Uncle Ricky Gowlland (also one of the 13 children) post his passing away in 2012 to be part of this study via her consent to his administrative and personal files. Added, I wish to thank each and every one of the 50 people whom I have interviewed for this study. Your insights built the foundation of this dissertation.

My appreciation goes to all those who have enabled me to understand how the 13 individuals who lived as children at Watt Street, likely experienced the impact of policy changes throughout their lives.

First among those deserving thanks are my two primary PhD supervisors: Professor Gwynnyth Llewellyn and Emeritus Professor Terry Carney AO. Gwynnyth, thank you for constructively challenging my ideas and encouraging me at each stage of the PhD. Your work ethic, dedication to research, strong advocacy in the disability sector, and your pervasive energy for life, is inspiring. Terry, I have been working with you as a student now through two degrees – your professionalism sets the highest of standards and your unwavering loyalty is humbling. Your sense of humour, often regarding my overuse of adjectives, frequently brightened an otherwise dull writing day. I’m grateful to you both. And, I look forward to opportunities to work with you both in the future.

Equal thanks go to Dr Cherry Russell, PhD, who edited the final dissertation. Cherry has a PhD in Social Anthropology, and was the former Associate Professor (Health Sociology), University of Sydney. I can be an over writer, and Cherry is a magician!

Several NSW Agencies participated in this research: NSW Health, NSW Department of Communities and Justice, and NSW State Archives and Records. Thank you to the executives and advisers for your co-operation and contribution which made the research possible.

Thanks must go to my employer, the Australian Commonwealth’s Department of Prime Minister and Cabinet, who granted me leave, then extended it, allowing me to complete this dissertation.

Thanks must also go to the Australian Commonwealth Government for awarding me an Australian Government Research Training Program Stipend Scholarship (2016-2018). This scholarship enabled me to pursue the PhD.

Sincere thanks to my family (and yes it is large) for the words of wisdom, childcare, groceries and meals, as well as overall encouragement. Special thank you to my parents (Sue and David Andrews), parents in law (Joe and Rina Zucker), brother in law (Josh Zucker), and my two brothers for the childcare and mentoring (Jono Andrews), as well as editing (Matt Busby Andrews). Thank you also to my sisters in laws for taking the boys when deadlines loomed (Georgina, Jacinta, Jo and Kylie).

To my dearest girlfriends (known simply as “ the aunties”), your collective friendship has meant everything is possible (or at the very least bearable). Thank you.

Finally, to my husband Ben Zucker, thank you for being you. Getting this PhD project to completion has been incredibly time consuming for us as a family, and you have taken this in your stride. The achievement of this PhD is a reflection of your unwavering support. Thank you.

This dissertation is dedicated to our two children, Ethan and Jonathan. May you both carry some part of the ‘nephesh’ of your Uncle Ricky throughout your lives.

Table of Contents

Declaration of Originality ...... 2

Acknowledgments...... 3

Table of Contents ...... 5

List of Tables ...... 11

List of Figures ...... 12

Glossary ...... 13

Abstract ...... 15

Chapter 1: Introduction ...... 17

1.1 Statement of the Problem ...... 17

1.2 Background ...... 17

1.2.1 Institutional life ...... 18

1.2.2 NSW Government mental hospitals...... 19

1.2.3 De-institutionalisation ...... 21

1.3 Aim and Research Questions ...... 22

1.4 Overview of the Study ...... 22

1.5 Motivation and Significance ...... 23

1.6 Organisation of the Thesis ...... 24

Chapter 2: First-person Accounts of Institutional Life: A Systematic Literature Review ...... 25

2.1 Introduction ...... 25

2.2 Method ...... 26

2.2.1 Search Process ...... 26

2.2.2 Analysis...... 30

2.3 Results ...... 37

2.3.1 Brief description of eight included articles ...... 37

2.3.2 Methods used in included studies ...... 38

2.4. Findings...... 39

2.4.1 Institutional life: an unnatural construct ...... 39

2.4.2 The process of institutionalisation: challenging an individual’s identity ...... 41

2.4.3 Individual stories of resistance and resilience ...... 41

2.4.4 The influential pull of family, home and community ...... 42

2.4.5 The importance of positive relationships ...... 43

2.4.6 Experiences of abuse ...... 43

2.4.7 The important role of work ...... 45

2.5 Discussion ...... 45

Chapter 3: Administrative Frameworks ...... 47

3.1 Overview of Commonwealth and State Administrative Frameworks ...... 47

3.2 Commonwealth ...... 48

3.3 New South Wales ...... 49

Chapter 4: Methodology ...... 66

4.1 Research Design...... 66

4.1.1 Position of researcher ...... 66

4.1.2 Case Study ...... 68

4.1.3 Case selection...... 69

4.2 Data Analysis ...... 70

4.3 Data Sources ...... 70

4.3.1 Legislation, policy and other government documents ...... 71

4.3.2 Interviews ...... 75

4.3.3 Historical material and observation ...... 87

4.4 Ethical Considerations ...... 88

4.5 Quality Considerations...... 90

4.6 Summary ...... 91

Chapter 5: Childhood at Watt Street Mental Hospital ...... 92

5.1 Legislative and Administrative Framework...... 92

5.2 Patient Characteristics, Watt Street, 1952...... 94

5.3 How Others Saw Watt Street ...... 98

5.3.1 Health care ...... 99

5.3.2 Infrastructure ...... 100

5.3.3 Education ...... 101

5.3.4 Family and community engagement ...... 101

5.4 The Case Study Cohort and Reasons for Scheduling ...... 103

5.5 Impact of the Administrative Framework on Childhood at Watt Street ...... 106

5.5.1 Parens patriae ...... 107

5.5.2 Expectations of co-contributions ...... 116

5.5.3 Family involvement ...... 118

5.5.4 Institutional routines ...... 121

5.6 Conclusion ...... 123

Chapter 6: The Teenage Years in an Adult Mental Hospital ...... 124

6.1 Leaving Watt Street ...... 124

6.2 The Cohort ...... 125

6.3 Stockton and Peat and Milson Islands 1957-1966 ...... 127

6.3.1 Stockton Mental Hospital ...... 127

6.3.2 Peat and Milson Islands ...... 129

6.3.3 Case Study: Michael McFadden ...... 131

6.4 Legislative and Administrative Framework...... 133

6.4.1 Commonwealth ...... 133

6.4.2 New South Wales ...... 134

6.5 Impact of Administrative Frameworks on the Cohort’s Teenage Years ...... 137

6.5.1 Responses to Overcrowding ...... 137

6.5.2 Changes in Staffing Profiles ...... 140

6.5.3 New Program Offerings ...... 142

6.6 The Local Auxiliary Movement Enhances Quality of Life ...... 150

6.7 Conclusion ...... 155

Chapter 7: Adulthood and Work (1967 – 1989) ...... 156

7.1 Status of the Cohort ...... 157

7.2 Legislative and Administrative Framework...... 158

7.3 International Human Rights Instruments ...... 158

7.3.1 Implications for the cohort ...... 160

7.3.2 Commonwealth social security provisions ...... 162

7.3.3 Implications for the cohort ...... 162

7.3.4 Disability Services Act 1986 (Cth) ...... 167

7.3.5 Implications for the cohort ...... 169

7.4 NSW State Level Administrative Changes ...... 169

7.4.1 De-gazettal of NSW mental hospitals ...... 170

7.4.2 Mental Health Act 1983 (NSW) ...... 171

7.4.3 NSW reports and inquiries that impacted the cohort ...... 172

7.5 Impact on Stockton and Peat and Milson Islands ...... 177

7.5.1 Stockton ...... 177

7.5.2 Peat and Milson Islands ...... 182

7.5.3 Callan Park Mental Hospital ...... 187

7.6 Impact on the Cohort’s Adult Years ...... 187

7.6.1 Citizenship, autonomy and choice ...... 187

7.6.2 Structure and meaning in everyday life ...... 191

7.7 Conclusion ...... 195

Chapter 8: Ageing, Retirement and Dying ...... 196

8.1 Key Administrative Frameworks that Impacted the Cohort’s Lives ...... 197

8.1.1 International Agreements ...... 197

8.1.2 Commonwealth ...... 198

8.1.3 Changes at State level ...... 201

8.2 Impact on Residential Centres ...... 207

8.2.1 Stockton ...... 208

8.2.2 Peat Island ...... 209

8.2.3 Casuarina Grove...... 212

8.3 Impact on Members of the Cohort ...... 213

8.3.1 Individual plans ...... 213

8.3.2 Early retirement ...... 217

8.3.3 Case study: Gowlland and McLachlan ...... 218

8.3.4 The ‘Person Responsible’ ...... 219

8.3.5 Health and ageing ...... 221

8.3.6 End of life ...... 224

8.4 Conclusion ...... 227

Chapter 9: Institutional Abuse ...... 229

9.1 Administrative Frameworks and Abuse...... 229

9.2 Case study: Cohort member Paul ...... 230

9.3 Restrictive nursing practices ...... 231

9.4 Sexual abuse by staff ...... 232

9.5 Peer-to-peer abuse ...... 232

9.6 Evidence from the literature...... 233

Chapter 10: Discussion ...... 234

10.1 Administrative Frameworks Set the Course of the Cohort’s Lives ...... 239

10.2 Health Issues Affected the Cohort throughout their Lives ...... 242

10.3 Co-contributions from Families and Auxiliaries Benefitted the Cohort ...... 243

10.4 Social Welfare Payments and Obligations Improved Quality of Life ...... 244

10.5 Relationships with Family, Staff and Peers Varied Over Time ...... 245

10.6 Institutional Life Remains Regimented ...... 247

10.7 Absence of Frameworks to Address Institutional Abuse ...... 250

10.8 Summary ...... 250

Chapter 11: Conclusion and Recommendations ...... 252

11.1 Policy Challenges to the Realisation of Human Rights Values ...... 252

11.2 Australia’s Federalist Governance Structure is a Source of Tension ...... 254

11.3 Limitations of the Study...... 256

11.4 Recommendations ...... 258

11.4.1 Research ...... 258

11.4.2 Policy ...... 259

11.4.3 Practice ...... 260

11.5 Final Reflections ...... 260

References ...... 262

Appendix A: Ethical approval ...... 272

List of Tables

Table 2.1: Systematic analysis of international databases ...... 28

Table 2.2: Results of thematic analysis: original, second and third order interpretations ...... 31

Table 3.1: Commonwealth administrative frameworks relevant to persons with intellectual disability in state care in NSW 1952-2014 ...... 51

Table 3.2: NSW administrative frameworks relevant to persons with intellectual disability in state care 1952-2014 ...... 58

Table 4.1: Characteristics of interviewees and method of recruitment ...... 82

Table 5.1: Watt Street death statistics ...... 96

Table 5.2: Transfer of children from 1952 admission to another government mental hospital... 97

Table 5.3: Summary of cohort population characteristics and assignment of aliases ...... 104

Table 5.4: Information from Department of Health files on deaths of three children ...... 114

Table 6.1: Teenage cohort’s basic population characteristics at transfer to their adult mental hospital ...... 126

Table 6.2: Mental hospital patient accommodation, capacity and overcrowding ...... 138

Table 7.1: Stockton’s resident population during the cohort’s adult years...... 179

Table 7.2: Peat and Milson Island Resident Population 1967-1989 ...... 184

Table 10.1: Three-stage whole-of-data analysis ...... 236

List of Figures

Figure 1 Newcastle Mental Hospital admission data 1947-1957Error! Bookmark not defined.4

Glossary

Administrative frameworks. Refer to the hard and soft statutory laws and Ministerial policies that were in place in Australia at federal and State (NSW) level over the life of the cohort. Hard laws are statutory laws made by Parliament (State or Commonwealth) and subordinate legislation (such as regulations, instruments and declarations) that fall under the statutory provision. Soft laws include Ministerial directives that have less binding application.

Casuarina Grove. NSW government aged care facility for persons with intellectual disability, opened in 2010.

Cohort. The 13 children selected out of the 86 children who were admitted to Watt Street in 1952.

Health Department. An umbrella term for the main NSW government agency from 1952-1989 which was variously known as NSW Department of Public Health, NSW Health Commission, NSW Department of Health, and NSW Health.

Department of Family and Community Services. An umbrella term for the NSW agency with responsibility for disability, family and community services from 1989-2014 and variously known as NSW Department of Community Services (DOCS), Department of Ageing, Disability and Home Care (ADHC), and Department of Family and Community Services (FACS).

De-institutionalisation. The process of moving people out of institutions, such as mental hospitals, to live in the community.

Departmental/government policy. Policies made via the exercise of executive power as well as those authorised under or backed by law.

Individual plans. Also known in NSW as Individual Personal Plans, these are personalised care plans that reflect emerging international philosophies about individualised care and program planning for persons with disabilities..

Institution. In this thesis, an institution is understood in the sense of Goffman’s (1961) construct of a ‘total institution’, that is: “a place of residence and work where a large number of like- situated individuals, cut off from the wider society for an appreciable period of time, together lead and enclosed, formally administered round of life” (Goffman, p. 11).

Intellectual disability. The generic term used in this thesis to cover the historical shifts in terminology, such as ‘spastic’ and variations of ‘retarded’, ‘handicapped’, etc. For authenticity, historical usages, which were considered acceptable and appropriate at the time, are quoted in organisational documents as relevant or enclosed within quotation marks where they appear in my text.

Peat and Milson Islands. Originally, two Islands formed Peat and Milson Islands Mental Hospital (NSW Department of Public Health). The hospital at Milson Island closed in 1972. Subsequently it was known as Peat Island Hospital (NSW Health) and then Peat Island Large Residential Centre (NSW Department of Family and Community Services).

Population group. This term is used throughout the dissertation to refer to the 86 children who were admitted to Watt Street in 1952. The cohort is a subset of the population group.

Sites. NSW government mental hospitals under Lunacy or Mental Health legislation (NSW). Following their legislative transfer from mental health to disability, these facilities were renamed large residential centres. The term is also used to refer to NSW government aged care facilities for persons with intellectual disability, such as Casuarina Grove.

Statute/legislation. Acts of the Commonwealth of Australia or State Parliaments.

Stockton. Stockton Mental Hospital, Stockton Hospital, or Stockton Large Residential Centre.

Abstract This dissertation presents a case study of a cohort of 13 of the 86 children who were admitted in 1952 to Newcastle Mental Hospital (known as Watt Street) in New South Wales, Australia due to their intellectual disabilities. The study examined the lived impact of Australian Commonwealth and NSW State administrative frameworks (laws and policies) on their lives.

The study adopted a mixed methods qualitative research design informed by a social constructivist world view. Data sources included: laws, policies and publications such as annual departmental reports; the children’s government archival administrative records; semi-structured interviews with 50 stakeholders (members of the cohort, family, nurses, administrators, academics and advocates); and accounts by historians. A systematic literature review of first person accounts was also undertaken.

Analysis of the data identified seven broad themes. These were of significance across all stages of the cohort’s lives— childhood, teenage years, adulthood and retirement—but some were more important in some stages than in others. The main findings can be summarised as follows:

• Commonwealth and State administrative frameworks set the course of the cohort’s lives in various institutional settings. Such a regimented existence was, and remains, at odds with the goals of contemporary international human rights instruments such as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and domestic policies such as de-institutionalisation and personalised care. • Two administrative interventions had a positive impact on the cohort—the introduction of social welfare payments in 1967 the state’s expectations of co-contributions from families and auxiliaries to supplement policy and program initiatives. • The cohort experienced chronic, episodic and intermittent health issues throughout their lives. • Positive relationships with family, staff and peers played a vital role in the lives of people with intellectual disabilities in institutional settings. • Experiences of institutional abuse were identified.

The study’s findings led to two main conclusions. First, as long as there are institutional settings, such as those in which several members of the cohort are living today, the full implementation of human rights policies and programs will remain problematic. Second, Australia’s federalist system can both help and hinder the realisation of these rights for Australians with intellectual disabilities. Further investigation is therefore urgently needed to identify ways of minimising or overcoming the barriers that impede the realisation of UNCRPD principles in contemporary residential settings such as aged care facilities.

Findings from this study fill a gap in our knowledge of the experiences of this now ageing group of Australians who were admitted to institutional facilities as young children and the impact on their lives of changes in legislation, regulation and policy. They make an original contribution to scholarship in law and public policy, disability studies and Australian history, and challenge us to reflect on the intended and unintended outcomes of current disability policy in the lives of persons with intellectual disabilities.

Chapter 1: Introduction

This thesis investigates the experiences of 13 people with intellectual disability, referred to as the cohort, who entered full-time government residential care as children in New South Wales, Australia, in 1952. It focuses on how administrative, legislative and policy shifts at State and federal (Commonwealth) level impacted their lives until 2014. This intersection has been relatively unexplored, and the study’s findings make an original contribution to the fields of disability studies, administrative law and public policy and Australian history. The study adopted a qualitative, mixed-methods case study design underpinned by a social constructivist worldview. This approach was selected because it is able to generate rich data on the lived experiences of the cohort and reflects the interdisciplinary nature of the thesis.

This chapter identifies the research problem, explains the purpose of the research and sets out the research questions. It also provides background information about the topic, presents an overview of the research design and describes the organisation of the thesis.

1.1 Statement of the Problem

Immense budgets have been spent, and whole careers have been devoted to policy development and to the care of people with intellectual disability who have lived in Australian mental institutions and other residential settings. Yet there has been little reflection on how these policies and services have affected the lives of the people they were meant to care for. Only two members of the cohort are still alive, so it seems timely to address this gap in our understanding of their experiences of law, policies and administration.

1.2 Background

This section contextualises the study in relation to local and international literature on institutional arrangements for people with intellectual disability in the second half of the 20th century, and the more recent processes of de-institutionalisation.

1.2.1 Institutional life

In this thesis, the term institution draws on Goffman’s construct of a ‘total institution’, that is, a place in which people live and sleep, undertake leisure, education or work, and where all aspects of their activities are scheduled and governed by a system of rules.

A basic social arrangement in modern society is that the individual tends to sleep, play, and work in different places, with different co-participants, under different authorities, and without an overall rational plan. The central feature of total institutions can be described as a breakdown of the barriers ordinarily separating these three spheres of life (Goffman, 1961, p. 17).

Although Goffman’s definition of total institution was developed in 1961 to describe the situation of patients and inmates of large scale mental hospitals and prisons in the USA, his concept has currency today. The principles of institutional life—that the core activities of sleep, play and work all take place at one site—apply to many of the settings where the cohort lived in New South Wales (NSW), including mental hospitals, large residential centres and aged care facilities. The scale of some of these buildings may have changed over time, but they remain essentially institutional settings.

In recent decades, a small but growing number of international and Australian publications have documented the experiences of persons with an intellectual disability who have lived in institutional settings. A preliminary scoping of the University of Sydney library catalogue identified a handful of books about the lived experience of institutional life from the perspective of persons with intellectual disability (Hunter & Mirfin-Veitch, 2005; Johnson, 1998; Johnson & Traustadottir, 2005; Manning, 2008, 2010; Mitchell et al., 2006; Traustadottir & Johnson, 2000). Two well-known works (Malacrida, 2015; Schweik, 2009) are from North America, but most are from European Union countries. Two edited collections focus on intellectually disabled women (Johnson, 1998; Traustadottir & Johnson, 2000).

Of these sources, the approach adopted by Malacrida (2015) is closest to that of the present study. She examined the nexus between the experiences of a group of “mentally defective” patients who lived in Michener Centre in Alberta and the administrative frameworks that governed the facility’s operations. Malacrida drew on interviews with former “inmates” and workers, institutional documents and government archives to illuminate the institutional

18 treatment of these children in 20th century Canada. The findings of my systematic review of nine key international social science databases are presented in Chapter 2.

There are no publically available data about where people with intellectual disability resided in Australia during the 1950s. An analysis of national data in the 1980s, however, indicated that only a small minority, about 10%, of persons with ‘severe handicaps’ were living in institutional care (Wen & Madden, 1998). In 1981 the Australian Bureau of Statistics (ABS) conducted the first national survey of the number of people with disability, the nature of their disability, the services they needed and the extent to which these needs were being met. The ABS found that over half a million persons (514,000) were classified as severely handicapped (this definition includes physical and/or intellectual disability), of whom 271,000 were between 5 and 64 years of age. Of these, 244,000 (90%) lived in households. Only 27,000 (10%) lived in institutions (ABS, 1981; Llewellyn, 2016; Minister for Community Services, 1985). By 1993, the majority (87%) of people with severe handicaps under 65 years were living with relatives (Wen & Madden, 1998). Overall, available data indicate that the institutionalisation rate for people with intellectual disability was 10-13% from 1981-1993 (Wen & Madden, 1998; Llewellyn, Wayland & Hindmarsh, 2015), which represents a small proportion of the overall population of people with ‘severe handicaps’.

There is a valuable body of historical work on institutional life for persons with intellectual disability in Australia (Cocks, 1996; Lloyd, 1987; Manning, 2008). For example, Lloyd (1987) documented the history of Kew Cottages from 1887-1987. This was a Victorian government mental hospital that housed children and adults with intellectual disability. Kew’s scale was comparable to that of Stockton in NSW, where some of the cohort in this study resided in their teenage and adult years. There is also some grey literature involving first person accounts by persons with intellectual disability of their experiences of government institutional care in Australia (Cincotta, 1995; Johnson, 1998; Walker, as told to Knight & Ricci, 2015).

Relevant Commonwealth and NSW administrative laws, policies and reports are discussed in detail in Chapter 3.

1.2.2 NSW Government mental hospitals

Some historical accounts of NSW government mental hospitals contain information on people with intellectual disability (Cummins, 2003; Skopal & Hollier, 2017). Histories of some

specific institutional settings where the cohort lived are also available (Cummins, 2003; Ellmoos, 2010a, 2010b; Mitchell, 2018).

Three historical sources proved particularly valuable in the present study. In 2010, Laila Ellmoos was contracted by the NSW Department of Human Services, Ageing, Disability and Home Care to produce official histories of Peat Island (Ellmoos, 2010b) and the Stockton Centre (Ellmoos, 2010a), both of which were ‘home’ to members of the cohort (see Chapters 6-8). Ellmoos described the nature of institutional life, daily routines and key statutory and policy changes. Ellmoos two books drew on government archival materials and ten oral history interviews conducted by Sue Andersen (2009), acknowledged in both publications as the official oral historian for the project. The books and interviews were useful when there when there were official documentation gaps.

Three academic theses provided insight into the history of Watt Street and, to a lesser extent, Stockton. Williams (2009) documented the history of Watt Street1 over the years 1900- 1930. Although this period was not directly applicable to the cohort, it provided valuable historical context. Hardy (2014) presented a cultural history of Watt Street in its various incarnations over the 19th and 20th centuries: as an Imperial military site (1801-1860); a reformatory and Girls Industrial School (1867-1871); and a mental hospital2 (1871-2014). This was useful background information for the cohort’s childhood experiences in the 1950s. Klotz’s (2001) ethnographic study of a day-activity program at Stockton in the 1990s provided insight into how policy and program changes affected the cohort during this time.3

Of particular value to my study was Kim Walker’s (2015) assisted autobiography, Forgotten and found: My life story (2015). Walker was admitted to Watt Street in 1959 when she was two-and-a-half-years old and lived there until she was 13 before being transferred to Stockton, where she lived until she was an adult. Under the policy of de-institutionalisation, she was moved to a group home in Newcastle. However, Walker herself saw things differently:

Just because it was called a ‘house’ doesn’t mean it wasn’t an institution. 20 persons with intellectual disability lived in the hostel. It was managed by two house parents

1 Under its previous name, James Fletcher Hospital. 2 From 1871-2014 Watt Street was known as a mental asylum, mental hospital, and psychiatric hospital. 3 Klotz’s siblings, Marla and Stephen, lived at Stockton in the 1970s, and her thesis includes her recollection of their experiences there.

24/7… I lived in this group home for about five years. At first it was scary, because you had to do everything by yourself. You had to get up in the morning, feed yourself, get ready for work, and you had to get on with different people. At Stockton, everything was done for you (p. 23).

One of my interviewees, Robert Strike, was also admitted to Watt Street in 1958 aged three years and, like Walker, lived at Stockton and then left hospital to live in the community as a young adult.

1.2.3 De-institutionalisation

De-institutionalisation refers to the concept of moving people out of institutions, such as mental hospitals, to live in the community. The concept, policies and practices of de- institutionalisation have great relevance to this thesis, and, to the cohort. It became an unofficial NSW Department of Health policy following a series of Commonwealth initiatives from 1967. In the 1980s, two independent reviews (Ministerial Advisory Committee, 1987; Richmond, 1983) recommended the closure of some of the hospitals where the cohort lived, notably Peat Island. Subsequently, de-institutionalisation became official NSW policy, culminating in a 10- year plan for the reform of the disability sector, Stronger Together I and Stronger Together II (NSW Government, 2006, 2011). Reports, however, indicate that de-institutionalisation has not yet been fully implemented (Fisher et al., 2013; Molony & Taplin, 1988a). Several publications provide document the experiences of de-institutionalisation among people with an intellectual disability in Australasia (Hunter, 2005; Mirfin-Veitch, 2005; Mirfin-Veitch, 2005; Stewart & Mirfin-Veitch, 2008).

Overall, the literature provides some insight into how government policies and administrative frameworks in relation to the care of people with intellectual disability have changed and developed over time. There is also information about the lived experiences of some of these people. To date, however, scant attention has been paid to the nexus between the two that is, how these administrative shifts impacted the daily lives of the intended recipients of ‘care’—as children, adolescents, adults and older people. This study addresses this research gap.

1.3 Aim and Research Questions

The broad aim of this study was to understand the experiences of a group of children who were admitted to Newcastle Mental Hospital (Watt Street) in 1952 due to their intellectual disability, and the impact of changing administrative frameworks throughout their lives.

The study addressed the following two research questions:

• Why were children with intellectual disability admitted to Watt Street and by what administrative mechanism? • What was the impact of administrative frameworks on the children over their life course?

1.4 Overview of the Study

To answer the research questions, the study employed a qualitative, mixed-methods case study design underpinned by a social constructivist worldview. This methodology is considered highly appropriate for policy analysis (Stake, 1995; Yin, 1984). The approach allowed a deeper understanding—thanks to a range of perspectives—of the likely experience of the cohort and the impact of administrative frameworks on their lives. These multiple perspectives, particularly those obtained from interviews with stakeholders connected with the children, were especially important as I was only able to interview one of the 13 people who made up the research cohort.

There were four main sources of macro level data:

• legislation, policy and government documents that shaped the administration of the cohort’s lives in institutional care; • archival records, including the Watt Street Patient Admission Book 1952 and the administrative files of the 13 children who were admitted that year; • 50 semi-structured interviews with members of five stakeholder groups (the cohort themselves, family members, institutional staff, administrators, advocates, and academics); and • historical accounts of the four main sites where the cohort lived, namely, Watt Street, Stockton, Peat and Milson Islands, and Casuarina Grove.

1.5 Motivation and Significance

The motivation for this study comes from my own experience. My uncle, Ricky Gowlland, was admitted to Watt Street on 18 August, 1952, just short of his sixth birthday. He spent the rest of his life living in state care with other people with intellectual disability. Shortly after he passed away in 2012, I visited the NSW Department of Family and Community Services Offices in Burwood, in the inner west of Sydney, with my mother and maternal aunt, Ricky’s two sisters. We had applied to access my uncle’s files under the Government Information (Public Access) Act 2009 (NSW). I wanted to know why my grandparents (who on all other counts were kind and generous people) had decided to admit their young son to life in an institutional setting. The administrative files came in a number of boxes and we spent half a day reading them. I was left with the deep impression that, after my grandparents had made their decision, it was the decisions of others—parliaments, government ministers, policy and program directors—that shaped my uncle’s life, right down to his daily activities. I was intrigued to know more: what policy interventions had worked, what had benefited him, and what had not. I wanted to better understand how various administrative frameworks had operated in Ricky’s life, and the lives of his peers.

From a social constructivist perspective, all research is value-bound. In other words, the research process is inherently influenced by the researcher and the context of the inquiry. I came to this doctoral work with a personal and professional background that influenced my research choices and the analytical lens I adopted. I came as the niece of one of the cohort (Ricky Gowlland) and therefore had some ‘insider’ knowledge as well as a desire to know more of the story. My professional background too, as a government policy analyst, informed both my research questions and my methodological approach. My positionality as researcher is discussed further in Chapter 4.

The significance of this research is threefold. First, it makes an important contribution to the legal and policy literature on state care of persons with intellectual disability. Second, it provides additional insight into the ‘lived experience’ of this group of people over their life course. Third, by linking these two perspectives, it sheds light on the effects—intended and unintended—of various policy initiatives. By helping to identify what ‘worked’ and why, the findings are expected to inform contemporary applications in other settings.

1.6 Organisation of the Thesis

This chapter has introduced the research problem, presented background information and stated the research questions.

Chapter 2 presents a critical review of international research literature that addresses the experiences of people with intellectual disability who lived in mental hospitals and institutions in the post-World War II era.

Chapter 3 presents the results of a desk review of the Australian Commonwealth and NSW administrative frameworks (laws, policies and government and independent reports) that impacted on the cohort from 1952-2014.

Chapter 4 explains the study’s conceptual framework, research design, and methods of data collection and analysis.

Chapters 5-8 report the findings from the study, organised around key life stages for the cohort – childhood, adolescence, adulthood, and later life, respectively.

Chapter 9 presents results and findings regarding cases of institutional abuse.

Chapter 10 summarises and discusses the findings in relation to the research questions, and identifies overarching themes that emerged from analysis of the cohort’s experiences under various administrative frameworks.

Chapter 11 concludes the thesis and makes recommendations for policy making and future research.

Chapter 2: First-person Accounts of Institutional Life: A Systematic Literature Review

2.1 Introduction

This chapter presents a systematic review of literature that examines international first- person accounts of persons with intellectual disability about their lived experience of institutional life in the post-World War II period. Such an ‘insider’ perspective is crucial to understanding the impact of administrative frameworks on their everyday lives. A preliminary scoping of the University of Sydney library catalogue identified a small number of books about the lived experience of institutional life from the perspective of persons with intellectual disability (Hunter & Mirfin-Veitch, 2005; Johnson, 1998; Johnson & Traustadottir, 2005; Manning, 2008; Traustadottir & Johnson, 2000). A preliminary scoping review of relevant journal data bases revealed a substantial number of articles on the history of institutions, medical research, therapeutic interventions, parenting and family experiences, children in institutional care, and administrative and policy histories associated with institutionalisation of persons with intellectual disability.

Numerous questions emerged during this preliminary scoping exercise. For example, what was the lived experience of institutional life? Were there common themes in their experiences? Were there outlier themes? Were there any systematically documented accounts by persons with intellectual disability? If not, how were their experiences documented? It became apparent that their views had typically been recorded by others—administrators, the medical fraternity and sociologists. However, in keeping with the focus of this thesis, the aim was to foreground the stories and experiences of persons with intellectual disability as much as possible.

Similar preliminary research questions were identified in four of the eight research publications identified in the subsequent systematic literature review process (Brown, Dodd, & Vetere, 2009; Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir, Stefansdottir, Lewthwaite, Ledger, & Shufflebotham, 2006). For example, Swedish researcher Hallrup discussed the small amount of contemporary research presenting the views of people with intellectual disability about institutional life.

2.2 Method

The systematic review process followed the methodological approach developed by the Evidence for Policy and Practice Information and Co-ordinating Centre (EPPIC-Centre) (Gough, Oliver & Thomas, 2013, 2017). This approach involves the application of clear research parameters to provide transparency regarding the steps taken and accountability for the results.

There are three core steps in the process: defining the list of databases and references searched with the reasons for each selection clearly explained; documentation of the search and the rationale for each term chosen; and a rationale for the exclusion of any records (EPPIC Centre, 2010, p. 10). To meet the requirements for replicability, a transparent and accountable description of the research method is to be provided.

This review employed these principles to map available scholarly publications in order to identify those that contained accounts of the perspectives of people with intellectual disability on institutional life. The key research question driving this process was: What is the current state of peer-reviewed literature about the ‘lived experience’ of persons with intellectual disability in institutional settings?

2.2.1 Search Process

The initial search was conducted in early 2015 on nine key international databases: CINAHL, Medline, Psyc Info, Embase, Health Collection, Sociological Abstracts, Proquest Central, Scopus, and JSTOR (see Table 2.1). The rationale for the selection of these databases was that they contained research from a diverse range of disciplines, such as sociology, history, policy, and social work.

Three conceptual categories for search words were chosen: ‘institutionalisation’, ‘intellectual disability’ and ‘experience’. Preliminary searches revealed a wide variation in terminology. To ensure that the data mining process took into account historical, cultural and sector specific changes in terminology, the search included historical usages, such as ‘retard’* and ‘spastic’*, as well as the relevant contemporary term such as ‘intellectual disability’* and ‘cerebral palsy’, respectively. The use of the asterisks (*) reflects that variations of these terms were sought. This process was applied in each of the nine databases prior to implementation of

the formal search. Full details of the search terms used in each of the databases are presented in Table 2.1.

In this thesis, an institution was defined according to Goffman’s construct of a ‘total institution’ (see p. 18 above). Accordingly, community housing for persons with intellectual disability were not included.

The search terms were applied across the nine databases. The inclusion and exclusion criteria were applied to the abstracts of the identified articles. The exclusion criteria for this systematic search were: books, editorials, conference papers, non-research-based (e.g. no evidence of research questions or research method) or grey literature (e.g. self-publications). All terms that did not contain first-person or first-person-facilitated lived experience accounts were excluded.

The inclusion criteria required the presence of a clearly articulated research method (e.g. semi-structured qualitative interviews with participants) and, ideally, an identifiable research design framework (e.g. phenomenological study). The results from the nine data bases were aggregated and duplicates were removed to produce the final set for analysis. In 2017, an updated search was undertaken of the journal that had produced the highest number of eligible articles (six of the eight journal articles came from the British Journal of Learning Disabilities).

Table 2.1 Systematic Analysis of International Databases

Abstracts & articles Search Hits using all Abstracts & Database Search term that met draw date search term articles reviewed the criteria

14 April Experience, government, institution*, state care, resident*, hospital, mental health, CINAHL 663 37 10 2015 retard, psychiat*, learning difficult*, cognitive disabil*.

Experience, government, institution*, state care, mental health, hospital*, residential 16 April Medline facility, intellectual disabil*, retard*, psychiat*, learning difficult*, cognitive 353 18 3 2015 disability*, developmental disability*, cognitive impair*.

15 April Experience, government, institution*, state care, mental health, hospital*, Psyc Info developmental disabilities, intellectual disabil*, retard*, psychiat*, residential, 1105 20 5 2015 learning difficult*, cognitive disabil*, cognitive impairment, life experiences.

16 April Experience*, government, institution, intellectual disability*, retard*, learning Embase 209 19 2 2015 difficult*, developmental disability*, psychiatric hospital.

Health 21 April Experience*, institution*, intellectual disabil* or retard* or handicap*. 19 17 1 Collection 2015

Intellectual disabil*, learning difficult*, retard* or learning difficult*, institution* or 264 headline Sociological 17 April state care, lived experience* or experience*. abstracts 264 0 Abstracts 2015 reviewed. Five articles read.

Proquest Experience*, intellectual disability*or retard*, learning difficult*or developmental 17 April 343 headline disabil*, government or institution, state care or psychiatry hospital. 343 0 Central 2015 abstracts

Abstracts & articles Search Hits using all Abstracts & Database Search term that met draw date search term articles reviewed the criteria

reviewed.

17 April Intellectual disabil* or retard* or learning difficult*, institution or state-care, Scopus 12 12 0 2015 experience.

11 May Experience* or life experience*, intellectual disabil*, institution*. JSTOR 39 4 0 2015

734 headline Total: 3,007 abstracts and 21 132 articles read

2.2.2 Analysis

Two complementary analytical approaches were adopted. First, the Qualitative Research Checklist developed by the United Kingdom’s Better Value Healthcare’s Critical Appraisal Skills Program (CASP) (Better Value Health Care, 2013a, 2013b) was used to clarify the research design and techniques for data collection and analysis. Second, the principles of thematic analysis were deployed during the final stage of analysis of the eight selected articles to synthesise the findings of the review. Specifically, the three stage analytical technique proposed by Mays, Pope, and Popay (2005) for a narrative literature review was adopted. The first stage involves identifying the research findings from each article; in the second stage, the findings across all articles are combined; and the unique findings of the narrative review are generated in the third stage.

Following these steps, I identified the themes in each of the eight articles. In the first stage, I read each article to identify and code the themes according to key words in the text, such as ‘running away’ or ‘abuse’. Next, I aggregated the key terms across the eight articles to identify common themes. Finally, I identified the dominant themes and noted how and where these were generated. This analytic process is displayed in Table 2.2.

Table 2.2 Results of Thematic Analysis: Original, Second and Third Order Interpretations 3rd order 1st order interpretation: Reported findings on 2nd order interpretation: interpretation: Source research participants’ lived experience of institutional life Unique & duplicated categories Common themes across studies 1. Brown, Dodd, The source has identifiable research findings that can be - Abuse. Abuse & struggle (Brown et 1. Unchanging & Vetere categorised under: al., 2009; Hamilton & Atkinson, routines of (2009) 2009; Lynn & Nowicka, 2008). institutional life. - Loss Punishment (Lynn & Nowicka, - Abuse 2008). Sexual abuse (Lynn & 2. Reshaping & - Transition Nowicka, 2008). Bullying from peers challenges to - Health (verbal & physical abuse) (Roberts & identity. - Attachment figures Hamilton, 2010). Financial - Resilience exploitation (Roberts & Hamilton, - Identity 2010). Sexual abuse by a teacher - Social roles (not from the institution) (Roberts & 3. Resistance & - Age and physical characteristics Hamilton, 2010). resilience - Social comparisons (including finding - Personal strengths and difficulties. good times). - Education. Lack of (Lynn & Nowicka,

2008). The provision of schooling 4. Influence & pull (Roberts & Hamilton, 2010). of family and 2. Hallrup The findings were not articulated as such but noted as: home. (2012)

“The essential picture of the phenomenon was experienced ‘as a - Family. Separation from family 5. Relationship: as meaningful and meaningless existence’ and was reflected in (Roberts & Hamilton, 2010). key to surviving residents’ description of their everyday life in an institutional care Absence of family. Emotional and institutional life. setting.” geographic separation from family (Traustadottir, 2006). Relief of 6. Abuse. The essence of their experience can be captured in 3 concepts: moving closer to family - Ambivalent dependency (Traustadottir, 2006). Influential 7. Work: paid, - Social interaction role of family in keeping Tom unpaid and - Everyday life in a restricted area. institutionalised (Traustadottir, underpaid. 2006).

3. Hamilton & The source has identifiable research findings that can be Outlier theme: Atkinson categorised under: - Connection in relationship e.g. Education for some (2009) - Establishing the ‘deficiency’ identification label friendship, looking after children and not for others. - Testimonies of resistance and struggle and special events (eg. Christmas - Memories of kindness. Day) (Hreinsdottir & Stefansdottir, 2010).

4. Hreinsdottir, This was an oral history project. It involved a cross-cultural - Home. Missing home (Roberts & Stefansdottir, comparison of the experiences of two self-advocates with Hamilton, 2010; Traustadottir, Lewthwaite & learning disabilities (Anna and Ebba) who spent significant time in 2006). Ledger (2006) institutions in England and Iceland. Anna and Ebba are co- authors. - Perceptions of Identity. Establishing the deficiency label, The authors do not clearly identify “research findings” but the label ‘mentally retarded’ (Brown et following can be inferred as such: al., 2009; Hallrup, 2012; Hreinsdottir & Stefansdottir, 2010). De-identification & the re- “Their stories bring to life the history of the institutions and the engineering of identity (Lynn & experiences of those who ‘spoke up’ and challenged the system Nowicka, 2008). De-identification long before formal self-advocacy groups were established” (p. and stratification (Roberts & 158). Hamilton, 2010). Stratification (based on ability and behaviour) (Traustadottir, 2006). In relation to “The women continue to feel a very strong sense of injustice social roles (Brown et al., 2009). Age about the institutional segregation they experienced as young and physical characteristics (Brown people. In their shared conference presentation both women et al., 2009). Personal strengths and were at pains to emphasize that the degrading circumstances difficulties (Brown et al., 2009). they endured should not be forgotten and in the words of Ebba Social comparisons in relation to Hreinsdottir ‘we must make sure they no not happen in the physical differences (Brown et al., services of the future’” (p. 165).

3rd order 1st order interpretation: Reported findings on 2nd order interpretation: interpretation: Source research participants’ lived experience of institutional life Unique & duplicated categories Common themes across studies 2009). Health (Brown et al., 2009). The authors also noted the empowering effect of undertaking comparative research into one’s life story (p. 165). - Injustice of being institutionalised (Hreinsdottir et al., 2006).

5. Hreinsdottir This article describes the collaborative development of an & inclusive life history research project by Eyglo Ebba Hreinsdottir - Institutional life. Restricted lives Stefansdottir and Gudrun Stefansdottir. Ebba resided at the institution (Lynn & Nowicka, 2008). Lack of (2010) because of her intellectual disability, while Gudrun was a member privacy (Roberts & Hamilton, 2010). of staff. Lack of supervision (Roberts & Hamilton, 2010). No support from

the institution (Roberts & Hamilton, The authors do not clearly identify “research findings” but the 2010). Experiences of following can be inferred as such: institutionalisation, de- institutionalisation and re-

institutionalisation (Traustadottir, “Ebba has good and bad memories from the institution. The bad 2006). Hating institutional life memories are mostly connected to the label ‘mentally retarded’ (Traustadottir, 2006). Boredom and memories of being lonely, isolated, angry and sad. … The (Traustadottir, 2006). De- good memories from the institution are connected to events like institutionalisation (Traustadottir, friendship, looking after children, the Icelandic Independence day, 2006). Transition [moving between Christmas, rewards for swimming and many other events”. institutions, de-institutionalisation] (Hallrup, 2012). Everyday life in a 6. Lynn & The article is presented as Mabel’s life story in which direct restricted area (Hallrup, 2012). Nowicka quotes are narratively linked by the authors.

(2008)

- Emotional Loss. Memories of being The authors do not clearly identify “findings” but the following lonely, isolated, angry and sad can be inferred as such: (Brown et al., 2009; Hreinsdottir & Stefansdottir, 2010). - Resistance. Mabel refused to speak to staff. - Work at St Lawrence (“People with learning difficulties did the washing up and swept the floors and the staff did the

3rd order 1st order interpretation: Reported findings on 2nd order interpretation: interpretation: Source research participants’ lived experience of institutional life Unique & duplicated categories Common themes across studies cooking. People did the pulling apart of old clothes, removing - Relationships. Attachment figures buttons etc. and the staff did the machining to finish off new (Brown et al., 2009). Friendships clothes”). “People had no money”. with peers (Roberts & Hamilton, - De-identification. No one was allowed personal possessions, 2010). Absence of human including tooth brushes, and wore the same clothing. relationships or care (Traustadottir, - Lack of schooling and educational opportunities. 2006). Attachment figures & - Restricted lives. People were not allowed out of the hospital kindness (Brown et al., 2009; except for two hours on Saturday afternoons. Women and Hamilton & Atkinson, 2009). men were separated. No children visited. No privacy. Women Ambivalent dependency (Hallrup, who menstruated were required to stay in bed for 3-4 days. 2012). Social interactions in the - Punishment. institution: meaningful and - Sexual abuse and sexual exploitation. meaningless existence (Hallrup, - Re-engineering of identity. People were divided into grades 2012). according to their functional ability: higher, middle and lower.

- Resilience & resistance (Brown et al., 2009; Hamilton & Atkinson, 7. Roberts & This source presents the life story of one man, Bill, who is a co- 2009; Hreinsdottir et al., 2006). Eg. Hamilton author. I have identified the key findings in relation to Bill’s Speaking up (Lynn & Nowicka, (2010) experiences of institutional life as follows: 2008). Running away (Roberts & - Separation from family Hamilton, 2010). 1980s evolution of - De-identification and stratification structured advocacy via governance - Lack of privacy mechanisms in the institution and - Friendship with peers Tom’s involvement (Traustadottir, - Missing home 2006). - Schooling

- Lack of supervision - Bullying from peers (verbal and physical harm) - Work. Working in the institution - Financial exploitation and not being paid (Hreinsdottir & - No support from the institution Stefansdottir, 2010; Hreinsdottir et - Running away al., 2006; Lynn & Nowicka, 2008). - Sexual abuse by a teacher (not from the institution) low paid work based on output, It - The workshop (low paid work based on output; an outdated outdated work model (Roberts &

In relation to his post-institutional life, Bill noted:

- I went to a counsellor - The scar I bear.

8. Traustadottir This source features the life story of one man, Tom Allen, (2006) presented through a discussion of the historical development of the self-advocacy movement interwoven with key experiences in his life. In the absence of conventional ‘results’, I have identified the key findings in relation to Tom’s experiences of institutional life as follows: - Institutionalised/ deinstitutionalised back to his family as a child (due to sickness), and re- institutionalised following his mother’s death). - Hating institutional life. - Absence of human relationships or care. - Stratification (based on ability and behaviour). - Work on the wards. - Absence of family. Emotional and geographic separation from family. - Boredom. - Relief of moving closer to family. - The emergence of structural advocacy in the 1980s and Tom’s involvement as a representative in his institution’s governance. - Missing home. - The influential role of family in keeping Tom institutionalised. - De-institutionalisation.

3rd order 1st order interpretation: Reported findings on 2nd order interpretation: interpretation: Source research participants’ lived experience of institutional life Unique & duplicated categories Common themes across studies Self-advocacy in Tom’s life history: - A voice of resistance - First signs of self-advocacy - Organised and formal self-advocacy - Tom’s life in the context of self-advocacy.

2.3 Results

A total of 3007 journal articles was generated from the nine data bases using the key word search terms. Some of these were duplicates that were not identified at this early stage. After the titles and abstracts of the 3007 journal articles had been read, 734 articles that included the search term in the title and/or abstract remained for closer inspection. Of these, only 132 appeared to contain an identifiable research method and first-person accounts, thus meeting the inclusion criteria. Full text was retrieved for these 132 articles. On full text reading, 21 were identified as meeting the inclusion criteria. A further 3 were removed as duplicates.

The analytical principles of the CASP framework and the Mays et al. (2005) approach were applied to these remaining 18 articles. Only 8 publications met the inclusion criteria. The remaining ten publications were excluded because they lacked a clearly defined research method and/or focused on service delivery experiences rather than on first-person accounts.

2.3.1 Brief description of eight included articles

Brown, Dodd and Vetere (2009) used social design theory and method to present the life stories of six older people with Down syndrome who spent some part of their childhood in institutional settings in post-World War II Britain.

Hallrup (2012) employed phenomenological methodology to understand the lived experience of residents of a Swedish institution from 2006-2009. The data were collected through observations of 55 individuals and qualitative interviews with 12 of those individuals.

Hamilton and Atkinson (2009) used an inclusive life story approach in their study of 11 older people with intellectual disability who had lived for a period in institutions in the Republic of Ireland.

Hreinsdottir and Stefansdottir (2010) also used an inclusive life history approach to document the experiences of a resident (Ebba) and a staff member (Guorun) in an institution in Iceland.

In another study employing a life history approach, Hreinsdottir, Stefansdottir, Lewthwaite, Ledger and Shufflebotham (2006) presented a comparative analysis of Ebba’s

account of institutional life in Iceland and that of Anne Lewthwaite, who was institutionalised in a long-stay hospital in Surrey, UK as a baby.

The research design adopted by Lynn and Nowicka (2008) also belongs to the category of life stories. The authors captured Mabel’s experiences of living at St Lawrence, a long-stay hospital in Surry, UK, in the post-World War II period and her subsequent residence as an adult in another institution in England.

Roberts and Hamilton (2010) used a collaborative life history approach to examine Bill Roberts’s experiences as a nine-year-old boy living in a long-stay school for children with intellectual disability in the Republic of Ireland. Bill also appeared as one of the 11 older people in the study by Hamilton and Atkinson (2009).

Finally, Traustadottir (2006) used an inclusive, facilitated life history method. In this study, Tom Allen told his story of institutionalisation as a child in Rome Institution, New York State, USA in the post-World War II era.

2.3.2 Methods used in included studies

Five studies used an inclusive life history approach (Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Roberts & Hamilton, 2010; Traustadottir, 2006). One study used social identity theory combined with a narrative approach (Brown et al., 2009). One study used phenomenology (Hallrup, 2012). The eighth study, Lynn and Nowicka (2008), used semi-structured interviewing with one participant.

Three of the articles presented clearly articulated research findings (Brown et al., 2009; Hallrup, 2012; Hamilton & Atkinson, 2009). Seven reached a research conclusion (Brown et al., 2009; Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Traustadottir, 2006).

Seven studies also recommended further research using the life history approach to engage people with intellectual disability in studies aiming to understand their lives (Brown et al., 2009; Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Traustadottir, 2006).

2.4. Findings

As shown in Table 2.3 and discussed in detail below, the following seven themes were found in seven of the eight articles:

• Institutional life: an unnatural construct • The process of institutionalisation: challenging an individual’s identity • Individual stories of resistance and resilience • The influential pull of family, home and community • The importance of positive relationships • Experiences of abuse • The important role of work.

Four articles contained a secondary theme of education for some residents and not for others (Hamilton & Atkinson, 2009; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010).

2.4.1 Institutional life: an unnatural construct

The participants in these studies, some of whom were babies when they were admitted, saw their life in an institution as an unnatural life. They understood that institutional life was artificial in that sense and did not evoke a sense of home. Many saw institutional life only in terms of fixed and repetitive daily routines and practices. Institutional life also meant that residents were not allowed freedom of choice, such as regular interactions with family and the outside community.

Many also recognised that their social environment was not natural, in that it was not typical of families and communities of the period. For example, men and women were segregated and unable to interact unless authorised by staff. All forms of socialising were initiated and controlled by staff. One research participant noted her complete surprise when she came across a child for the first time in many years (Lynn & Nowicka, 2008).

2.4.1.1 Highly structured routines

Institutional routines were remembered and described as structured, repetitive and often inflexible. There was little variation in daily, weekly, weekend and seasonal routines. Six of the

eight articles noted the regimentation of daily institutional life (Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010; Traustadottir, 2006). In one resident’s words: “Living here means doing the same thing over and over again … day after day” (Hallrup, 2012, p 1587).

2.4.1.2 Unnatural composition of the institutional population

Residents lived in groups based on gender, age, mental capacity, functional ability, behaviour, temperament or medical needs, a situation that would not occur in typical community life. In two articles, residents spoke about the gender-segregated living arrangements (Lynn & Nowicka, 2008; Roberts & Hamilton, 2010). Mabel explained how residents sought to subvert this control over their lives:

Some of the women used to write a letter in the ward, then when they went to church the letter would go under chairs all the way round until it got to the bloke they wanted to get it. The men used to do the same (Lynn & Nowicka, 2008, p. 15).

In the same two articles, residents also commented that living arrangements were age-segregated to prevent children and adults from interacting.

2.4.1.3 Un-home-like nature of institutional life

Residents identified a range of ‘un-home-like’ characteristics of institutional life, including lack of privacy, overcrowded living conditions, being required to live in one place for a long period of time, and lack of creative opportunity. Participants particularly noted the lack of opportunity to personalise their own space, having to endure noise from other residents, and living in a hospital-like environment. In five articles, residents reported that staff regularly interfered with their personal space and physical autonomy (Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010).

Lack of respect and privacy was a dominant theme. Staff assisted, oversaw and/or intervened in the management of residents’ daily personal needs such as showering, medicating, dressing and/or grooming (Hallrup, 2012, p. 1588; Hamilton & Atkinson, 2009; Lynn & Nowicka, 2008). Again, Mabel’s observation is telling: “When women had their period they stayed in bed for three or four days as staff didn’t want any mess” (Lynn & Nowicka, 2008, p. 150). Mabel was also concerned about overcrowding and lack of personal space, as was Bill

(Roberts & Hamilton, 2010). Noise was a particular problem for Mabel and for the 12 participants in the study by Hallrup (2012), one of whom commented:

The new guy that moved in screams all night and cuts himself with CDs. The personnel can’t seem to control him (p. 1589).

Mabel and Tom (in Traustadottir, 2006) talked about the monotony of living in one environment for many years and the challenges involved in coming to terms with such unchanging living arrangements.

2.4.2 The process of institutionalisation: challenging an individual’s identity

In six of the eight articles participants recalled being regularly given diagnostic and medicalised labels (Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010; Traustadottir, 2006). They recounted the terms used by the institution and its staff, including ‘physically handicapped’, ‘mental handicap’, ‘mentally handicapped’, ‘slow’, ‘disabled’, having a ‘disability’, ‘patient’, ‘patients’, ‘the patients’, ‘a mentally retarded person’, ‘retarded’, ‘stupid’, ‘people with learning difficulties’, ‘crippled’, and ‘most disabled persons’.

Although residents were categorised according to medical diagnosis and functional ability, participants in three studies identified themselves in positive and individualistic ways and some sought to avoid being identified as disabled at all (Brown et al., 2009; Hallrup, 2012; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006).

2.4.3 Individual stories of resistance and resilience

Stories of individual resistance to control in the institution were present in five articles (Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010). The most common form of resistance was to run away from the institution (Hamilton & Atkinson, 2009; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010). For some, running away was not only a means of escape but also an act of defiance, resistance and empowerment. For example, Bill reported that running away from his institution as a teenager brought him a sense of relief:

When things got out of control, I used to go to bed at night (then I’d) climb out the window and run away. …I used to run for hours and hours (Roberts & Hamilton, 2010, p. 129).

According to Hamilton and Atkinson (2009), running away represented conscious resistance to institutional confinement.

Another form of resistance was refusing to speak, using private language with one another, or using pseudonyms when interacting with staff. Three participants in two separate studies talked about these strategies (Hreinsdottir et al., 2006; Lynn & Nowicka, 2008). For example, Anne spoke about how they developed “secret names for members of staff and how these were used as a private language on the ward” (Hreinsdottir et al., 2006, p. 160). Other more individual forms of resistance and resilience included displaying anger towards the institution (such as verbally criticising the staff and the institution) and gaining positive insight from an otherwise negative experience (Brown et al., 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Traustadottir, 2006).

2.4.4 The influential pull of family, home and community

Family played an influential role in many residents’ lives. In four studies, residents said they missed their family (Brown et al., 2009; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Traustadottir, 2006). In five articles, residents reported that the institution limited visits to family or community outings and also restricted family visits to the institution (Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010; Traustadottir, 2006). They also talked about missing their family and homes. Some described their sense of loss at being separated from family, including when a family member died (Brown et al., 2009; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Roberts & Hamilton, 2010; Traustadottir, 2006). In Tom Allen’s words:

There were some good things about Syracuse, for example, it was a new building so it did not smell bad. But I was tired of institutions and wanted to move out. I wanted a home before I died. I did not want to die in the institution (Traustadottir, 2006, p. 177).

Despite physical and geographic separation, many families continued to play an influential role—positive or negative—in the lives of residents. Two participants requested that

42 they be moved out of the institution to live in the community; in both cases, the family guardian vetoed the request (Hreinsdottir et al., 2006; Traustadottir, 2006).

2.4.5 The importance of positive relationships

Current and past positive relationships were often key to surviving institutional life. Relationships could be based on regular interaction or on fond memories of a parent who once loved them but had died, or a family member who no longer visited. Real or remembered positive relationships with family, peers or institutional staff were referred to by residents in all eight publications.

Three studies noted the absence of important relationships, such as those with family, and the emotional pain associated with this void (Brown et al., 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Traustadottir, 2006). In five articles, residents emphasised the importance of peer friendships (Hallrup, 2012; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010).

Positive relationships with staff were reported by residents in four articles (Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Traustadottir, 2006). The positive elements involved staff being kind to residents, offering practical support such as assistance with showering and dressing on a daily basis, and having fun.

2.4.6 Experiences of abuse

Experiences of institutional abuse were identified by participants in all eight research articles. Institutional abuse refers to any non-accidental behaviours and actions by staff or others associated with the institution that are outside the norms of conduct and entail a substantial risk of causing physical, emotional or sexual harm. Residents reported having experienced the following types of abuse, in order of prevalence: excessive punishment by staff, emotional abuse, physical abuse, sexual abuse, abuse by peers, and other forms of neglect.

Excessive punishment by staff was cited in seven of the eight research articles (Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010; Traustadottir, 2006). Staff punishments were typically issued as retribution for residents breaking formal or informal institutional rules. Sometimes punishments were issued for no reason at all.

Emotional abuse was referred to by at least one research participant in six of the eight studies (Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010; Traustadottir, 2006). Examples included verbal attacks by other residents and/or staff.

Physical abuse was reported by residents in four articles (Brown et al., 2009; Hallrup, 2012; Hamilton & Atkinson, 2009; Roberts & Hamilton, 2010). Physical abuse included being hit, bitten, punched, beaten, slapped, strangled, attempted drowning, and peers threatening to push another person from a height. Four articles noted experiences of physical abuse involving peers as perpetrators (Brown et al., 2009; Hallrup, 2012; Hamilton & Atkinson, 2009; Roberts & Hamilton, 2010). For example:

It’s very hard. I am always terrified when he is around … once he hit me very hard … I happened to come close to him and no staff were nearby and could help me (Hallrup, 2012, p. 1588).

Another participant, David, noted that when he lived at the institution:

Big Mick ... Bite my ear once (points of his ear) …I was really frightened …I didn’t want to go back there again (Brown et al. 2009).

Sexual abuse was mentioned in three articles (Hamilton & Atkinson, 2009; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010). Peer-to-peer abuse was noted by participants in three studies (Hallrup, 2012; Hamilton & Atkinson, 2009; Roberts & Hamilton, 2010).

Experiences of neglect were cited in six articles (Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010). Neglect in the form of lack of supervision by staff led to other negative consequences such as residents putting themselves in risky situations (Hallrup, 2012; Hamilton & Atkinson, 2009; Roberts & Hamilton, 2010). For example, Bill talked about his experience of wandering around the grounds of his institution alone and subsequently being groomed by a visitor to the institution and sexually abused on several occasions (Hamilton & Atkinson, 2009; Roberts & Hamilton, 2010).

Educational neglect was mentioned by two participants who did not receive any education (Hamilton & Atkinson, 2009; Lynn & Nowicka, 2008). In three studies, however,

participants were educated as children in a school setting in their institution (Hamilton & Atkinson, 2009, p. 318 and 319; Hreinsdottir et al., 2006, p. 161; Roberts & Hamilton, 2010).

2.4.7 The important role of work

In all eight research articles participants talked about being involved in various forms of work in their institutions, including gardening, washing up in the kitchen, cleaning, commercial sewing, machinery, assembly work, packaging, looking after younger children in the institution, assisting nurses as ward staff, looking after the ‘most disabled’ residents, laundry and farming.

In five studies participants talked about their frustrations with work (Brown et al., 2009; Hallrup, 2012; Hamilton & Atkinson, 2009; Lynn & Nowicka, 2008; Traustadottir, 2006). In three studies their concerns involved the pay they received for the work they did (Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Roberts & Hamilton, 2010). Two participants described themselves as unpaid workers (Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006) and one assessed himself as underpaid (Roberts & Hamilton, 2010). Despite these frustrations, those who engaged in work saw it as a source of positive identity which brought them pleasure (Brown et al., 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Traustadottir, 2006).

2.5 Discussion

This systematic literature review yielded remarkably few studies on the lived experience of institutional life among people with intellectual disability. In contrast, there is a relatively rich literature on other groups who have been institutionalised, such as children, women and indigenous people. Their stories have been much more widely covered in government reports, peer-reviewed journals and grey literature.

The present review had some limitations which may have contributed to the small number of items that were retrieved. The search strategy was limited to nine social science data bases and did not include grey literature,4 which may have yielded more extensive studies on the perspectives of people with intellectual disability on institutional life. Another possible reason for the paucity of literature is the decline in the number of institutions over recent decades;

4 For an example of grey literature about Watt Street Newcastle Mental Hosptial NSW see Kim Walker's life story in Walker as told to Knight and Ricci, 2015; Walker, 2006.

45 current research interest may focus more on alternative residential options for adults with intellectual disability such as independent living, group homes or small residential communities. A third factor could be the difficulty in locating and speaking with former residents of institutions—as I have discovered in the course of this project—as well as the fact that many of those who lived in institutions in the immediate post-World War II period have now passed away.

In summary, the systematic literature review identified eight peer-reviewed articles that addressed the experiences of persons with intellectual disability and their perspectives of institutional life in the post-World War II era. Participants in these studies saw their institutional lives as different from living with family in the community and a challenge to their identity or sense of self. Work played an important role in their lives, even though it was underpaid or unpaid, as did positive relationships, especially with family. Despite the challenges of institutional life and its environment of oppression and abuse, many displayed resilience and found opportunities to resist authority and assert control on their own terms. The dominant theme, however, is of a negative life experience whilst living in an institutional setting, with residents longing for connection with family and community.

The review has also generated a number of methodological insights. First, it shows persons with intellectual disability are capable of recalling and telling—often in rich detail— stories of their lived experience in institutions. Second, the life story approach, including facilitated life story-telling5, is an effective method of recording the histories of persons with intellectual disability and, potentially, empowering their combined histories.

Overall, the findings from this systematic literature review provide an additional dimension through which to test, validate and/or challenge administrative histories and publications focused on medical issues for this cohort of institutionalised people with intellectual disability in the post-World War II period.

5 Traustadottir (2006) refers to facilitated life story-telling as an effective method of recording with persons with intellectual disabilities their own life histories.

Chapter 3: Administrative Frameworks

In this short chapter I give an overview of the federal administrative frameworks (Commonwealth and State of NSW) that impacted the cohort. Tables 3.1 and 3.2 describe in chronological order each relevant statute, policy and review during the period 1952-2013 with particular reference, where appropriate, to its impact on the cohort. The analysis begins in 1952, the year in which the cohort was admitted to Watt Street and ends in 2013, when the National Disability Insurance Scheme was introduced.6 By 2013, the surviving members of the cohort who had lived at Peat Island had been transferred to their ‘retirement’ accommodation at Casuarina Grove.

In the tables, ‘administrative frameworks’ refers to the government statutory laws, government and departmental policies, inquiries and administrative decisions that informed the cohort’s lives. The term ‘statute’ refers to the legislative statutes (legislation) that applied to the cohort, such as Commonwealth social security legislation. ‘Policies’ refer to Ministerial or Departmental level instructions that impacted the cohort. ‘Inquiries’ are official reports from Royal Commissions, Parliamentary Committees, Government departments, and Ministerial inquiries. ‘Other’ items of administrative significance include annual reports that applied to the cohort, notably the Annual Reports of the Director of State Psychiatric Services (1959-1970), Department of Public Health, New South Wales.

The tables omit or make minimal reference to policies that did not directly impact the cohort and exclude details on programs and international policies.7

3.1 Overview of Commonwealth and State Administrative Frameworks

Australia is a federal system with three tiers of government: Commonwealth, State and local. Only the first two of these are relevant to understanding the impact of administrative frameworks on the lives of the cohort.

6 The National Disability Insurance Scheme Act 2013 (Cth) is not relevant to the cohort, as it does not apply to persons 65 years and over who were not members of the scheme prior to that age. 7 A number of international policies were of indirect relevance to the cohort. These are discussed only in relevant chapters.

Under the Australian Constitution the Commonwealth has “a number of heads of constitutional power that supports disability services legislation” (ALRC, 1995, p. 11). These include the appropriations power, the power to make grants to the States, the Territories power, the corporation’s power and the external affairs power. The Commonwealth has sole responsibility for social security. The powers over various forms of social security and social welfare “are perhaps the strongest sources of Constitutional authority” (p. 11).

The States are responsible for services such as health care and accommodation. From the beginning of the 20th century until the late 1980s, disability services were mainly considered as a type of health service. Under the Constitution, responsibility for health services lies entirely with State governments, subject to any funding provided under Commonwealth-State Agreements (formal inter-governmental contracts). In practice—for example, in disability and child welfare—provision of some service elements was delegated by the States to the voluntary sector.

3.2 Commonwealth

In 1908 the Commonwealth Government introduced means-tested, non-contributory invalid and age pensions, which commenced in 1910. This began the process through which the Commonwealth assumed responsibility for income support for people unable to provide for themselves, including people with severe disabilities. Social security, in the form of financial support, has played a vital role in the lives of the cohort. Five payments, of varying levels of generosity have been significant at different stages to the cohort, as elaborated below.

Child endowment. This was a basic universal supplement paid to a parent or guardian to assist with the cost of child rearing. For the cohort, it contributed to purchase of clothing and other personal items.

Institutional pension. Cohort members became eligible for this pension when they turned 16. It was paid directly to the government mental hospital rather than to the individual. The payment was repealed in 1980.

Sheltered Employment Allowance (SEA). This was introduced to NSW government mental hospitals in 1967 and was paid to the individual, who therefore had some ‘pocket money’ left after board had been deducted. This was a more generous payment than the Institutional

Pension.8 The recipient of a SEA was required to engage in some form of work or training and to live in ‘hostel style’ accommodation at the hospital. The Commonwealth also required that the mental hospital ensure that the patient in receipt of the SEA was given opportunity to engage with the surrounding community. Commonly referred to in interviews as the ‘pension’, the SEA significantly enhanced the cohort’s quality of life. The SEA was in place until 1980.

Invalid pension. This was extended to residents of all government mental hospitals in 1980, replacing the Institutional Pension. It was paid directly to the individual.

Aged pension. This is a universal means-tested benefit, paid directly to the individual. Originally available at 60 years for women and 65 years for men, the eligibility age is gradually being increased.

The Commonwealth also made significant contributions to the cohort in other areas, such as Medicare, and via overall budgetary allocations and policy development. The Commonwealth establishes policy standards and requirements. For example, in the 1980s the Disability Services Act 1986 (Cth) incorporated international human rights values into the provision of disability services and its intergovernmental agreements. This propelled the States to do the same in their disability legislation and service delivery.

3.3 New South Wales

State government input into service delivery to the cohort has changed dramatically over the past 65 years. During the 1950s, NSW provided hospital-based custodial care under the Lunacy Act 1898 (NSW) and subsequent Mental Health Acts. In 1989, the administration of disability was moved from the NSW Department of Health to the Department of Family and Community Services. This reflected a philosophical and practical shift in service delivery from a medical model of care to a community and social response to disability.

The introduction of NSW’s adult guardianship legislation in the late 1980s also represented a cultural change as, for the first time, a third person (or statutory default guardianship office) could apply for appointment as a guardian, thereby replacing the State as the decision-maker for members of the cohort. The associated policy sought to engage individuals

8 According to my calculations, the rate of the Invalid Pension was approximately three times that of the Institutional Pension from 1968-1980 (Australian Government Department of Families Community Services and Indigenous Affairs, 1983, pp. 115-116; 123-124).

49 and their “person responsible” or other natural or legally appointed guardian in administrative decisions affecting their lives.

It should be noted that the fiscal imbalance between the States and the Commonwealth has often meant that NSW has had to align its programs to Commonwealth expectations in order to receive its share of revenue. For example, the introduction of the SEA in 1967 meant that the mental hospitals where the cohort lived had to upgrade their accommodation, establish ‘sheltered workshops’ on site, and engage residents in work and/or training so they would be eligible for this Commonwealth payment. The additional funding benefited not only the residents but also the hospital, which retained approximately two-thirds of the payment.

There were numerous inquiries over the decades, particularly during the 1980s. These inquiries examined the type and quality of health care provision for persons with ‘developmental disabilities’ living in government mental hospitals and, later, in ‘large residential care centres’. Some of these inquiries, such as the Inquiry into Health Services for the Psychiatrically Ill and the Developmentally Disabled (Richmond, 1983), were pivotal in progressing public policy discussion and, ultimately, policy development in NSW. Several of these inquiries recommended the closure of Peat Island (Richmond, 1983; MAC, 1987).

Important insights were also derived from annual reports in this study (the ‘other’ column in Table 3.2). The Annual Reports from the NSW Department of Health and, later, Family and Community Services often provided vital contextual information about the cohort’s living environment and policy and program priorities over time. They were particularly important sources of information given that the administrative option of issuing NSW Ministerial/Departmental level policies relevant to the cohort was not favoured until the 1990s.

The day-to-day effects of these administrative frameworks are discussed in detail in subsequent chapters.

Table 3.1 Commonwealth Administrative Frameworks Relevant to Persons with Intellectual Disability in State Care in NSW 1952-2014

Commonwealth-State Decade Commonwealth Statutes Commonwealth Policies Federal Inquiries & Reviews intergovernmental Agreements

Social Services Consolidation Act 1947. “The basis of eligibility for child endowment was changed from maintaining a child to having the custody, care and control of a child. A person making a reasonable contribution towards the expenses of maintaining a child in a government 1950s hospital for the insane was deemed to have the custody, care and control of that child.” (FACSIA, 2004, p. 99)

All of the children in the cohort were eligible to receive the Commonwealth’s Child Endowment allowance until the age of 16.

The Mental Institution Benefits Agreement Act 1949 (Cth) validated an agreement between the Commonwealth and State whereby the Commonwealth could pay an institutional pension for persons in NSW mental institutions under the Lunacy Act of 1898 (Cummins, 2000, p. 113). The pension was paid directly to the state (not to the individual) for patients

Commonwealth-State Decade Commonwealth Statutes Commonwealth Policies Federal Inquiries & Reviews intergovernmental Agreements

aged 16 years and older.

Most of the cohort qualified for the institutional pension by the early to mid-1960s.

The State Grants Mental Institutions Act The Report on Mental Health Facilities 1955 followed the Report on mental and Needs in Australia (Stoller, 1955) health facilities and needs of Australians evaluated Australia’s government (the Stoller Report). mental hospitals. It was a valuable source of contextual information about

the living conditions and administrative Under the Act, the Commonwealth arrangements at Watt Street. provided assistance to the States in the

form of a 10/- subsidy for every £1 1950s spent by the States on building or renovation of wards and related accommodation in mental hospitals (Cummins, 2000, p. 113). These building subsidies benefitted the cohort at Peat Island and Stockton Mental Hospitals but not at Watt Street.

1960s The Commonwealth’s Sheltered The SEA was available to Employment Allowance (SEA) was mentally retarded persons over

Commonwealth-State Decade Commonwealth Statutes Commonwealth Policies Federal Inquiries & Reviews intergovernmental Agreements

introduced in 1967 pursuant to the 16 years in NSW mental hospitals, provided they were Social Services Act 1967 (No 10 of 1967). undergoing rehabilitation and The introduction of the SE reflected the were housed in separate wards Commonwealth’s focus on employment that met the criteria for “hostel for persons with disability. like” accommodation (Cummins, 2003, p.126).

The SE was payable to a disabled person engaged in sheltered employment at an approved workshop if he were qualified to receive an invalid pension or would be likely to become qualified if not engaged in sheltered employment. The maximum rate of the allowance was the same as for invalid pension but the means test allowed for more liberal treatment of workshop earnings (FACSIA 2004 p 28).

The Handicapped Persons Assistance Act 1974 (HPAA) was the main vehicle for the delivery of disability services in 1970s Australia from 1974-1986. With its focus on sheltered workshops, it was seen as an outdated model by the 1980s (Lindsay, 1996, p. 20).

Commonwealth-State Decade Commonwealth Statutes Commonwealth Policies Federal Inquiries & Reviews intergovernmental Agreements

The Invalid Pension was extended to New Directions: Report of the persons living in government mental Handicapped Persons Programs Review hospitals in 1980 under the Social (1985) identified people with a disability Services Act 1947. as people first, disabled second. It was a watershed in Australia government

thinking about disability (Llewellyn, The Disability Services Act 1986 (Cth), 2016, p. 8). which was “based on a human rights

framework, also recognised that people with disability have the same rights as The Review ultimately led to repeal of do other members of society. This the Handicapped Persons Assistance Act marked a significant turn in the official 1974 (HPAA), and its replacement by the understanding of disability in Australia” Disability Services Act 1986. (Llewellyn, 2016, p. 190) 1980s The Act covered a wider range of services than the Handicapped Persons Assistance Act 1974, including accommodation support; respite care; supported employment; competitive employment; training and placement; advisory and information services; individual assessment and program planning; rehabilitation services. The Disability Services Act 1986 also provided the legislative framework for disability funding for States.

1990s The Disability Discrimination Act 1992 The Commonwealth Disability Review of the Commonwealth Disability The Commonwealth

Commonwealth-State Decade Commonwealth Statutes Commonwealth Policies Federal Inquiries & Reviews intergovernmental Agreements

(Cth) “provided protection against Strategy 1994 -2004 was Services Program (the Baume Review) State Disability discrimination based on disability. It implemented to help Australian 1995 focused exclusively on the Agreement 1991. “was also aimed to promote equal Government agencies meet employment-related components of the the first opportunity and access for people with their obligations under the Disability Services Program. The Review intergovernmental disability. This Act represented one Commonwealth Disability was highly critical of many aspects of the disability agreement. more step in the lengthy process during Discrimination Act 1992. The Program, including the Commonwealth This five year agreement which understanding of disability in Strategy focused on programs implemented at State level via attempted to rationalise Australia changed from disability as a mainstream services, while supported employment. government roles and health and charity issue (and later accepting the continuing need responsibilities for

welfare issue) to disability as a civil for a range of specialist services funding and operations rights concern and shared community for people with disabilities. The Australian Law Reform of disability services and responsibility” (Llewellyn, 2016, p. 20). Commission’s Review of the Disability to develop a national,

Services Act 1995 examined the integrated disability Commonwealth’s Disability Services services system” Program and Commonwealth (Llewellyn, 2016, p. 19). Rehabilitative Services.

Council of Australian Government (COAG) Examination of Commonwealth and State Roles and Responsibilities in Health and Community Services 1995. COAG agreed to systemic reforms in the way in which health and community services were organised.

Commonwealth-State Decade Commonwealth Statutes Commonwealth Policies Federal Inquiries & Reviews intergovernmental Agreements

Forgotten Australians: A report on Australians who experienced

institutional or out-of-home care as children (2004). This report briefly refers to children with an intellectual disability and their National Disability Strategy experience of institutionalisation. 2010-2020 (2011). This marked a shift towards a rights/social responsibility framework Lost Innocents and Forgotten Australians The National Disability underpinning policy and Revisited (2009). Report on progress in Agreement, introduced statutes from the 2000s. the implementation of the by COAG in 2009, is a recommendations of the Lost Innocents high level agreement and Forgotten Australians Reports. None between

of the report’s recommendations Commonwealth and 2000s directly addressed children with State and Territory disability (physical and/or intellectual) in governments for the institutional care. provision of services for people with disability. The Agreement articulated Commonwealth and State responsibilities.

National Disability Strategy Consultation Report, Shut out: The experience of people with disability and their families in Australia, (2009). This Report found: “For many years people with disabilities found themselves shut in—hidden away

Commonwealth-State Decade Commonwealth Statutes Commonwealth Policies Federal Inquiries & Reviews intergovernmental Agreements

in large institutions” (National People with Disabilities and Carer Council, 2009, p. vi).

2000s The Australian Productivity Commission’s Inquiry and Report Disability care and support: Overview and recommendations (2011) found that the existing Australian disability support system was under-funded, unfair, fragmented and inefficient, providing people with a disability little choice and no certainty of access to appropriate supports. The stresses on the system were growing, with rising costs for all governments. The Report recommended a new national scheme—the National Disability Insurance Scheme (NDIS) — that provides insurance cover for all Australians in the event of significant disability.

Table 3.2 NSW Administrative Frameworks Relevant to Persons with Intellectual Disability in State Care 1952-2014

Decade NSW Statutes NSW Policies NSW Inquiries Other

Lunacy Act 1898 (NSW) This Act consolidated the law in NSW “respecting the insane”. The law 1890s provided for persons who were “insane” or “an idiot”. This was the statute under which the children were admitted to Watt Street.

Mental Health Act 1958 (NSW) There were no relevant NSW Annual Reports, published Government inquiries regarding as Report of the Inspector- This Act changed the justification for children with disabilities in the General of Mental Hospitals detention and involuntary treatment 1950s (Swain, 2014). (1952-1958), Department of from ‘negative paternalism’ (prevent Public Health, New South harm to others) to ‘positive Wales. paternalism’ (prevent harm to self, and benefit the subject) (Fennell, 1950s 2010, cited in Goodings, 2016).

The Act encouraged voluntary admission (Cummins, 2000, p. 111) and had no substantive impact on the cohort apart from the use of more progressive terminology.

There were no relevant NSW Annual Reports, published Government inquiries regarding as Report of the Director of 1960s children with disabilities in the State Psychiatric Services 1960s (Swain, 2014). (1959-1970), Department of Public Health, New South

Decade NSW Statutes NSW Policies NSW Inquiries Other

Wales. There were three NSW government reports in the 1960s that led to

changes in practice in NSW mental hospitals.

Royal Commission of Inquiry into the Callan Park Hospital of 1961. The implementation of many recommendations had implications for all NSW mental hospitals. The main recommendation was to reduce overcrowding at the hospitals.

Third Interim Report of The Health Advisory Council Intellectually Handicapped Persons (1962). This Report, authored by a Council appointed by the NSW Department of Public Health, set the policy tone for the 1960s. Of particular relevance to the cohort, it recommended improvement in the NSW government hospital facilities at Stockton and Peat and Milson Island.

Report of the Inter-Departmental Committee of the Provision of Psychiatric Facilities for Children

Decade NSW Statutes NSW Policies NSW Inquiries Other

Whose Care Has Become the Responsibility of the State (1963). A recommendation in this report called for additional resources and building of suitable accommodation at the state’s mental hospitals to accommodate the waiting list of children and alleviate the poor state of existing accommodation.

From 1978-to 1983, a statutory de- In 1976, the Minister for Health Annual Reports Health gazettal process changed the status commissioned an Independent Commission of New South of many NSW mental hospitals that Committee to Inquire into Total Wales 1970-1981. served the ‘intellectually Patient Care in Psychiatric Hospitals N.b. Milson Island closed in handicapped’. De-gazettal is the (known as the Lett Report). The 1972 (hence from herein legal process of removing or Report made 57 recommendations referred to as Peat Island). decommissioning a statutory about institutional care standards function. The rationale for the de- in NSW Schedule Five Hospitals. gazettal: “The Commission considers Relevant recommendations it desirable that those who are included the provision of “later 1970s developmentally disabled should be evening meals for patients” (later identified as having different than 5:30pm) and the introduction problems, and therefore be treated of “activity nurse positions”. differently, from the psychologically ill” (1980/1981 AR). De-gazettal also meant that the patients were no longer involuntary patients scheduled under the Mental Health Act but were voluntary patients under the Public Hospital Act 1976 (NSW) and, subsequently as adult patients, were eligible to apply for

Decade NSW Statutes NSW Policies NSW Inquiries Other

the Commonwealth’s Invalid Pension.

Stockton was de-gazetted as a mental hospital in 1978.

I anticipate that Peat Island was de- gazetted as a mental hospital in approx. 1978.

Mental Health Act 1983 (NSW). The NSW Parliamentary Report of A report by the NSW the Standing Committee on Subnormal Children’s The Act removed persons with Residential and Community Association, Stockton ‘developmental disabilities’ from its Services on the Better Provision of Hospital: a report on how = purview. This was the first time Services to Handicapped People in the NSW Government cares that persons with developmental NSW was commissioned by the for 830 intellectually disabilities were separated in then Minister for Youth and handicapped children and legislation from persons who were Community Services and published adults in one of its facilities mentally ill. in 1981. One of the Committee’s (McLean, 1981) painted a findings relevant to the cohort was negative picture of the 1980s the “absence of appropriate conditions on the wards at Disability Services and Guardianship services and facilities” for Stockton. Act 1987 (NSW). The Act marked a handicapped people in residential progressive shift for the cohort in the care (pp. 16-18). The Report way that administrative decisions recommended separating services During the International were made and services provided to for handicapped people from those Year of the Disabled Person people with disabilities. It also for people with mental illness (p. (1981). the Health introduced an accessible way of 25). Commission of NSW appointing a substitute decision- introduced a number of maker for an adult with a cognitive David Richmond’s Inquiry into initiatives that helped to capacity (i.e. ‘adult guardianship’). Health Services for the Psychiatrically Ill and the generate more positive

Decade NSW Statutes NSW Policies NSW Inquiries Other

Developmentally Disabled (1983) community attitudes was perhaps the most influential towards persons with Guardianship Act 1987 (NSW). This NSW government report for the ‘developmental disability’. Act replaced the Disability Services cohort during their adult years. It and Guardianship Act 1987 (NSW). addressed the conditions at government hospitals and Annual Reports, Health distinguished between the needs Commission of NSW 1980- of the mentally ill and 1985. developmentally disabled.

Richmond also recommended the closure of Peat Island. Annual Reports, NSW Department of Health 1985-

1989. The Report of the Ombudsman of

NSW Under Section 27 of the Ombudsman Act 1974, concerning Mr R.C. Osborn and the Department of Health, dated 18 October 1983 was tabled in the Parliament of NSW in 1983. The Report examined a complaint against the Department of Health brought by the parent of a child who lost all ten of his finger nails whilst at Peat Island. Recommendations included an increase in staff at Peat Island.

Report and Recommendations of the Ministerial Advisory Committee into the Review of Standards of Patient Care in Fifth Schedule Hospitals in NSW dated August

Decade NSW Statutes NSW Policies NSW Inquiries Other

1987 (1988). Relevant recommendations included closure of government developmental disabilities institutions; urgent closure of Peat Island; review of legal status of patients; substantial improvement in mechanisms for detecting abuse; guardianship legislation be introduced.

Two key administrative changes that impacted the cohort under the Mental Health Act 1983 (NSW). The Act provided for separation of mental health and developmental disabilities services in recognition of their different care requirements. In July 1989 the responsibility for developmental disability was transferred from the NSW Department of Health to the Department of Family and Community Services (AR 1988/1989, p. 2).

According to Section 11 (1) of the Roger West, NSW Community Annual Reports, NSW Mental Health Act 1990 (NSW): “A Services Commissioner (1994- Department of Community 1990s person is not a mentally ill person or 1999), authored the report Peat Services 1989-2014. a mentally disordered person merely Island: A report to the Minister, the because of any one or more of the Hon. Ron Dyer, MLC, Minister for

Decade NSW Statutes NSW Policies NSW Inquiries Other

following: (j) that the person has Community Services, Minister for developmental disability of mind”. Aged Services, Minister for Disability Services (1996).

Disability Services Act 1993 (NSW). Audit Office of NSW, Performance was initiated in response to the Audit Report: Large Residential Commonwealth Disability Services Centres for People with a Disability Act 1986, which required State and in New South Wales (1997). territory governments to introduce or modify their legislation to conform to the Commonwealth Act’s principles and objectives (Llewellyn, 2016, p. 19).

The Disability Services Act 1993 (NSW) identified nine principles and that services and programs of services in NSW must apply – these aimed to achieve positive outcomes for persons with disabilities in NSW.

Stronger Together: A new NSW Ombudsman, People with direction for disability services disabilities and the closure of in NSW 2006-2016 (2006) was a residential centres: A special report 10-year plan to provide greater to Parliament under section 31 of

2000s assistance and long-term the Ombudsman Act 1974 (August

practical solutions for people 2010). with disability and their families. It involved major reforms and service expansion. University of New South Wales Social Policy Research Centre

Decade NSW Statutes NSW Policies NSW Inquiries Other

Report Series, Closure of Grosvenor, Peat Island and Lachlan Stronger Together: A new Residential Centres – Post direction for Disability Services Implementation Review (August in NSW 20112016. The second 2013) phase (2011). Stronger Together II emphasised that an integrated, person-centred sector was a more effective response to the needs of people with a disability, their families and carers.

Chapter 4: Methodology

This chapter elaborates the study methodology. It presents the rationale for choosing a qualitative, mixed-methods case study research design underpinned by a social constructivist world view. The sources of primary and secondary data and the procedures used to collect and analyse the data are described in detail. Ethical considerations and issues of research quality are also discussed.

4.1 Research Design

Qualitative methodology was chosen for this study because it allows for in-depth investigation of social phenomena in their natural setting and takes account of diversity and variety in human experience. Qualitative researchers view the social world as holistic and complex, and seek meaning through iterative examination of data using deductive and inductive techniques (Marshall & Rossman, 2011).

The design of the present study is grounded in social constructivism, that is, the view “that what we take to be objective knowledge and truth is the result of perspective” (p. 236). The basic tenet of social constructivism is that reality is socially, culturally and historically constructed (Lincoln & Guba, 1985; 2000; Schwandt, 1997). From this perspective, there are multiple realities which are shaped by the actors involved (Schwandt, 1997). Rather than starting with a pre-determined theory, research in this tradition begins with one or more questions that address the social phenomenon under investigation.

4.1.1 Position of researcher

Of primary importance, I am the niece of one of the cohort members. I met my uncle, Ricky Gowlland, for the first time when I was about nine years old—my parents had never mentioned him before. As I grew into my adult years and Ricky entered into retirement, our relationship became more and more influential in my life. The other major influence on my perspective was my professional career over more than 20 years as a government policy analyst. Through this experience, I have become increasingly interested in how laws and policies operate and impact on people’s lives, especially on the lives of vulnerable population groups. These personal and professional experiences informed my choice of research questions and my understanding of the research context.

As a result of both of these influences, I already had an ‘insider’ perspective on the research problem. This is in keeping with the expectation that qualitative researchers, especially those who adopt a constructivist philosophy, engage in meaningful ways with participants in order to see the world as they do (Guba & Lincoln, 1998; Lincoln & Guba, 2000). My existing relationships also gave me access to potential participants and sources of information that may not have been otherwise available. For example, I already knew some of the nurse participants who cared for my uncle, and the families of cohort members were more accepting and trusting of me and my research endeavour because of our shared knowledge and experiences. Finally, my position on the board of the NSW Council for Intellectual Disability9 facilitated interviews with administrators and advocates.

At the same time, however, such ‘insider’ knowledge can be seen as a source of bias, and researchers are advised to carefully consider how to address this concern—that is, how to position themselves as an ‘outsider’ for the purpose of analysis and interpretation (Hayfield & Huxley, 2015). I adopted several strategies in order to maintain such an outsider perspective.

First, I sought to maintain professional distance during interviews with people I knew personally, such as nurses, by focusing the discussion on the context of their working situation at the time of their involvement with the cohort. Second, I regularly set aside time for critical reflection (alone and with my supervisors) on my research assumptions and preliminary interpretation of findings. Sessions with my primary supervisor, Professor Llewellyn, were

9 The NSW Council for Intellectual Disability (CID) is a disability rights organisation led by people with intellectual disability. The majority of our board members have an intellectual disability.

67 particularly helpful in this regard, as she offered views that often challenged my original assumptions. For example, in response to my conviction that the majority of persons in Australia with intellectual disability lived in institutions in the post-WWII era, she referred me to the work of Wen and Madden (1998), whose research showed that in fact most lived at home during this period. Similarly, having spent three years working as a policy analyst at the Australian Royal Commission into Institutional Responses to Child Sexual Abuse, I expected to find numerous examples of abuse by staff. However, I came to see that, while there was consistent evidence of institutional neglect, there were far fewer examples of individual staff abuse. As well as utilising critical reflection to recognise and manage my preconceptions, I also focused on ‘actively listening’ during the interviews and applying a rigorous procedure to analysis of the transcripts to allow the data to ‘speak’, instead of looking for what I expected to find. This procedure is described in a later section.

4.1.2 Case Study

The choice of a specific qualitative research genre or tradition typically “follows research problem and purpose” (Bloomberg & Volpe, 2012, p. 31). In other words, the nature of the research proposition calls for the implementation of a specific research design. In the present inquiry, a case study design was indicated.

According to Yin (1984), case study is “the preferred strategy when ‘how’ or ‘why’ questions are being posed, when the investigator has little control over events, and when the focus is on a contemporary phenomenon within some real-life context” (p. 1). Case study research involves a detailed description of a setting and its participants and lends itself to the use of multiple methods of data collection and analysis. Since the purpose of the present inquiry was to generate rich information on the experiences of the cohort of children admitted to Watt Street in 1952 and the impact over time of changing administrative frameworks, the case study approach was particularly appropriate.

In the present study, the case comprised the cohort of 13 children who were selected from a list of those admitted to Watt Street Mental Hospital in 1952. My purpose in using case study design was to develop understanding of the children’s lives over time from multiple perspectives. Accordingly, a variety of data sources was employed, as elaborated below, to provide as full a

picture as possible of their experiences from childhood through adolescence, adulthood, work, retirement and end-of life.

Case study research does not always have a clear beginning or end point (Yin, 2009). I selected the year 1952 as the beginning because this was the year my maternal uncle, John Richard (‘Ricky’) Gowlland was admitted to Watt Street, at the age of five years and 11 months. However the boundaries and end point of the study were more difficult to identify. The decision to select 2013 as the end point was justified both by pragmatic considerations of time and resources for the project and on the introduction in that year of important pieces of Commonwealth and NSW legislation that were relevant to the lives of the cohort, three members of which were still alive at the time.10

4.1.3 Case selection

The cohort of 13 children who comprise the case study was selected from a list compiled from the Register of Patients Admission Book for Newcastle Mental Hospital (Watt Street) for 1952. This source is described in detail in a later section. Of the population of children admitted during this period, two-thirds were male, and it was intended that the cohort reflect this gender ratio. Accordingly, the process of selection was partly purposive and partly random. Nine children (six male, three female) were randomly selected by the Senior Archivist, NSW Department of State Archives and Records. The file folder of one of the male children selected was empty, so another random selection was made.

A further four children were purposively selected: David, Susan, Ricky Gowlland and Michael McFadden. David and Susan were siblings admitted to Watt Street on the same day, and I thought that their files might provide additional insight into the circumstances around admission and the experience of life at Watt Street. My maternal uncle was included because I had access to family accounts, his administrative files and other documents I had obtained under a NSW freedom of information request in 2013. Michael McFadden became the 13th member of the cohort following the publication of two articles about my research in the local press, in which I indicated my desire to interview people involved in Watt Street in the 1950s (Green, 2018a, 2018b). As a result John McFadden contacted me about his brother Michael, who had been

10 In 2013 the National Disability Insurance Scheme Act 2013 (Cth) was enacted; and the NSW’s Disability Services Act 1993 (NSW) was repealed.

admitted to Watt Street in 1952. Michael’s inclusion provided the opportunity to obtain another family picture from interviews and family documents. John, on his own volition, requested all Michael’s NSW Health files from his time at Watt Street and at Peat and Milson Island Mental Hospital, up to the time of his transfer to Parramatta Mental Hospital, where he died aged 13. John and his two sisters also became interviewees.

4.2 Data Analysis

The principles of thematic analysis were deployed to analyse and interpret the literature and empirical findings. Specifically, I used the three-stage analytical technique proposed by Mays et al. (2005). This technique has been explained in detail in Chapter 2 in relation to the analysis of research articles that included first person accounts of the experiences of institutional life by people with intellectual disability.

In relation to the data collected for this project, I also applied the Mays et al. (2005) approach. The first step was to identify the main themes in each of the results chapters (Chapters 5–8). I identified a total of 22 themes. In the second step, I reviewed the themes that emerged from these chapters to identify 11 common themes. Finally, I identified six dominant themes and one outlier. This analytic process is displayed in Table 4.1. Additional detail about the procedures involved in analysis of specific data sources is provided in the relevant sub-sections below.

4.3 Data Sources

There were four main sources of data: legislation, policies and government documents that informed the cohort’s lives in institutional care; archival records, including the Watt Street Patient Admission Book 1952 and the administrative files of the 13 cohort children admitted to Watt Street in 1952; semi-structured interviews with stakeholder groups associated with the population of children admitted in 1952 (members of the cohort themselves, family members, institutional staff, administrators, advocates, and academics); and historical accounts of the four main sites where the cohort lived (Watt Street, Stockton, Peat and Milson Islands, and Casuarina Grove). Each of these is elaborated below.

4.3.1 Legislation, policy and other government documents

For the purposes of this study, administrative frameworks included legislation, government, ministerial and departmental level policies, departmental annual reports, and government and independent reviews, inquiries and reports. It was necessary to review Commonwealth and NSW material because, until relatively recently, there was no clear division of responsibility for disability between the Commonwealth and the States and Territories (as discussed in Chapter 3: Administrative Frameworks).

4.3.1.1 Statutory laws

Statutory laws can play a key role in the protection of vulnerable groups, including people with disabilities, in relation to rights and to eligibility for and access to services.

I began by identifying relevant NSW statutory laws that applied to the cohort from the time of their admission to Watt Street, starting with the Lunacy Act 1898 (NSW) and its subsequent manifestations and ending with the Coroner’s Act 2009 (NSW), which was in place at the deaths of some cohort members. Relevant Commonwealth legislation began with the Child Endowment allowance under the Social Services Consolidation Act 1947 (Cth), the Institutional Pension with the Mental Institution Benefits Agreement Act 1949 (Cth) and subsequent social welfare legislation from 1952-2014.

The process of analysis involved identifying the purpose or intent of the legislation, its principles and objects, historical notes, and those sections that applied to the study population. I also read government documents associated with each statute, such as the legislative Bills,11 preambles and parliamentary Hansard to identify its intended outcome. I then identified if and when the statute had been repealed and if there was a replacement statute.

4.3.1.2 Annual reports

The annual reports were those of the various NSW government departments that were responsible for the mental hospitals, later known as large residential centres. In 1952-1989 this was the Department of Health.

11 A bill is “[a] proposal for a law, or legislation, that is introduced into Parliament … Bills are considered consecutively by the two houses of the Federal Parliament, the House of Representatives and the Senate. The two houses must agree to a bill before it can be transmitted to the Governor-General for assent, which marks its passage into law” (Parliament of Australia, 2019).

These annual reports provided insight into the likely effects of the implementation of relevant laws and policies on the study population that was often not obtainable elsewhere. For example, the NSW Department of Health Annual Reports 1967-1970 provided details about the terms of the implementation of the Commonwealth pension reforms in NSW mental hospitals.

The process of analysis involved reading the Ministerial or Director-General’s Foreword to assess the policy priorities for that year and identify any issues relevant to the population in large residential centres in NSW. I then read any information about state policy and practice of specific relevance to persons with intellectual disability and the four study sites. During the 1950s the annual reports contained detailed site-specific information. I printed copies of each report, highlighted relevant sections and tagged pages for later reference and retrieval.

4.3.1.3 Policies

I was unable to find applicable Commonwealth and NSW policies before the late 1980s/early 1990s, when intergovernmental agreements facilitated by the Commonwealth and signed by the States and Territories were initiated. Accordingly, reliance on the relevant NSW annual reports was vital as these typically provided a summary of key policy and legislative changes and issues.

One of the first readily obtainable intergovernmental policies, the Commonwealth/State Disability Agreement (1991), articulated the States’ responsibilities in relation to disability and the funding and services they were expected to provide until 1996. Subsequent intergovernmental agreements were analysed in terms of policy undertakings, respective NSW and Commonwealth responsibilities and their potential ramifications for the cohort. I cross- referenced this information with interview data, NSW departmental policies and annual reports and the cohort’s administrative files.

In NSW, ministerial and departmental policies were regularly published from the late 1980s onwards. Analysis involved reading the government, Minister’s or Head of Department’s Introduction or Foreword, table of contents, index and sections that specifically related to the population. To determine how the policy played out at an operational level, I cross-referenced with Gowlland’s administrative files and stakeholder interviews, which proved to be a useful process.

4.3.1.4 Government and independent inquiries, reports and reviews

Other sources of information about policy intent and implementation were inquiries, reports and reviews commissioned by government or non-government organisations. For example, Alan Stoller’s Report on Mental Health Facilities and Needs for Australia (1955) was a valuable source of data on Watt Street in the early 1950s.

I located these documents via library searches, from references in departmental annual reports, and through interviews with stakeholders, particularly with administrators. The process of analysis was similar to that described above for other documents. In several instances I was able to interview the authors of these reports.12 A limitation of these documents as a data source was the inability to identify whether a particular set of recommendations had been accepted and which, if any, had been implemented.

4.3.1.5 Administrative records

Two main types of records were examined: The Register of Patients Admission Book for Newcastle Mental Hospital (Watt Street) for 1952 and the Watt Street Mental Hospital individual administrative files of the 13 l cohort members.

Admission book

The Lunacy Act 1898 (NSW) (Lunacy Act) required all NSW government mental hospitals to keep a record of patient admissions, known as the admission book.13 From these records, I was able to obtain the following information: patient number on the register, admission number for the year, date of admission, “name at length”, sex, age at admission, nativity (i.e. place of birth), residence, religion, “how sent” (that is, whether the child was legally sent by way of a magistrate’s order or via request), “Date of Medical Certificate and whom Signed” (that is, two respective medical doctors signed the two independent admission schedules for the individual child), the type of mental disorder as determined on admission, date of discharge, time spent in hospital, and observations.

12 For example, Roger West, who authored Peat Island: A report to the Minister (1996). Other interviewees such as Jeanette Moss, David Richmond, John Taplin, and Merrilyn Walton were also authors and/or committee members of independent government reports. 13 Schedule 9 of the Act: Register of patients and admission book identified the information that needed to be provided by hospital administrators.

I worked with a senior archivist at NSW State Archives and Records Authority to help understand how the information was presented and identify data gaps. The information contained in the admission book primarily reflected the provisions of the Lunacy Act, which mainly related to adults with mental illness and therefore included many indicators not relevant to children with intellectual disability; these were left blank by administrators.14 There were 88 admissions to Watt Street in 1952—86 children and two adults. I analysed the data on all 86 children to assemble a population profile, which is presented in Chapter 5.

Cohort’s administrative files

I accessed all 13 children’s Watt Street administrative files at State Archives and analysed these over several days in January 2018.15 The amount of information available for each cohort member varied. For five (siblings David and Susan, Michael McFadden, Richard McLachlan, and Ricky Gowlland), rich data was provided in their administrative file entries and, from my interviews with some family members, I was able to construct relatively detailed accounts in the form of ‘mini’ case histories. I also had access to Michael McFadden’s teenage years files. With the exception of Gowlland, however, I was not permitted to access administrative files for the cohort during their adult and retirement years, so I relied more on data from interviews and government documents to draw insights into their likely experiences of administrative reforms.

Initial analysis of the Watt Street administrative files revealed a lack of standardisation in the documents they contained. Only one item was common to all 13 files, namely, the schedules under which they were admitted according to the Lunacy Act 1898 (NSW). The schedules proved to be rich in detail about the circumstances leading to admission, the nature of the child’s diagnosis, socio-economic information about the family and the legal status of admission. Where death had occurred, this was recorded on their file and in the Admission Book. Some files held personal correspondence from parents, some contained ward and/or office copies of Private Clothing Cards (records of clothing provided by the family) and some contained the children’s medical files, which were not filled out consistently. Others held a variety of

14 Throughout the thesis, I acknowledge when data on the cohort or the wider 1952 Watt Street admission year population was absent available or incomplete. 15 Several months later, I returned to the State Archives with John McFadden to retrieve the remaining files for Michael McFadden in July 2018, using this as an opportunity to also double check data already collected.

74 administrative documents, such as proformas for temporary leave, and personal documents, such as letters from parents.

4.3.2 Interviews

The second main source of data was semi-structured interviews. A total of 50 people with knowledge of the cohort were interviewed between 2018 and 2019. These comprised surviving members of the cohort (1); family members of the cohort (6); institutional staff (22); administrators (12); advocates (6); academics (2); and people with intellectual disability who lived at Watt Street (1).16

Individual, in-depth interviews are widely used in qualitative research to elicit detailed personal accounts and capture an individual’s perspective of an event or experience (Schram, 2003). It was anticipated that interviews would provide rich data that were not available from the documentary evidence.

The interviews with stakeholders were semi-structured around broad topic areas. A separate schedule was developed for each category (see Appendix). The interview questions for each group were developed in consultation with my supervisors (Llewellyn, Smith-Merry and Carney), each of whom has a different area of expertise. I pilot-tested the family questions on my mother, one of Ricky Gowlland’s sisters. Some interviewees did not fall neatly into one category, but the semi-structured format meant that I had the flexibility to adapt for each interview and as the interview proceeded.

Initial contact with potential interviewees was generally made by phone or email. If there was in-principle agreement, I emailed or posted an information package which included the interview schedule, participant information statement and participant consent form; the latter was to be completed and returned. All interviews were recorded, although some interviewees asked me to turn off the recorder at times. I also took detailed notes, including verbatim quotes, throughout the interviews.

Interviews were conducted from March 2018 to November 2019. What takes place in an interview is the outcome of interaction between interviewer, interviewee, content matter and the context in which it occurs (Rubin, 2011; Schwandt, 1997). Accordingly, interviews were

16 There was sometimes overlap between categories; I have included the person in the most relevant category.

conducted at a location of the participant’s choosing—in their own or a friend’s home (25), in offices (18), by telephone (5), or in a café (2). Most of the institutional staff were retired and this benefitted the study because they were no longer employed by the government department and I sensed they felt able to freely give their opinions.

The section below details the sampling and recruitment for the interviews.

4.3.2.1 Members of the cohort

One of my research goals was to meet and, if possible, interview any surviving cohort members and their families. This proved difficult. Family and Community Services (FACS) NSW, who controlled access to the cohort who remained under their care, required that letters of invitation to participate in the project come from them.17

FACS facilitated contact with the three known surviving members of the cohort and their guardian or person responsible. However, one of the cohort died in the weeks prior to the introductory letter being sent. I do not know this person’s identity. A second declined to be interviewed, so I do not know his or her identity. However, in December 2018, I was given an introduction to one of the two surviving cohort members, Richard McLachlan, and to his ‘person responsible’, his niece Glenda Miller.

I interviewed McLachlan in January 2019. The interview did not follow the prepared schedule. When I met Richard in his home at Casuarina Grove, it became apparent that he might not be comfortable answering a list of questions, so I decided to allow a more ‘natural’ conversation to evolve in which he took control of its direction. For example, he talked about the objects in his room and the activities he liked, such as country music. I felt this style of interview was a more respectful approach. His nurse unit manager and carer, Linda Mcguiness, was present and facilitated the interview, so I was able to learn about his experiences of living at Peat Island and Casuarina Grove. I took notes on the conversation, which I typed up that night, adding descriptive information, such as the arrangement of Richard’s room and what he chose to eat for lunch.

17 Initial concern about the study and its relevance to NSW Department of Family and Community Services (FACS), coupled with staff turnover, led to numerous delays. It also involved a personal representation to my local Member of Parliament (NSW). As well, additional levels of approval had to be sought for the FACS initiation of a Research Services Agreement with the University. Overall, the process of negotiation took more than a year (2017-2018).

4.3.2.2 Families

The second interview group comprised six family members of the cohort. From the beginning of the project, I had been keen to gain insight into their experiences of the impact of the policies and programs that informed their relative’s life in institutional care. These interviews were conducted using the relevant stakeholder group interview schedule.18

Richard McLachlan’s niece, Glenda Miller, was interviewed at her family home in Brisbane in December 2018. Ricky Gowlland’s younger sister, Wendy French (my aunt) and his older sister, Sue Andrews (my mother) were interviewed using the relevant schedule in January 2019 and, given the nature of our relationship, the conversation generated rich data.

All three of Michael McFadden’s siblings were interviewed. John McFadden, Michael’s next younger brother, was recruited via an advertisement and two articles in the Newcastle Herald newspaper. The first article was headed “Gina Andrews wants to interview anyone who worked at the Watt Street Mental Hospital and Stockton Centre between 1952 and 2010” (Green, 2018a) and the second, follow-up article appeared under “Three nurses who cared for intellectually disabled children at the Watt Street Mental Hospital 70 years ago speak of a bygone era” (Green, 2018b). John McFadden was interviewed in April 2018 and, through him, I was able to interview both of Michael’s younger sisters, Elizabeth Marsden and Mary Hale, in January 2019. These interviews yielded valuable insights, from multiple perspectives, into Michael’s life from his admission to Watt Street until his death aged 13 at Parramatta Mental Hospital in 1960.

4.3.2.3 Institutional staff

A total of 22 staff members were interviewed. They had been employed in a variety of roles. Some had worked in different capacities during their careers. Some had been employed in more than one of the institutional settings in which the cohort had lived at various stages of their lives.19 Many had worked over the decades in which the cohort had lived in institutional care. Five had worked at Watt Street, 10 at Stockton, eight at Peat and Milson Islands (two of whom had served as Nurse Manager); two at Casuarina Grove; and two psychologists had worked in specialist roles in which they were likely to have worked with the cohort and/or their peers.

18 Unfortunately, no parent of any cohort member was alive at this time. 19 For example, Nurse Mcguiness worked at Stockton, Peat Island and then Casuarina Grove.

The five nurses who had worked with the children at Watt Street in the 1950s and early 1960s represented an older generation of retired nurses, some of whom were aged in their 80s or 90s at the time of interview. Their accounts informed the discussion of the cohort’s early childhood (Chapter 5).

I was unable to interview staff who worked at Peat Island from 1957-1967 or at Stockton from 1957-1964, which covered the cohort’s teenage years (Chapter 6). Instead, I relied on archival materials, institutional histories and interviews with family members.

Most of the staff interviewed (18) worked between 1967 and 1989. Their accounts inform the discussion of the cohort’s early adult working years (Chapter 7). Many of these nurses were also young adults at the time and had recently attained the newly accredited Mental Retardation Nursing Certificate. Nine had worked at Stockton and six at Peat and Milson Islands. Three were employed outside those two hospitals but interacted with the population: two psychologists provided mental health services, and De-identified 2 worked with a group of men who were transferred to Morisset Mental Hospital when Milson Island closed down in 1972.

Twelve interviewees had worked with the population during their later years from 1989- 2013 (Chapter 8). Four had worked at Stockton, six at Peat Island and two were working at Casuarina Grove. Many were ageing themselves during the 2000s and had worked with the population for several decades—their emotional attachment to its members was clear in these interviews.

A variety of recruitment strategies was employed, including newspaper editorials, social media, flyers at local clubs and community facilities in Brooklyn on the Hawkesbury River (which is near Peat Island), and snowballing (Patton, 2001).20 I also benefitted from the fact that my uncle had lived at Peat Island and Casuarina Grove, so I was not a complete stranger to potential interviewees.

Nonetheless, recruitment of staff from the four sites proved difficult. Some were wary of academic researchers because of the backlash they had experienced from the negative government and media reports that contributed to the closure of Peat Island and the impending

20 Snowballing is a well-established technique of sampling and recruitment whereby a participant is asked to recommend other potential participants who meet the eligibility criteria (in this case, having worked at the institutions where the cohort had lived). Snowballing generated 14 interviews.

78 closure of Stockton and, more recently, a negative evaluation of Casuarina Grove. To offset these potential concerns I made it clear from the outset that my only ‘agenda’ was to listen to their experiences of working with the population and their perspectives on the impact of policies and programs on the lives of children later adults with intellectual disability between 1952 and 2012. The most effective recruitment strategy involved the Newcastle Herald articles, as 18 interviewees were recruited in this way.

Most of the interviews were conducted at the person’s home, which necessitated travelling to Newcastle and the Central Coast of NSW. The staff-specific interview schedule was followed, again with flexibility to pursue other issues raised by the interviewees. I read over my detailed notes on the day of the interview, familiarising myself with the data and highlighting emerging categories. After completing several interviews, I discussed the results of these preliminary analyses with my supervisors.

4.3.2.4 Administrators

Other interviewees were not as closely involved in the lives of the population as the institutional staff but nonetheless played important organisational roles. Such persons are referred to in the qualitative research literature as a “fly on the wall” (Denzin, 1970).

I have labelled this group administrators. They were people who had statutory responsibility under relevant NSW legislation and who had a direct or indirect impact on the cohort’s lives.

With the exception of the independent members of government committees, most had worked with the population across all or most of the period 1952-2012. For example, Dr Verne Caradas had been the Superintendent at Grosvenor Hospital in Sydney for intellectually disabled children in the 1960s and had visited Peat and Milson Islands as part of her duties. This was unusual, however, as it was difficult to locate administrators from these earlier periods (there were none for the early childhood period, one for the period 1960-1967, four for 1968-1989 and four for 1989-2013). Where there were gaps, I relied on archival materials such as annual reports and historians accounts.

I anticipated that administrators would have a deeper knowledge of the relevant administrative frameworks and their impact. Whilst some had a broad ‘macro’ perspective on

79 the population’s experiences, others had day-to-day knowledge of the cohort. For example, Bob Williams was the Nurse Manager at Peat Island from 2009 until the time it closed in 2010. Deidre Russell was the Island’s Nurse Manager from 2004-2009.21 I sought to achieve balance across the interviewees. For example, I interviewed both a NSW Labor and a Liberal Minister for Disability (John Della Bosca and Peter Collins, respectively).

Interviews with administrators were facilitated by introductions from my local MP and Twitter. Again, snowballing proved the most useful strategy. For example, one of my first interviews was with Joy Woodhouse, a former executive at the NSW Ageing and Disability Department, and she pointed me towards six other participants.

4.3.2.5 Advocates

I interviewed members from three separate advocacy groups. Five interviewees had leadership positions associated with the NSW Council for Intellectual Disability (CID), a peak advocacy organisation for people with intellectual disability. Two interviewees were parent advocates associated with Stockton, where the cohort had lived. The third category was represented by the Hon. Patricia Staunton, who was the General Secretary of the NSW Nurses Union 1987-1995. Staunton gave insight into the industrial issues at the hospitals where the cohort lived post the Richmond Report (1983).

I am a Director on the Board of the CID and I knew each of the five interviewees from their current or previous association with the organisation. They were: Jim Simpson, who is Senior Advocate at CID and acted as pro bono lawyer in a law suit regarding a person who was abused in respite care at Peat Island in the 1980s; and Jeanette Moss, who was CEO of CID in the 1980s and advocated for the closure of the institutions where the cohort lived.22 Aine Healy was the CEO of CID between 2014 and 2015 and is a vocal advocate in the disability sector whose views differ from those reflected in existing government disability policies; Justine O’Neill, the current CEO of CID, who was previously the Deputy Guardian at the NSW Public Guardian; and Robert Strike, who lived at Watt Street as a child and subsequently at Stockton Hospital in the years immediately after the cohort’s residence there.

21 I was known to Bob Williams as niece to Gowlland, and he introduced me to his wife Denise Williams and Deidre Russell. Both had worked at Peat Island. I was unable to conduct interviews with existing or previous nurse managers or medical superintendents at Stockton. 22 Moss was introduced to me via Simpson.

The parent advocate, Wendy Cuneo, contacted me following the articles in the Newcastle Herald. She is President of the Stockton Welfare Association. Her son was living at Stockton at the time of writing and another daughter with intellectual disability lived in a group home in the community. Cuneo strongly supported keeping Stockton open as a large residential centre.

4.3.2.6 Academics

I interviewed two academics. Emeritus Professor John Taplin was the lead author of a number of academic journal articles on de-institutionalisation of persons with intellectual disability from NSW’s mental hospitals (Molony & Taplin, 1988a, 1988b, 1990). I was referred to Taplin by Joy Woodhouse. The other was Adrian Mitchell, a retired academic and historian, who produced a history of Peat Island (Mitchell, 2018).

Table 4.1 summarises the characteristics of the interviewees and the method of their recruitment.

Table 4.1 Characteristics of Interviewees and Method of Recruitment

Participant Relationship to Cohort Recruitment method

Cohort

1. Richard McLachlan Cohort member NSW FACS

Cohort’s family

2. Glenda Miller Richard McLachlan’s niece NSW FACS

3. John McFadden Michael McFadden’s brother Newcastle Herald article 5/04/2018

4. Elizabeth Marsden Michael McFadden’s brother John McFadden

5. Mary Hale Michael McFadden’s sister John McFadden

6. Sue Andrews Ricky Gowlland’s sister Family, self-referral

7. Wendy French Ricky Gowlland’s sister Family, self-referral

Institutional staff

Watt Street

8. Gwen Adler Nurse 1950-1953 Newcastle Herald

9. Roma Lee Nurse 1949-1953 Newcastle Herald

10. Kay O’Hearn Nurse 1945-1950 Newcastle Herald

11. Syd Coleman Nurse 1958-1973 (approx.) Newcastle Herald

12. Hazel Wheeler Nurse 1961-1969 Newcastle Herald

Participant Relationship to Cohort Recruitment method

Peat Island

Personal contact. Williams was Peat Island 13. Bob Williams Nurse from 1989, nurse manager 2009-2010. nurse manager when my uncle lived there.

14. Deidre Russell Nurse manager 2004-2009 Referral from interviewee Tracy Wright

Assistant in nursing (AIN) 1997-2010 at Peat Island, then at Casuarina Grove 15. Denise Williams Bob Williams/myself 2010-2013.

Responded to flyer I posted at Mooney Mooney Workers Club (near Peat Island). I 16. Cheree Goddard Administrative officer 1970-2001. then realised that I had worked at NSW Police with their son Chris Goddard who then provided email introduction

17. Alan Goddard Nurse 1969-1991. As above for Cheree Goddard

Mental retardation nurse trained at Stockton starting in 1977 and then 18. Jim Dow Newcastle Herald worked at Peat Island 1985-1987.

Worked as a nurse’s aide/attendant in the summer of1969/1970 at Milson 19. Craig Rickard Newcastle Herald Island.

Stockton

I posted a Tweet via @GinaSAndrews in 2018 Trained as a mental retardation nurse at Stockton starting 1967 and worked inviting interest from anyone who had 20. Redmond Borg there until 1976. worked as a nurse at Stockton and Peat Island from 1950s onwards.

Trained as a mental retardation nurse at Stockton in 1961 and worked there 21. Angela Thomas Newcastle Herald until approx. 1998.

Participant Relationship to Cohort Recruitment method

Trained as a mental retardation nurse at Stockton in 1979 and worked there 22. Rowena Murray Newcastle Herald until approx. 1995.

Trained as a mental retardation nurse at Stockton starting 1976 and worked 23. Grahame Davis Newcastle Herald for NSW Health for the remainder of his career.

Trained as a mental retardation nurse at Stockton starting 1979 and was still 24. Kieran Kelly Newcastle Herald working there in 2018.

Trained as a mental retardation nurse at Stockton in 1967 and worked there 25. Eva Furness Newcastle Herald until 1985.

Began working at Stockton Centre as a ward maid 1965, subsequently trained 26. Val Forbes Newcastle Herald as a mental retardation nurse then charge nurse, retired from Stockton 2019.

Trained as a mental retardation nurse at Stockton starting 1964-1967; in 1979 27. Carole Camp Newcastle Herald went back to work at Stockton.

Casuarina Grove

Trained at Stockton as a mental retardation nurse in 1977, worked majority of Personal contact. Mcguiness was Gowlland’s 28. Linda Mcguiness career at Peat Island 1987-2010 (some breaks) then Casuarina Grove 2010-19. nurse unit manager at Peat Island.

Other institutional staff

Psychologist with NSW Health/Ageing Disability and Home Care, FACS 1972- 29. Mary-Ellen Bourke Referral from Joy Woodhouse. 2015. Worked directly with the age cohort at Callan Park

Retired psychologist who worked for NSW Health and conducted cognitive 30. Neil Macbeth Newcastle Herald testing of patients who lived at Peat and Milson Island from 1965-1967.

Worked at Morriset Hospital, including a group of men who came directly Via a nurse from the Watt Street interviewee 31. De-identified 2 from Milson Island when it closed in 1971. cohort

Participant Relationship to Cohort Recruitment method

Administrators

Director-General NSW Department of Community Services 1990-2000 Referral from Professor Gwynnyth Llewellyn 32. Joy Woodhouse responsible for surviving members of the cohort living in state care. and Robert Fitzgerald.

Medical Superintendent at Grosvenor Hospital (for intellectually disabled 33. Dr Verne Caradus children). Referral from Joy Woodhouse.

NSW Ageing Disability and Homecare (ADHC) executive staff member 34. Tracy Wright responsible for Large Residential Centres in 2013. Former NSW Council for Personal contact. Intellectual Disability (CID) CEO 2017-2018.

The Hon. John Della 35. NSW Minister for Disability, NSW 2005-2007. Referral from personal friend. Bosca

36. The Hon. Peter Collins NSW Minister for Health 1988-1991; Shadow Minister for Health 1986-1988. Referral from Felicity Wilson MP.

Commissioner, NSW Community and Disability Services 1994-1999. President 37. Roger West Referral from Robert Fitzgerald (see below). of the NSW Guardianship Tribunal, 1994-1999.

Former colleague at Royal Commission into 38. Robert Fitzgerald NSW Community and Disability Services Commissioner 1999-2004. Institutional Responses to Child Sexual Abuse

Director, Complaints Unit, NSW Health (1985-1994); Member of the Professor Merrilyn 39. Ministerial Advisory Committee and Review Team, Review of Standards of Referral from Joy Woodhouse. Walton Patient Care in Fifth Schedule Hospitals in NSW (1987).

Inquiry into Health Services for the Psychiatrically Ill and Developmentally 40. David Richmond AO Referral from Joy Woodhouse. Disabled NSW (1983)

NSW Council for Intellectual Disability CEO who had worked at NSW Office of 41. Justine O’Neill the Public Guardian between 2003 and 2018 (including as Assistant Public Personal contact. Guardian).

Participant Relationship to Cohort Recruitment method

Advocates

Parent advocate and vocal advocate for de-institutionalisation in NSW in the 42. Jeanette Moss Referral from Joy Woodhouse. 1980s.

The Hon. Patricia 43. General Secretary of the NSW Nurses Association (Union) 1987-1995 Referral from Joy Woodhouse. Staunton

Pro bono lawyer who was involved in an out of court settlement regarding a 44. Jim Simpson young man who had been allegedly assaulted in respite care at Peat Island Colleague at NSW CID circa 1983.

Former NSW CID CEO 2014-2015. Personal 45. Aine Healy Disability advocate. contact.

46. Wendy Cuneo President, Stockton Welfare Parents Association Newcastle Herald

Stockton Welfare Parents Association. Beth’s brother was admitted to Watt 47 Beth Jacobsen Street in 1954, transferred to Milson Island and later to Peat Island where he Newcastle Herald lived until the late1980s.

Academics

Co-author of an independent report Assessment of developmentally disabled 48 Professor John Taplin adolescents and adults – an evaluation of some aspects of the Richmond Referral from Joy Woodhouse. report (1988).

Professor Adrian Referral from my paternal uncle, John 49 Historian and author of Peat Island: Dreaming and Desecration (2018) Mitchell Andrews, who knows Mitchell personally.

People with intellectual disability who also lived at Watt Street

Lived Watt Street as child 1958-64 (some cross-over with cohort), transferred 50 Robert Strike Personal contact. Stockton 1964-70; Board Director of NSW Council for Intellectual Disability.

4.3.3 Historical material and observation

Historical sources made an important contribution to the project, particularly Ellmoos (2010a, 2010b) and Mitchell (2018). I met with Ellmoos and interviewed Mitchell.

Two publications by Laila Ellmoos, who served as the official historian for the NSW Department of Ageing Disability and Homecare (ADHC) for Peat and Milson Islands (Ellmoos, 2010b) and Stockton (Ellmoos, 2010a), contained some historical materials that I had been unable to access and also provided a useful reference point for my own findings and interpretation. Ellmoos also worked with an oral historian, Sue Andersen (2009), who had been contracted by ADHC and interviewed ten people who had worked or were associated with two of the residential centres (Peat and Milson Islands and Stockton).

Six of Andersen’s interviewees had worked at Peat and Milson Islands. Bob Williams was a nurse at Peat Island from 1989-2010 and the Nurse Manager and Chief Executive from 2008-2010.23 Cheree Goddard was an administrative officer at Peat Island 1970-2001.24 Nurse Norm Dyer trained and worked at Peat and Milson Islands from 1961-1983. Norma Ogoston’s father was a nurse at Peat and Milson Islands from the 1940s to the 1960s, and her mother worked in the kitchen in the 1950s and 1960s. Norma grew up in nearby Mooney Mooney in the post-World War II years and, although she never worked at the island, she had vivid memories of the community and of residents’ visits to her family home in the 1950s and 1960s. Janice Stubbs (whose father had also worked on Peat and Milson Islands) was employed as a laundry coordinator overseeing operations for much of Peat Island from 1974-1989. She had up to 19 residents working with her at one stage. Finally, Margaret Schultz started nursing at Peat Island in 1967 and retired in 1990.

The four Stockton staff interviewed by Andersen25 were Bessie Knox, who worked as a nurse at Stockton from 1939-1980; Rosalie Bagg, who started her nursing training as a 17 year- old in 1962 and was still employed there in 2010; Margaret Lewis, who started work at Stockton

23 I also interviewed Bob Williams and his wife Denise; she worked at Peat Island as an Assistant in Nursing 1997- 2010 and at Casuarina Grove 2010-2013. 24 I also interviewed Cheree Goddard and her husband Alan Goddard; he worked as a nurse at Peat and Milson Islands from 1969-1991. 25 I did not interview any of these former employees at Stockton.

87 in 1959, then worked as a recreation officer in 1964 and retired in 2007; and Jack Chipperfield, a nurse at Stockton from 1950-1981; he also managed the 48 male patients who did much of the hospital’s maintenance work. These interviews were conducted from 2009-2010. As the interview transcripts were provided to me by Laila Ellmoos via personal communication I have cited them as L. Ellmoos (personal communication, May 25, 2018).26

Adrian Mitchell’s (2018) history, Peat Island: Dreaming and Desecration, contributed to my understanding of the site from the late Victorian era, and his account of the political and industrial issues affecting Peat Island in the 1980s until its closure was also helpful.

I also gained valuable insight from visits to Peat Island, Watt Street, and Casuarina Grove. I was unable to arrange access to Stockton as it remains a residential centre for persons with intellectual disability. I visited Watt Street with my mother (Gowlland’s sister), who helped me locate the former sites of the children’s bedrooms, administrative office and school. I was already familiar with Peat Island, having visited on many occasions up to its closure. I also had first-hand knowledge of Casuarina Grove from 2010-2012 as my uncle Ricky Gowlland lived there.

4.4 Ethical Considerations

Ethical approval to conduct the study was initially obtained from the University of Sydney’s Human Research Ethics Committee (HREC) (Number 2016/ 960) in March 2017 (Appendix). As the project involved people with intellectual disability living in NSW government care and access to official personal NSW government records from three government agencies (NSW Health, Department of Family and Community Services, and State Archives and Records), ethical approval was also required from these bodies, as elaborated below.

NSW Health’s policy in relation to research is that, if they support the project, they will endorse a proposal that has been approved by an ethics committee that complies with the guidelines in the Australian National Health Medical Research Council’s (NHRMC) National Statement on Ethical Conduct in Human Research (2007). NSW Health’s main caveat in relation to my access to the children’s files was that, if consent to participate had not been

26 It is my understanding that the Mitchell Library, Sydney, also holds these Stockton transcipts.

88 obtained from an individual or their proxy, that person must be de-identified in the study report. This was the case for ten of the 13 children in the cohort.

The NSW Department of Family and Community Services (the Department) had additional requirements. Following approval of the application by the University of Sydney HREC, the Department requested modifications to the research design. It did not agree to data matching of the cohort’s NSW Health files with their Departmental holdings, as originally proposed, but would allow letters of introduction to be sent to the surviving cohort members still in their care. The appropriate modifications were made and approved by the University of Sydney HREC in July 2018. The Department also required that the University enter into a Research Services Agreement, which was signed in November 2018. Subsequently, the Department facilitated the process of sending letters of introduction to the guardians of the two surviving cohort members for the purpose of interview only.

This study employed relevant HREC approved safeguards to protect the rights and safety of participants. As noted above, government agencies were fully informed about the nature of the project and provided their written consent. To comply with NSW Health’s stipulation, cohort members who had not personally opted into the study were given pseudonyms, based on popular girls’ and boys’ names from the 1950s. As an additional safeguard, no potentially identifiable information, such as birth dates and last place of residence, is provided in the report.

The 50 individuals who agreed to participate in an interview were given the following options in relation to identification: fully identifiable by name, partly identifiable depending on context (for instance, if they wished certain comments to be off the record) or wholly de- identified. Written consent was obtained from all these participants, and each will receive a summary of the study’s findings.

In relation to the children, 10 were de-identified, for reasons discussed. John McFadden gave consent for the use of Michael’s name; John “Ricky” Gowlland’s sister Sue Andrews gave consent for Ricky’s name to be used; and Richard McLachlan’s niece Glenda Miller, as the person responsible, gave consent for his name to be used.

An unanticipated outcome of the interviews with retired nursing staff was that several mentioned instances of patient abuse by fellow staff or patients, as well as examples of senior staff bullying junior staff. I discussed this ethical issue with my supervisors, and it was agreed

89 that any such material included in the thesis would be de-identified. In one case, I wrote to the interviewee, asking that they refer the matter raised at interview to the local police.

Finally, all research materials were stored in a secure office and on a secure single access login drive with the University of Sydney. This measure ensured that only researchers named on the HREC approved application had access to this material.

4.5 Quality Considerations

The quality of qualitative research is mainly established through trustworthiness, which involves issues of credibility, dependability, confirmability and transferability (Guba & Lincoln, 1998; Lincoln & Guba, 1985). This section briefly considers how I addressed these four components.

Credibility requires that the findings are accurate and accountable. To this end, my mixed-methods approach allowed me to generate data from different sources and to examine findings across these sources. For example, my interviews with nurses who worked with the children at Watt Street and interviews with family members of the cohort revealed that these two stakeholder groups recalled the level of family engagement quite differently. Second, my findings are dependable because I used different data sources to represent the diversity of experiences and verify views. Confirmability was addressed via ongoing reflection, note-taking and conversations with both my primary supervisors throughout the research process.

Finally, it is important to note that that generalisability in the statistical sense is not the goal of qualitative case study research. Rather, the aim is to identify ‘thick rich description’ that can provide insight into the lives of the research participants and others who are similarly situated (Schram, 2003). This is often referred to as transferability, that is, how (if at all) and in what ways the understanding and knowledge developed from the case can be applied in similar contexts and settings. According to Patton (1990), case studies should take their “context bounded explorations” and assess the “applicability of findings to other situations under similar, but not identical, conditions” (p. 489). Accordingly, I aimed for transferability of the findings and conclusions to other contexts in which vulnerable people are subject to the impact of various administrative frameworks.

Some potential limitations of the interviews should also be mentioned. First, it is likely that those who were generally proud of their careers in institutional care for people with intellectual disability agreed to participate in the study. This meant that I typically heard from the nurses who had—on the whole—had positive individual interactions with the population. Second, the impact of administrative frameworks might be less visible at the grass roots level. I addressed this issue, particularly with nurses who worked directly with the cohort, by framing questions not so much about the impact of policies and more about the impact of specific programs and activities.

4.6 Summary

This chapter has explained my rationale for the study’s research design—a qualitative, mixed-methods case study of a group of children with intellectual disability who were admitted to Watt Street Hospital in 1952. The study design was informed by a social constructivist world view. The chapter has also described in detail the sources and methods of data collection and analysis, ethical considerations and quality issues.

The study’s findings are presented in the following chapters, each of which addresses a particular stage in the lives of the cohort: childhood, teenage years, early adulthood and work, and retirement and ageing.

Chapter 5: Childhood at Watt Street Mental Hospital

This chapter presents a picture of children’s daily lives at Newcastle Mental Hospital (known as Watt Street) in the 1950s, and explores the impact of the laws and policies that shaped admission to and subsequent experience of the facility in 1952.

The first section describes the legislative and administrative framework that governed admission to and life within Watt Street under the Lunacy Act 1898 (NSW) (hereafter the Lunacy Act). It reports findings from analysis of Watt Street’s Register of Patients and Admission Book (Admission Book) and other data about the 86 children admitted in 1952. Key government social security legislation and various reports are examined to provide further context.27

The second section explores various stakeholders’ perspectives on the children’s experiences at Watt Street, with particular focus on the case study cohort of 13 children who were admitted in 1952. The main sources of data in this section are the children’s patient files and administrative files and interviews with six nurses who worked at Watt Street from the 1950s to the early 1960s and with five siblings of two cohort members, Ricky Gowlland and Michael McFadden.

5.1 Legislative and Administrative Framework

In 1952, NSW families of children with ‘mental retardation’ who could no longer manage their child’s daily care often received a medicalised response from their local doctor or government health and education assessment services. In this period, the care options for a child with an intellectual disability were: family care at home; placement in institutional residential care with a not-for-profit charitable organisation (such as Lorna Hodgkinson Sunshine Home at Gore Hill, Sydney, NSW); or admission under provisions in the Lunacy Act into full-time state care at Watt Street, a government hospital for children with ‘mental retardation’.

27 Report on Mental Health Facilities and Needs in Australia (Stoller, 1955); Reports of the Inspector-General of Mental Hospitals (NSW) (1952-1958) and the Report of the Director of State Psychiatric Services (1959-1961) (collectively referred to as Annual Reports).

In the 1950s, all Australian parents received the Commonwealth child endowment allowance,28 irrespective of income or need, under the Social Services Consolidation Act 1947, but there was no specific payment for parents of a child with disabilities to help meet the additional costs involved, and no other services, such as respite or home care, were available.29 The admission process involved a number of sign-offs by the relative or magistrate who initiated the “scheduling”, as it was known, and two medical practitioners. A Schedule 530 document noting personal details was also required; this was typically filled out by the parent or child welfare officer seeking admission. These schedule documents were forwarded to the Medical Superintendent at the receiving mental hospital, who had the final say on admission.

The Lunacy Act defined an “Insane Person” as

any person who has been found or declared whether by inquisition or under this Act, or under any Act hereby repealed, to be insane or of unsound mind and incapable of managing himself or his affairs (Lunacy Act, s.3).

There was no legislative definition of “unsound mind” or “idiot” in the Act even though it used both of these terms. On the Medical Practitioner’s Schedule 2 form, for instance, the children were admitted as being “insane or an idiot”.

In 1952, a total of 86 children were admitted to Watt Street under the Act. Of these, 82 were admitted by a parent. The remaining four were admitted as ‘wards’ under the care of the NSW Child Welfare Department (CWD). The children’s schedules under the Act comprised: independent medical assessments from two doctors, known as Schedule 2 forms,31 and either a Schedule 3 (Orders)32 form or a Schedule 4 (Requests)33 and all had a Schedule 5 form that noted personal details. All the components of the Schedules were required to legitimise the application and admission process.

28 This was replaced by the Family Allowance in 1976. 29 The handicapped children’s allowance was introduced by the Commonwealth Government in 1974. 30 Schedule 5: Statement in connection with the patient. 31 Schedule 2: Form of medical certificates to accompany order or request for reception into an hospital or licensed house, Lunacy Act 1898 (NSW). 32 Schedule 3: Order for conveyance to a hospital or licensed house (Orders). This was an order by a NSW Magistrate. 33 Schedule 4: I THE undersigned hereby request you to receive (Requests).

In 1954 the Federal Government commissioned Alan Stoller, the Chief Clinical Officer with the Victorian Mental Hygiene Department and consultant to the World Health Organisation, to undertake a national audit of government mental hospitals in all States and Territories and write a report (the Stoller Report). The purpose of the report was “to establish a basis for Commonwealth financial assistance to the States for the further consideration of the Commonwealth and for the future discussion between the Commonwealth and the States” (Stoller, 1955, p. 11).

Stoller (1955) found the legislation governing mental hospitals in most Australian states was inadequate and outdated. The NSW Act, he noted, did not specifically address “mental defectives” but subsumed them under the category “insane”, a practice he considered to be antiquated:

In New South Wales, legislation was typical of the old style Lunacy Acts … There was no Mental Deficiency Act, and no special provisions for such a service. Mental defectives were admitted as “lunatics” (p. 168).

Describing the Lunacy Act as “on the whole a sorry business” (p. 22), Stoller observed that the applicant was required to go through numerous legal processes, including the two independent medical assessments and the use of reception houses for many prospective patients. The process, he commented, was overly bureaucratic and “not in accord with the best interests of some psychiatric patients” (p. 20).

5.2 Patient Characteristics, Watt Street, 1952

Section 27 of the Lunacy Act required mental hospitals to keep a “Register of patients and admission book” (Admission Book). Details of the characteristics that should be recorded on admission were articulated in Schedule 9. This section presents information about the personal, health and demographic characteristics of persons admitted to Watt Street in 1952 based on Admission Book entries.

A total of 88 persons (86 children and 2 adults) were admitted to Watt Street in 1952. These numbers are fairly consistent with the figures for the previous and subsequent years, as shown in Figure 5.1. The reasons for the spike (1954) and dip (1955) in admission numbers are unknown.

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Total Admimssions Total 20

0 1947 1948 1949 1950 1951 1952 1953 1954 1955 1956 1957 Admission Year

Figure 5.1 Newcastle Mental Hospital admission data 1947-1957

At the time of admission in 1952 the children ranged in age from 9 months to 9 years. Seven children (8%) were under the age of 1, including Jennifer and Peter from the cohort. The mean age at admission was four years and four months. Thirty girls and 56 boys were admitted in that year.

The Admission Book also identified the child’s place of residence immediately prior to admission. I have categorised these into three geographic areas within NSW: Sydney region (100 km radius from Watt Street); the Hunter Newcastle Myall Lakes region, which is relatively close to Watt Street; and other areas of NSW. Illegible handwriting prevented identification of six children’s original place of residence. Of the remaining 80 for whom information is known, the majority came from the Sydney region (n=54, 68%). Ten (13%) came from the Hunter Newcastle Myall Lakes area, and other regional and country areas of NSW accounted for the remaining 16 (20%). The religion of each child was also recorded.

The Admission Book required the patient’s “form of mental disorder” to be identified. One or two such “mental disorders” were recorded. The most common diagnosis was

“Congenital Mental Defective (CMD) Sine34 Epilepsy” (n=54, 63%). The remaining 32 children (37%) had a diagnosis of “CMD Cum35 Epilepsy”.

“Mode of departure” from Watt Street was also recorded in the Admission Book. However, the mode of departure was not recorded for 41 (48%) of the 86 children, although it was a statutory requirement36 that the medical superintendent keep a register of patients and their particulars. The modes of departure for the remaining 45 children were given as: death (n=22, 49%), discharge (n=7, 7.5%), or transfer to another government mental hospital (n=16, 35.5%). In other words, nearly half of the children with known mode of departure died whilst living at Watt Street (Table 5.1).

Table 5.1 Watt Street Death Statistics

Watt Street Death Statistics

Total number of deaths 22

Total number of girls 10

Total number of boys 12

Average age at death 3 years and 6 months

Died within one month of admission 11

Died within three months of admission 1

Died within six months of admission 1

Died within one year of admission 3

Died within second year of admission 5

Unknown timeframe of life in institution (no date of death) 1

Seven of the 45 children (15%) with available mode of departure data were recorded as having been discharged from Watt Street. Two of these were noted as having been discharged under s. 97 (“Insane patients may be discharged on friends or relatives undertaking that they shall be taken care of”), including one of the cohort, Gregory, a toddler, who was diagnosed as a

34 Sine is Latin for ‘without’. 35 Cum is Latin for ‘with’. 36 As per s 27, articulated in Schedule 9 of the Lunacy Act.

“Typical little Mongol” in his Watt Street Physical Examination records.37 Gregory’s discharge was approved by the Medical Superintendent of Watt Street and the NSW Inspector General of the Insane, as per the statutory requirements. It was noted that Gregory was discharged into “the care and custody” of his father, “on whose request the discharge is now recommended”. The reason for this was that Gregory’s father’s posting to Australia had ended and his family was returning to their native country.

The entries for the remaining five children read “Discharged … Whilst on Leave (W.O.L.)”. One possible interpretation of these administrative notes is that these children went on s. 90 leave38 with one or both parents, who then decided not to return the child to Watt Street. Discharge would have likely been formalised under the s. 96 provisions in the Act that allowed for the Inspector General or official visitor, on the advice of the superintendent of the mental hospital, to discharge the patient “whether such person is recovered or not”.

Sixteen of the 45 children who had mode of departure data were recorded as having been transferred to other NSW government mental hospitals. This equates to slightly more than one- third (35.5%) of this group. Table 5.2 summarises the transfer data for the 1952 population.

Table 5.2 Transfer of Children from 1952 Admission to another Government Mental Hospital

Transfer of Children from 1952 Admission to another Government Mental Hospital

Number of children transferred 16

Average age at transfer 9 ½ years

Number of girls 5

Average age of girls at transfer 6 ½ years

Transfer destination: Girls Stockton Mental Hospital

Number of boys 11

Average age of boys at transfer 11 years 2 months

Transfer destination of boys Peat and Milson Island Mental Hospital

37 Gregory, a toddler, was formally discharged via an administrative form titled: “Lunacy Act 1898 Secs 96 AND 97, CONDITIONS OR OTHER INFORMATION REGARDING DISCHARGE *”. 38 S 90 leave was a provision that allowed temporary absence from a NSW mental hospital for a designated period of time.

Boys were transferred to Peat and Milson Island Mental Hospital (referred to as Peat and Milson Island) at the average age of 11 years and two months. The girls were transferred to Stockton Mental Hospital (referred to as Stockton) at a younger age, on average six years and six months. Both of these hospitals mainly accommodated ‘congenital mental defective’ adults.

5.3 How Others Saw Watt Street

This section draws on Stoller’s (1955) report and my interviews with six nurses who had worked at Watt Street to contextualise the children’s experiences.

Stoller (1955) described Watt Street as “in part, an institution for mentally defective children over the age of one year, as well as the Reception House for the Newcastle area, turning over some 600 patients a year” (p. 33). He noted that there were 321 patients living at Watt Street but did not specify the number of “mentally defective children” in the patient population. My analysis of the documentary evidence shows that nearly all of the in-patients were children. For instance, of the 88 admissions in 1952 only two were adults, and this trend was consistent across the years.

One of Stoller’s recommendations was that “mental defective” persons were deserving of a different and separate program from what was currently provided by the NSW Department of Public Health, and that this should include community-based services. In 1954 the NSW Department of Mental Hygiene had no outpatient program for “mental defectives”. The only option was admission as inpatients to a NSW Government Mental Hospital, subject to meeting eligibility requirements.

Once admitted to a government mental hospital, there was little interaction with the public: “voluntary activities in hospitals were not encouraged and a picture of isolation of the hospitals, from the communities they were serving, had developed, with resultant inadequate appreciation of community needs” (p. 38).

Some “mental defectives” were living in NSW Child Welfare Department (CWD) Homes. These children were “picked up” by the CWD or through the Education Department. This was the case for Elizabeth who was a ward of the CWD. At the age of five, Elizabeth was transferred to Watt St from Corelli Babies Home, a NSW government facility in Sydney (Find & Connect, 2018). Elizabeth’s Schedule reveals that Watt Street was considered a more suitable placement for her needs:

There were quite a large number of mental defectives in these homes, since they generally were unplaceable elsewhere. Some, of course would get to the Mental Hygiene Department, if troublesome, or too old. (Stoller, 1955, p. 42).

Stoller (1955) also reported that the CWD “was compelled to hold up to eleven gross mental defectives up to the age of one year, as the Mental Hygiene Department could not handle them.” (p. 42). In other words, the Mental Hygiene Department (the Division within the NSW Department of Public Health responsible for mental hospitals) had a role in taking CWD children but not before the age of one, after which they would eventually find their way to Watt Street, probably due to missing milestones (such as readiness for school) and/or behavioural challenges.

Stoller’s assessment of Watt Street provides insight into the nature of the children’s lives in four key areas: health care; infrastructure; education, and family and community engagement. Each of these is elaborated below.

5.3.1 Health care

Stoller described medical provision at Watt Street as substandard. A clinical room adjacent to a male ward was used by a dentist. A small pharmacy was run by the medical staff. However, medical procedures, including surgery, were performed at the nearby Newcastle General Hospital, since Watt Street was set up only as a mental hospital “for congenital mental defective children, including infants, and for inebriates” (Department of Public Health of NSW, 1955/1956, p. 3) and was overseen by nurses.

The medical staff comprised a medical superintendent and a part-time (two days per week) medical officer. Most (53) of the 77 nurses lived on the hospital site and “were trained in the Mental Hospitals Department’s ‘Mental Deficiency’ course, in a special centre in the Administrative Block” (Stoller, 1955, p. 33). At 1:4, the nurse to patient ratio was higher at Watt

Street than in all the other NSW Government mental hospitals and the cost per patient per annum at Watt Street was consistently the highest among general NSW mental hospitals (Annual Reports 1951/2-1960/61). Thus staffing levels can be seen as one of Watt Street’s strengths in the 1950s, and the children would likely have benefitted from the higher nurse to patient ratio.

5.3.2 Infrastructure

Stoller (1955) described Watt Street as “overcrowded”. He noted there were five wards for “mental defectives”: one for male and one for female toddlers, one for “faulty and destructive boys (seven to twelve years of age)” and one each for adult female and male workers (p. 33).

The six Watt Street nurses I interviewed said that each ward housed 30-50 patients: Wards 1 and 2 for babies, toddlers and some very physically disabled children up to puberty (80- 120 children). Ward 3 accommodated 40-50 younger boys (post-nursery to around 10 years). At interview Nurse Coleman noted that Ward 4 was for 40-50 older boys before they went to Peat Island and was described as the ward that “no one wanted to work in”. Ward 5 was not widely discussed by the nurses, but it seems to have been where ‘useful’ post-pubescent patients were kept, that is, those who could perform legitimate jobs as hospital “workers”. The exact number of patients in the wards is uncertain.

The hospital was originally built as a residence for government officials at the turn of the 19th century, later becoming an army barracks and finally, in 1872,

a lunatic asylum … with 120 patients. The major part of the hospital [that housed the children] was still the original barracks building … The wards, besides being ancient, were functionally unsuitable and grossly inadequate … The kitchen was old, poorly maintained and inadequate; the laundry was the same (Stoller, 1955, pp. 33-34).

Nonetheless, most of the nurses noted that the children were well fed and several recalled in detail the meals they were given. Food and feeding, the nurses recalled, was a major focus of their daily work, and was enjoyable for many of the children.

On a more positive note, Stoller (1955) mentioned a “good recreation hall, holding 400, with visitors’ rooms attached, also used as staff rest rooms” (p. 34). According to Stoller and my interviewees, this hall was used for evening concerts and movies. Although “quite a fair amount of recreational activity was available” (p. 34), there was no playground. The nurses also spoke

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about the lack of outdoor facilities, noting that the children tended to play in the concrete “airing yards” adjacent to the dormitory building. Circumstances may have changed in subsequent years. The 1958 Annual Report, for instance, contains a photo of children on play equipment in the grounds of Watt Street (p. 4).

Stoller (1955) concluded that the hospital was “most unsatisfactory … and needed a complete rebuilding” and recommended the establishment of “a proper Mental Defective colony in the Newcastle area, which would need to be integrated with a total ‘Mental Deficiency programme’, and also be related to a diagnostic and out-patient service” (p. 34). These recommendations never bore fruit for the cohort. Indeed, no substantial building works were carried out at Watt Street in the six years after the publication of Stoller’s report (Annual Reports 1954/55-1960/61).

5.3.3 Education

The NSW Education Department provided Watt Street with three school teachers. Stoller (1955) estimated that, of the 320 children living there in 1954, 82-85 (26%) attended some form of education. There was a “well equipped kindergarten” for 25 children.39 A preschool centre was housed “in a poorly maintained weatherboard building, which was handled by an unqualified teacher” (p. 33) and attended by some 30 children. After preschool “[eligible] children went to the Department of Education school, where the best pupils learnt reading and writing” (p. 33). Some 12 to 14 children attended school. Finally, around 15-16 young males, likely from Ward 3 or 4, were being educated at the Occupational School “where a trained mental nurse taught them practical skills … . From this, patients were then filtered to work in maintenance shops, garden, kitchen etc.” (p. 33).40

5.3.4 Family and community engagement

Stoller reported that no extra mural services were provided in NSW’s Mental Hospitals, including Watt Street. Extra mural services are those provided outside of the hospital that aim to stimulate patients and engage them with the community. The nurses also mentioned there were

39 The administrative files of Ricky Gowlland and Christine report that they both attended kindergarten during their time at Watt Street. 40 It is possible that Gowlland attended this Occupational School in his last years at Watt Street.

101 no programs to assist the children to participate in the surrounding Newcastle community (although this changed around 1960). They reported that any external engagement, such as a trip to the movies or visiting one of the nurse’s homes for a meal or an outing, occurred on an occasional basis and was arranged individually. Extra mural initiatives at Watt Street were first mentioned in the 1959/1960 Report of the Director of State Psychiatric Services (1961): “The number of patients allowed to visit the city shops and entertainment unescorted has been increased, and the experiment has been an outstanding success” (p. 16). There was an annual Watt Street fete, which could be considered as an extra mural service.41

Stoller made passing comment about the presence of a parents’ auxiliary at Watt Street. The nurses confirmed that parents and the parents’ auxiliary played a relatively minor role in daily life at Watt Street in the early 1950s. However this is apparently not how many of the parents perceived their role. In the archival materials at the State Library I found meeting minutes from the “Watt Street Hospital Handicapped Children’s Welfare Association” (1959). The Association had an active membership and strengthened its advocacy towards the end of the 1950s. Indeed, cohort member Gowlland’s father, John Gowlland, was the secretary of the Association. By 1960/1961 the Association is recorded to have funded the purchase of a bus.

Stoller (1955) criticised NSW for the outdated services it provided to the “mentally deficient” in its mental hospitals:

Merely providing custodial beds for gross mental defectives or for asocial defectives is inadequate. There is a need for colony training programmes, for hostels for residential employment of defectives under supervision, for management of defectives in the community (p. 40).

He noted that training for staff was inadequate and that there was a “need for more and better trained professional staff, which is a paramount point in any developmental programme” (p. 40).

Following the receipt of Stoller’s Report the Commonwealth introduced the State Grants Mental Institutions Act 1955 (Cth). Under this Act the Commonwealth provided assistance to the States on the basis of a 10/- Commonwealth subsidy for every £1 spent by the States on building or renovation of wards and related accommodation in mental hospitals (Cummins, 2003, p. 113).

41 Photos of the annual fete were contained in the Annual Reports for 1957 and 1960. Staff, patients’ families and local community would typically attend.

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However no major works were carried out at Watt Street during the time that the cohort children lived there (1952-1960).42 Indeed, it is hard to identify any benefits from Stoller’s recommendations for the cohort during their childhood years.

The following section describes the characteristics of the case study cohort of 13 children who were admitted to Watt Street in 1952.

5.4 The Case Study Cohort and Reasons for Scheduling

Detailed information about the sample selection process for the 13 children who make up the case cohort was presented in Chapter 4 (section 4.1.3). A summary of their socio- demographic characteristics is provided in Table 5.3.

To give some context, when Stoller published his report in 1955, the average age of the 13 children in the cohort was 6.5yrs. Three of the children had died by 1954. Young Gregory, who had lived at Watt Street for 3.5 months, had been formally discharged back to his parents in July 1952. Nine of the ten surviving children (5 boys and 4 girls) were still living at Watt Street.

42 In 1956, the NSW Department of Public Health tabled a Schedule Setting Out Building Projects under Construction at Mental Hospitals in the Parliament of New South Wales Only one project at Watt Street was listed in that year: “Lavatory accommodation male Ward 3” at an estimated cost of £1,638. This was in comparison to the seven and ten building projects under construction at Stockton Mental Hospital and Peat and Milson Island Mental Hospital, respectively (Department of Public Health, 1956: 5-6). Many of those building projects involved new accommodation.

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Table 5.3 Cohort Characteristics and Aliases

Diagnosis: Age at Child Welfare Name Gender CMD with or without Parent Status Admission Department epilepsy

1 Ian* 7 M CMD + No Married

2 David* 4 M CMD - No Single, divorced

3 Susan* 3 F CMD - No Single, divorced 4 Jennifer* 10 months F CMD + No Unknown 5 Ricky Gowlland 5 M CMD - No Married

6 Christine* 5 F Down Syndrome; CMD - No Unknown

7 Peter* 10 months M CMD + No Married

8 Gregory* 2 M Down Syndrome; CMD - No Unknown

Mother died before No (but possibly 9 Richard McLachlan 2 M CMD - admission. Father died after father died) shortly after admission 10 Elizabeth* 5 F CMD - Yes Alive on admission 11 Helen* 3 F CMD - No Unknown CMD + 12 Paul* 5 M No Single Behavioral 13 Michael McFadden 5 M CMD - No Married *= this name is a pseudonym

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The Schedule 2 forms required the medical practitioner to distinguish between medical findings from the examination and information supplied by others, usually the child’s parents. If no family was involved for whatever reason, a substitute parent would supply this information.

Eleven of the 13 children’s forms record input from a parent or parents, the exceptions being Elizabeth, a ward of the state, and Richard McLachlan, who had been living at a Catholic orphanage, St Anthony’s Home in Sydney, prior to his admission. The additional information for Elizabeth came from the NSW ‘Child Welfare Department’ and that for Richard McLachlan was provided by the orphanage.

The most frequently cited reason for admission was that the family could no longer cope with the child at home and that an institutional environment could provide the appropriate care and security. This rationale appeared to be the primary basis for the decision to admit, with secondary importance assigned to fitting the then medico-legal criteria of “idiot” and/or “of unsound mind”. Interestingly, relatively few direct references were made to the potential benefits to be provided by the mental hospital, such as nursing and schooling. For example, only three of the 13 children’s Schedules mentioned the potential benefits of the specialised education services available to children at Watt Street (siblings David and Susan and Ricky Gowlland).

There were five main reasons in the Schedules for the applicant’s decision to seek admission. These are elaborated below.

Four of the forms cited the family’s inability to cope adequately with their child’s medical and developmental needs at home or in a mainstream orphanage. David’s Schedule read: “He appears unlikely to benefit by ordinary methods of education and in the absence of anyone able and willing to care for him requires institutional care and control.” David’s father admitted him (the parents were divorced), and his mother was noted on the medical schedule as having “deserted” her child.

In some schedules the child was described as “retarded” and as having medical conditions, such as epilepsy or complex medical issues, which required institutional care. All 13 Schedules referred, directly or indirectly, to the need for care in a hospital, whether or not complex medical issues were present. In Richard McLachlan’s Schedule 2, the medical practitioner responded to the “facts indicating insanity as observed by myself” with: “This Child is two years of age and is unable to sit up, talk, or feed himself in any way”.

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The child’s inability to take care of her/himself according to her/his chronological age was cited in eight of the Schedules. For example, Gregory’s Schedule stated: “He cannot do the simplest of things of a normal child of his age and is obviously so intellectually deficient as to need immediate hospital care and treatment”.

Two Schedules described the child as a threat to her/himself. Ricky Gowlland, for instance, was noted as having “No appreciation of danger”.

Finally, Paul’s mother cited his behavioural and emotional challenges:

My son was a full term child, normal birth. Sat up at 5½ months, walked at 10 months. Started taking fits at nine months. He cannot speak distinctly and is extremely restless and difficult to control. He is spiteful, will kick, bite and bumps his head against the wall and throws himself down in a rage.

5.5 Impact of the Administrative Framework on Childhood at Watt Street

Admission under the Lunacy Act was the most influential event in the lives of all but one of these children, setting 12 of the 13 in the cohort on course for a childhood in state care. The legal concept of parens patriae, or the state knows best, would dominate their childhood years at Watt Street.

The experiences of each member of the cohort at Watt Street were unique. Each child brought their own set of medical, socio-economic and family circumstances. These factors all had a bearing on how they interacted with the system at Watt Street and the administrative system beyond the Hospital. As Malacrida (2015) found in her survey of the institutional years of children and adults with intellectual disability in Alberta, Canada in the 20th century, there is no ‘one size fits all’ experience. Differences were often due to whether someone—a family member, a nurse, a teacher—‘took a shine’ to the child and facilitated his or her agency. As a result, some children got a ‘better deal’ out of institutional life than others.

The following section identifies some of the key legislation and legal concepts that shaped the children’s experiences of custodial43 care at Watt Street. It is followed by a

43 In this context, the term ‘custodial care’ means that the children’s lives were serviced by care and supervision by the nurses rather than a focused effort to ‘cure’ (Your Dictionary, 2014).

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discussion of the children’s experiences of health, family circumstances and relationships with staff.

5.5.1 Parens patriae

Once children were admitted under the Lunacy Act, their lives were governed by its legislative requirements.

Parens patriae is a Latin term meaning “parent of the country”. As a legal doctrine, it grants peak courts, such as the Supreme Court, the authority to protect persons who are legally incapable of acting on their own behalf, thereby making such a person a ‘ward of the court’. The doctrine, which is found in early English common law, enables actions to be taken in the ‘best interests’ of the person. It authorises the court to protect children, the mentally ill, the incompetent, the elderly and disabled persons who are unable to care for themselves (Seymour, 1994). This legislative philosophy of protective paternalism first appeared in Australia with the introduction of child welfare reforms in the late 19th and early 20th centuries (Seymour, 1982, 1988) and was subsequently embedded in the Lunacy Act.

The practical implications of parens patriae and its statutory representation in child welfare depended on the child’s legal status at admission. There were three main categories of legal status:

• An inherent ward of court (true parens patriae), when the court intervenes on behalf of a child,44 • Statutory creations of equivalent ‘state as parent’ powers in the form of state wardships, which confer all guardianship, custody and day-to-day care responsibilities on a state official such as a Minister of State (for children in NSW) or permanent head of Department (as in Victoria).45

44 For example, in a decision dealing with the sterilisation of an intellectually disabled 14-year-old girl in the case of Secretary, Department of Health and Community Services v JWB and Another (1992) 106 ALR 385, the majority of the bench of the High Court of Australia held that whilst the girl’s parents lacked the power to authorise the procedure, a court exercising the parens patriae jurisdiction could give the necessary authorisation (Seymour, 1994, p. 160). 45 For example, children who are wards of the NSW Minister for Child Welfare under the various Child Welfare Acts.

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• Less explicit parens patriae powers expressed through statutory assumptions of state responsibility for residential care, support, and treatment.46

None of the 1952 Watt Street children were in the first category of parens patriae. However, four children fitted into the second category as they were statutory wards under the provisions of the Child Welfare Act 1923 (NSW) prior to their admission. This included cohort member Elizabeth who, prior to being admitted to Watt Street, had been living at a CWD nursing home for ‘mentally defective’ toddlers in Sydney.47

Once admitted, however, all 86 children fitted into this third category. Regardless of whether the child was a ward or had a parent, parental powers of responsibility for his or her custody and day-to-day care were transferred to the state by virtue of admission under the Lunacy Act. For example, both categories of children were subject to the same statutory recording of personal particulars in the Admission Book (s 27 Lunacy Act), transfer (s 88) and leave requirements (s 90).

Once the child was admitted, parents retained limited power under parens patriae but did hold statutory rights. Parents or guardians could seek discharge of the child under s 97 of the Lunacy Act, which provided that “insane patients may be discharged on friends or relatives undertaking that they shall be taken care of”.

Nevertheless, the state was the ultimate decision-maker regarding discharge under s 97 of the Lunacy Act—at the discretion of the Inspector-General of the Insane, on advice of the superintendent or medical officer of the hospital. This dynamic—whereby the hospital and the Inspector-General of the Insane held the ultimate decision-making powers over parents regarding their child and exerted parens patriae—also governed leave requests under s 90 and decisions regarding the transfer of patients to other hospitals for the insane under s 88 of the Lunacy Act. In other words, parents were no longer the primary decision makers for their child and were forced to defer to the hospital for advice and administrative decisions.

46 For example, children under the Lunacy Act 1898 (NSW); today, persons who are placed in involuntary care under mental health legislation such as the Mental Health Act 2006 (NSW). 47 Elizabeth’s NSW Health files; Find and Connect (2019).

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5.5.1.1 Bureaucratic Leave Regulations

The provisions for overnight leave in the Lunacy Act were drafted with adult absconders in mind. Once approved, the onus was on the applicant (that is, the patient’s guardian) to bring the person back to the hospital. In the 1950s, applications for leave involved guardians in a lengthy administrative process. Subsection 90(1) stated:

The superintendent of any hospital for the insane or licensed house may, with the consent in writing of the Inspector-General, send or take under proper control any patient to any specified place for any definite time for the benefit of his health, and also permit any patient to be absent from any such hospital or licensed house upon trial for such period as may be thought fit.

The s 90 Leave Form required three signatures: those of the applicant, the Medical Superintendent of the Mental Hospital and the Inspector-General of Mental Hospitals (NSW). Decisions to grant trial leave had to be in writing, with the undertaking of the applicant (in this case the parent) to

… make due provision for [insert gender] proper care and safe keeping. I also undertake to bring him to the Hospital for examination on [insert date] and or to send a Medical Certificate instead. Should it be necessary for the patient to be returned to Hospital, I hereby take full responsibility for doing so and for all costs that me be incurred in returning the patient.

Only two children in the cohort (David and Michael McFadden) were recorded to have been granted leave from Watt Street. Michael McFadden’s files recorded five occasions of leave during his seven years at Watt Street: going on a family holiday, returning to his family home in Lidcombe, and staying at a family friend’s home in Newcastle. Michael’s experience represented an unusually high level of engagement with his family, and was unique in the cohort, perhaps reflecting his mother’s commitment to him and her ability to deal with the bureaucratic processes.

Michael was formally granted leave on four of these occasions. Mrs McFadden would send a hand-written note requesting leave and the hospital would then formally seek leave via the Section 90 administrative process (that is, the Leave Form). Each of these involved numerous exchanges of letters between the McFaddens and the hospital.

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The importance of leave in family memory was evident in the interview with Michael McFadden’s brother, John, who fondly recalled a summer holiday with his older sibling in Ettalong on the Central Coast of NSW. “I remember that holiday, the car trip to pick up Michael, the winding road, the beach. I have a photo”.

The other child who was granted formal leave was David. Unlike McFadden, there are no S 90 forms on his files. Rather, David’s leave was formally typed onto his Patient Registration Card, which had a section headed “Record of Leave of Absence”. David had a total of ten days leave for the Christmas and New Year period 1953-1954.

The cohort’s files also reveal several occasions on which Watt Street thought it inappropriate to grant leave. The hospital gave the McFadden and Gowlland parents various reasons for discouraging leave on such occasions: the child was recovering from illness; other children had viruses and the hospital did not want the family to get sick; or it was not in the child’s best interest.

In summary, the process of applying for leave was time-consuming and subject to factors outside of the parents’ control. The success of leave applications depended on bureaucratic goodwill and expediency.

A range of statutory requirements also governed the children’s experience of medical care and their ‘mode of departure’ from Watt Street, as discussed below.

5.5.1.2 Statutory medical requirements

Medical issues were a constant concern in the children’s lives at Watt Street. Many had health problems and/or physical disabilities that required medical attention, and this was part of the rationale for their admission. Once admitted, the risk of contracting a communicable disease such as measles was exacerbated by the nature of institutional life. Hence it was not surprising that health was a recurring theme throughout the files and interviews.

The management of a patient’s medical issues was central to the Lunacy Act, which underpinned the whole system. For example, it was a requirement of s 28 of the Lunacy Act that:

In every such hospital the superintendent shall, once at least in every week, enter, or cause to be entered, in a book to be kept for the purpose to be called the medical journal,

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a statement according to the form in Schedule Eleven of this Act, and shall also enter, or cause to be entered, in a book to be called the case book (to be kept in such form and manner as the Colonial Secretary shall direct), as soon as may be after the admission of any patient, the mental state and bodily condition of every patient at the time of his admission, and also the history of his case whilst he continues in such hospital, together with a correct description of the medicines and other remedies prescribed for the treatment of his disorder, and, in case of death, an exact account of the autopsy (if any) of such patient.

Patient files were located in the administrative files of five of the 13 children in the cohort. These typically detailed the child’s “mental state” and “bodily conditions” on admission. The other eight children did not have patient files as such, although limited medical information was recorded.

In general, medical entries after the child’s admission were ad hoc. Some entries were made every other month, some within the month. Entries were not standardised. They were generally statements about the child’s medical condition or, more rarely, about school attendance.

Unsurprisingly, the majority of the cohort was recorded as experiencing a range of illnesses whilst at Watt Street, including skin infections, viruses, respiratory infections, flu, dysentery and measles. Some of these conditions were contagious and readily spread in the close confines of hospital life, and some—such as respiratory infections—posed a potentially serious health risk.

Some children had physical challenges associated with their ‘congenital mental defect’. Michael McFadden had difficulty eating and swallowing and was subject to aspirating food due to poor muscle tone associated with cerebral palsy. He was one of two of the 86 children noted in the Admission Book as living with cerebral palsy. Interviews with the nurses revealed that managing physically disabled children was a large part of the job. Nurse O’Hearn recalled the difficulties of hand-feeding porridge to children: “It was hard for the child when they couldn’t swallow”.

Stoller (1955) noted in his Report that there was a pharmacy on site, suggesting that prescription medication was available there. The nurses recalled that a doctor visited the wards

111 daily, read the nurses’ reports, assessed treatment and decided if any child needed medicine. Three nurses confirmed Stoller’s observation that a child with a serious medical issue would be sent to Newcastle General Hospital for treatment. Gowlland’s files note that he was hospitalised at Newcastle General Hospital twice, once for a virus and once for a broken arm.

The children’s medical challenges were at the forefront of their siblings’ memories. For instance, Michael McFadden’s cerebral palsy meant that he had limited ability to speak, to sit upright, to eat, and even to breathe normally. As his brother John recalled: “I cannot remember him feeding himself”. Indeed, these challenges were part of the family’s motivation to seek his admission.

The perceived need for hospital care also contributed to the Gowlland family’s decision to seek state care for Ricky. His older sister, Sue Andrews, described the hospital as the best place for Ricky’s care:

I think my parents were relieved and happy about Watt Street. I think that at last they felt that he was appropriately cared for. They liked the staff and the opportunity to make contact at any time.

Gowlland’s childhood administrative files showed that he experienced numerous health challenges during his eight years at Watt Street, including respiratory infections, bowel issues, dietary issues (he was noted as being very thin), a broken arm, kidney problems and an emerging hernia problem. Two items of correspondence provide an example of how illness was dealt with by the hospital and the family. On 12 February, 1953, John Gowlland wrote to the Medical Superintendent at Watt Street:

I would appreciate a report on the general condition of my son, John Richard, and in particular with regard to his weight and bowel condition. When we last visited him at Christmas, he was said to be suffering considerably from the above trouble. Do you think it would be of any advantage for us to have him home for a short period with highly specialized diet, or is it your opinion that this would interfere with his routine and not be of any great benefit?

The Medical Superintendent replied the following day:

John [Ricky’s legal first name] is active and happy but is thin and very unstable both as to appetite and bowel condition. Just at present he is taking his food well and attending

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Kindergarten. You could take him home if you wished but as he will need life-long supervision, I do not think there would be any advantage to him in you doing so. (Gowlland, NSW Health files)

These letters reveal parens patriae in action, with Ricky’s father deferring to the opinion of the state-appointed Medical Superintendent about his son’s health and whether it was a good idea for his son to go home for a period.

5.5.1.3 Death and dying

The statutory requirements demanded a medical superintendent’s documentation for a patient’s death, transfer, leave or absence and discharge.48 All the children’s files contained the relevant administrative documentation in these cases.

Many children died at Watt Street. Of the 45 admitted in 1952 for whom mode of departure was known, 22 were recorded to have died whilst in the care of the hospital. Within the cohort of 13 children, three died within six months of their admission. Death was a regular feature of hospital life and was an accepted part of the job, according to the nurses who were interviewed. All of the deaths they discussed were associated with general illness or complications associated with the child’s disability, except for one due to an accidental injury. Two nurses experienced a child dying during their shift. Nurse O’Hearn (née Stone), who was dubbed “Killer Stone” by colleagues after more than one child died on her watch, explained:

There were plenty of kids who died and we used to lay them out ourselves and take them to the mortuary. We used to wash their bodies and find something nice for them to put on. We’d notify the doctor and then it would be out of our hands.

There were a number of references throughout the Lunacy Act about how patient deaths were to be managed and recorded. Section 28 of the Act required the medical superintendent to document “in the case of death, an exact account of the autopsy (if any) of such patient”. Section 30 required the medical superintendent to notify the Colonial Secretary and “relations of the patient”:

In case of the death of any patient in any such hospital, a notice and statement, according to the form in Schedule Fourteen of this Act, respecting the death and cause of the death

48 Sections 30, 88, 90, and 96 and 97, respectively in the Lunacy Act.

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of such patient shall be drawn up and signed by the superintendent of such hospital, and transmitted—in addition to any notice respecting such death required

Other statutory requirements prescribed the documentation of patients’ death in the various hospital medical registers.49

Table 5.4 summarises the information in the files of the three members of the cohort who died within six months of admission.

Table 5.4 Information from Department of Health files on Deaths of Three Children

Indicator Susan Jennifer Peter

Age at death 3.5 years 10 months 11 months

Length of stay at Watt Street Under six months Under one month Under one month

Cause of death noted on patient “Broncho-pneumonia. “Died … Cerebral “Died of cerebral files Measles.” “Apparent agenesis, Epilepsy. agenesis”. develop acute cardiac Gastro enteritis” failure and died”

Of these, the early death of Peter had been anticipated by the Medical Superintendent due to pre-existing health issues, as indicated in his correspondence with the Deputy General of Mental Health in 1952:

Mrs [Peter’s mother] arrived here with a note from Dr [X]. I have told her the position. If we take children under 2 we are just swamped out. However, she has a mother in Mental Hospital [at X], and lives in the country. I have not seen the child. If it is an amaurotic family idiot and likely to die shortly, it might be a fair thing to take it.50

49 That is, Schedule 9: Register of patients and admission book; Schedule 11: Form of medical journal; Schedule 13: Register of discharges, removals and deaths; and Schedule 13: Form of notice of death. Lunacy Act. 50 Peter’s Department of Public Health file.

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It’s likely that Peter’s admission to Watt Street was in response to parental lobbying and the hospital’s pragmatic view that the baby would die shortly after admission (and therefore not be much of a drain on resources) and, perhaps, represented a gesture of kindness by the Medical Superintendent to the parents in their difficult circumstances.

The reasons for the children’s deaths were recorded in several separate administrative documents, retained in all three children’s Department of Health files. The date and time of death was documented in each child’s Mental Health Patient Register Card. Susan’s Patient Register Card noted that two nurses were present when the child died. The Medical Superintendent had sent Susan’s father an “Urgent Telegram” before she passed away alerting him to her imminent death. The telegram stated:

[Susan] critically ill. Please ring Hospital, Medical Superintendent.

Jennifer’s Patient Card noted that a nurse and her mother were present at the time of her death. Peter’s Patient Card also reported that two nurses were present “at the time the child died”.

No post mortem results were contained in any of these children’s files. This was despite the Medical Superintendent’s request for a post mortem to be conducted for all three children at nearby Newcastle Hospital. The Superintendent was complying with the statutory guidance in ss28, 30 and Schedule 14 of the Act regarding the ‘option’ that the superintendent can request a post mortem. Watt Street had sought explicit consent from the parents for autopsy for two of the three children. The Medical Superintendent was clearly disappointed with the situation, as he wrote to Jennifer’s mother:

Dear Mrs [Jennifer’s mother],

We regret we cannot yet send you the report you request as we have not received any details from Newcastle Hospital.51

Without post mortem, the children’s administrative medical records52 are the only sources of information on the causes of their deaths.

51 Jennifer’s Department of Public Health files. 52 That is, their Mental Health Patient Register Card, Mental Hospital Patient Record and Mental Hospital Patient Record of Progress files.

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The children’s burials also required official documentation to be signed by the Mental Hospital, undertakers, burial staff and other NSW Government agencies.53 All these official documents provide a clear picture of the administrative process from death through to burial.

In summary, medical and related documents were an important source of administrative information for three main reasons. First, there were numerous reporting and recording requirements regarding patient medical status under the Lunacy Act. Second, as a hospital, Watt Street was appropriately positioned to respond to and record medical issues. Third, the reality was that many of the children at Watt Street had serious ongoing medical needs.

5.5.2 Expectations of co-contributions

The philosophical approach that underpinned social welfare policy in 1950s Australia was that of ‘co-contribution’. This meant that, although the state contributed through welfare services or social security payments, the individual recipient or guardian was expected to contribute social care, financially and/or in kind (Kewley, 1961, p. 342). This concept had existed at both Federal and NSW state level since the turn of the 20th century. In the 1950s government social welfare policy as it related to children who were ‘retarded’ was pursuant to only one form of social security response—for the child to live in a government mental hospital.

For the Watt Street population, the state provided the hospital accommodation and meals, full-time nursing staff, medical advice and provisions as needed, and (if applicable) education or therapeutic services. Parents or guardians were expected to supplement the children’s hospital costs through their entitlement to the Child Endowment (CE) allowance. From 1947, children living in government mental hospitals were deemed eligible for the CE allowance under the Social Services Consolidation Act 1947 when:

[t]he basis of eligibility for child endowment was changed from maintaining a child to having the custody, care and control of a child. A person making a reasonable contribution towards the expenses of maintaining a child in a government hospital for the insane was deemed to have the custody, care and control of that child (FACSIA, 2004, p 99).

53 Documents on file included: Mental Hospital certificate for the ‘Receipt for Body’ (for two of the children); Mental Hospital ‘Certificate of Internment of Deceased Patient by Undertaker’ (one child); and Death Certificates from the NSW Department of Births, Deaths and Marriages (two).

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To qualify for the CE allowance, parents had to demonstrate that they contributed to the care of the child in a government mental hospital. As long as the person was found to be making a “reasonable contribution”, that person was eligible to receive the CE allowance and, in turn, maintain “custody, care and control” of that child.54

Many of the cohort’s files detail how the system of financial co-contribution was acted upon between the hospital and some parents. Some parents made clothing contributions for their child, which were recorded on “Patient’s Private Clothing” cards. Six of the 13 children had such a card, of which there was a ward copy and a duplicate office copy.55

During Gowlland’s time at Watt Street (1952-1960) there were dozens of entries on his clothing card.56 Entries tended to be seasonal or in response to a request from nursing staff. Elizabeth, who was under the care of the Child Welfare Department, had no clothing file, presumably because the CWD was not expected to make an ongoing contribution to her care and her Child Endowment allowance would have been claimed by the hospital.

While clothes were often documented in this way, it is unclear from the interviews with nurses how often children had the opportunity to wear their own clothing. Indeed, the Forgotten Australians: A report on Australians who expereinced institutional or out-of-home-care as children report found that children in institutions had their private clothing taken after it was given to them. Sometimes the clothing was never seen again, or it was shared with other children (Australian Senate Standing Committees on Community Affairs, 2004, pp. 86-88, 181).

The files showed that clothing was often sent in response to parents’ inquiries or nurses’ requests. Grandparents also sent clothing (to siblings David and Susan; and to Paul). Questions

54 Perhaps this explains the correspondence from the Commonwealth’s Family Allowance Branch Department of Social Services inquiring about Peter and the Gowlland family’s contribution to the upkeep of two children. It might also explain why the hospital recorded, in some detail, the patient’s private clothing and receipts for payments for sundries for some of the cohort. In effect, hospital administrators were documenting that these parents were fulfilling their “reasonable contribution” duties under Commonwealth and State social welfare child and disability policy. 55 Nurses signed the column headed “Remarks, Receipt No, Date, Signature & c. & c”. Nurses would audit the number of clothing items received on admission, conduct stock takes and enter any additional items received or “condemned” the clothing. McLachlan arrived with some items of personal clothing that were later “condemned”. 56 The first, two months after his admission, noted: boots (1), a coat (1), hose [socks] (5), jeans (7), pyjamas coats (3), trousers (6), shirts (4), sport shirts (2), T shirts (5), overalls (4). In 1958 his private clothing was audited five times and the records were adjusted to reflect current clothing and the receipt of new clothing.

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about whether the child was “warm enough” or “had enough” clothing often appeared in communication between the hospital and parents.

Analysis of nurses’ interviews identified five categories of children’s clothing: quality outfits that were brought out of storage for visitors, special events, outings or leave; personal items for daily use, such as hair brushes, shoes, undergarments, overalls and coats, which were provided by parents but which, according to the nurses, often went missing, were used communally, or were misplaced; government-issued clothing (Nurse Wheeler recalls: “The kids would start off wearing their clothes and they would be destroyed”); hospital clothing such as smocks and nightwear; and personal clothing that became part of the communal pool.57 The nurses reported that one of their night duties was to organise the children’s clothing into individual bundles for wear the next day. According to Nurse Coleman, “You could tell which nurse was on nightshift if the clothes in the bundle matched or didn’t match”.

In relation to payment for sundries, some parents made money transfers to Watt Street to

pay for specific items, such as a new winter coat or birthday cake. Eleven of the 13 children had parents as guardians, but in only three of these cases was such payment recorded on their files (Gowlland; Mc Fadden and Gregory). The nurses reported that this money was held in accounts by the hospital and that various measures were in place to control its use.

5.5.3 Family involvement

The level of family involvement in the children’s lives varied. Some children, like McFadden, were visited by family members, and there was regular correspondence with the hospital on their files. Others, like siblings David and Susan, received occasional visits and there was minimal correspondence from their family. Some, like McLachlan and Elizabeth, received no correspondence or family visits during their time at Watt Street.

The amount of family involvement was influenced by a range of factors, including distance from Watt Street, the presence of other young children at home, farm work responsibilities, single parent status, sickness, the child’s problematic behaviour, or parental death. Of the two children whose administrative files recorded no visit or correspondence,

57 For example, after the deaths of Peter and Susan it was noted on their file that their parent had given consent for the child’s clothing to be used by the other children.

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Elizabeth was a ward of the state and McLachlan’s parents had died. The nurses described families who visited often as the ‘exception to the rule’.

These accounts are in contrast to the experiences of McFadden and Gowlland, whose older siblings recalled their parents making regular visits to Watt Street. For example, Sue Andrews recalled at interview that Gowlland’s parents made a monthly visit on a Saturday to see Ricky when they typically ate a picnic lunch in the nearby park. The McFadden siblings also remembered numerous family visits to see Michael, as brother John reported:

It’s the journey I remember, nearly always in the back seat … looking over the seat at my mother … holding a baby (obviously one of my sisters). Dad always drove. I seem to remember the journey because of the interesting (to me) places we passed, whether a steam train on the railway crossing at Lisarow, a yard full of strange statues and objects near the primary school at Ourimbah, water across the highway at Blacksmiths … I remember the grounds at Watt Street, and King Edward Park just outside the hospital grounds … It is the awareness of the physical rather than Michael. It is being in the Ward at Watt Street, and us driving in and leaving, seeing some children including a child with a large encephalic head which shocked me, some sounds and smells, eating fried chips at Gosford or Charmhaven, some visits to friends of mum and dad at Cardiff.

Sue Andrews recalled the monthly daytrip from Sydney to Newcastle to see her younger brother:

My Dad worked for Metters, and a senior manager made sure that they had … a company car every fourth weekend. The whole trip was a big thing … I don’t remember Wendy being there. It was a long drive. I am sure they did visit once a month. They were very disciplined. They were committed to Ricky and making it work, making sure he was supervised accordingly. And doing the best they could. I can remember Mum getting out the picnic rug. We would walk up the street. It was a picnic. It was a feeling of a special time. After, Dad would always make a point of talking, connecting with Matron. Ricky took it all in his stride.

The nurses, however, recollected few family visits. For instance:

Well I never knew of visitors being there. It was not expected. Children were placed there in the care of the hospital (Nurse Adler).

We didn’t really get any visitors at all (Nurse O’Hearn).

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I don’t know that any families came. I don’t think they were encouraged to come (Nurse Coleman).

At Watt Street, there was minimal interaction between family and residents (Nurse Rak).

There were few exceptions:

It was the thing that was the ‘done thing’ then [to leave a child in care]. Little Rosie’s parents would come. But that was it (Nurse Lee).

One mother would come up every weekend. We would encourage the mother to stay [at home] with her other kids (Nurse Wheeler).

Hospital practice appears to have influenced visiting arrangements, encouraging families to visit at weekends. Such prearrangements aimed to ensure that the children were ready and dressed in their own clothing. A parent would request a visit in advance, most by letter but some by phone, and a file note or response letter would be written by the nurse. Nurse Wheeler recalls: “If parents wished to come, they would come; it was very rare”. Visits might be cancelled by the hospital if there was an outbreak of illness. Of the 13 children in the cohort only eight were recorded as receiving any family visit during their time at Watt Street.

Children were visited by their immediate family, including parent(s), siblings and sometimes grandparents. Visits were made for a variety of reasons—as part of a family’s routine, to celebrate the child’s birthday, during school holidays, over the summer break, or to introduce a new sibling. Nurse Wheeler commented that visits were more likely at birthdays and Christmas.

The ‘pet’ system

In the absence of family, some nurses chose to give certain children extra attention. Four of the interviewees referred to these children as “my pet”—the one to whom, in one nurse’s words, they “took a shine to”. Typically, these nurses already had responsibility for that child because they worked in their ward.

Nurses who had “pets” would often include that child in outings and, on occasion, home visits with the nurse’s family. These children also received extra emotional attention during working hours:

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We all had our pets. Some of us took them out (Nurse Adler)

It was hard. You got attached to the children (Nurse O’Hearn).

Most [nurses] … had their own pet (Nurse Rak).

Nurse Coleman recalled her lifelong devotion to her pet Joe, whom she had first nursed as a young boy at Watt Street, “We started taking him out when he was four years old from Watt Street. He was in the nursery [then].” She and her family kept in regular contact with Joe for over 50 years. She pointed out, however that not every nurse had a pet.

Many of the “workers” at Watt Street also had pets. “Workers” was the term used by the nurses to refer to the small group of ‘mentally defective’ teenage or adult women and men who, having lived at Watt Street as children, continued to live there (in Ward 5) and work in exchange for their board and allowance. Some of them were paid. As Nurse Wheeler reported:

You could tell the ones who were paid. They would have cigarettes and Coke.

A small number of male workers performed building and grounds maintenance duties, while the female workers were typically 13 years and older and were assigned responsibilities for a small number of babies or toddlers in Nursery 1 and 2 or for children up to age eight. Their jobs included feeding toddlers, stripping and making beds, and keeping children occupied during the day.

For the children who were pets of the workers, the relationships provided affection and gave meaning to their lives.

The girls helped in the wards to help feed the kids. They had intellectual disability. They would help the staff. I don’t know what we would have done without them. … They had their pets. The nurses had their favourites. Unfortunately, that was the way it went. (Hazel Wheeler, 15/04/2018).

The ‘pet’ system thus played a vital role for some children in the absence of family.

5.5.4 Institutional routines

Finally, the administrative framework created inflexible daily and weekly routines that dominated the children’s lives as Nurse Coleman recalled, “everything was regimented to a timetable”. On the positive side, the children knew what to expect each day. On the negative

121 side, there was little flexibility for individual needs, and the children’s lives were focused inwards and structured by the hospital routine. On occasion, the routine would be punctuated by a special event, such as a dance hosted by the hospital and, for some children, visits and leave. Timetables reflected the needs of the hospital, such as shift changeovers and food preparation and, to a lesser extent, other activities such as schooling during the week. An array of basic custodial needs had to be met each day after the children were woken at 7 am:

The main meal was at lunch time because of the way the institution was run. The night meal would have to be light … By 6:30 p.m. all the kids were pretty much in bed. It was their routine they would stay there. If you liked them you would give them a kiss on the forehead (Nurse Wheeler).

The whole routine really was: eat, sleep, drink … There wasn’t much time to teach [the children] (Nurse Rak).

The children’s lives were largely confined to Watt Street—the wards in which they slept, the dining area, the verandah, the outdoor ‘pen’ play area and, for some, the industrial unit or school. The children were rarely allowed outside Watt Street or, indeed, given access to the large oval within the hospital grounds. Below is my summary of the weekday routine articulated to me by nurse Coleman at interview of her years working in the children’s nursery:

6:30am waking children, toileting, eating, toileting, fresh air in the pen/verandah on a rainy day, school/or not, morning tea, fresh air in the pen/verandah on a rainy day, school/ industrial therapy, lunch, fresh air in the pen/verandah on a rainy day, school/ or not, afternoon tea, fresh air in the pen/verandah on a rainy day, bath, dinner, toileting and bed by 6:30pm.

Weekends and school holidays offered some variation, with no school and the possibility of family visits.

Nonetheless some enjoyable breaks in the children’s routines throughout the year were noted in the Annual Reports (1952-1961), the cohort’s administrative files, and interviews with the nurses. They included evening fancy dress parties, mid- or end-of-year concerts, the odd excursion into the community and the annual fete. For example, Matron wrote to Mrs McFadden on 1 February 1957:

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Glad to know you are well and have a lovely baby. Do not worry about Michael until you feel really well enough, as he is very well and enjoying life. I do wish you could have seen him at the dance last Thursday night, he had more pleasure than any other patient.58

Similarly, the 1959/1960 Annual Report (1961) noted that:

Patients continue to enjoy the latest Cinemascope and Wide Screen film in both16mm and 35 mm versions, fortnightly bus trips and monthly dances. Selected male patients participate regularly in cricket and hockey matches (district competition) whilst younger male and female patients are active in gymnasium and physical training activities with the Y.M.C.A and Y.W.C.A respectively. The number of patients allowed to visit city shops and entertainment unescorted has been increased, and this experiment has been an outstanding success (p. 16).

5.6 Conclusion

The children’s experience of life at Watt Street was dominated by the hospital’s institutional culture and the legislation that governed its operations. Differences in the experiences of individual children were mainly due to their health and family circumstances, and the relationships they formed with nurses and workers in the hospital.

The next chapter presents findings on the experiences of the nine children from the cohort who survived childhood and transitioned to Stockton Mental Hospital for girls or Peat and Milson Island Mental Hospital for boys. The analysis focuses on the impact of the changing administrative frameworks during their teenage years.

58 McFadden Watt Street administrative file letter 1/02/1957.

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Chapter 6: The Teenage Years in an Adult Mental Hospital

This chapter establishes what is known about the nine members of the 1952 population and the cohort who survived childhood and who were transferred into adult hospitals. An overview of the latter institutions from the late 1950s-1960s is given for context. The key NSW and Commonwealth administrative frameworks that informed their teenage years are described, followed by an analysis of their likely impact on the quality of life of the cohort as teenagers.

The discussion covers the years from 1957, which was the mean year for the cohort’s transfer to their adult institution, to 1967, which was chosen as the end point for two reasons. First, in 1966 all cohort members were aged 16 years or older and were therefore eligible for the Commonwealth social welfare payments typically available to adults, such as the institutional pension. Indeed, some of them would have been in receipt of the institutional pension before 1966. Second, a key social security reform occurred in 1967, namely, the extension of the pension to mental hospital patients aged 16 years or over via the sheltered employment allowance. The impact of this administrative change is addressed in the next chapter.

6.1 Leaving Watt Street

The Admission Book provided information about the nature of departure from Watt Street for only 45 of the 86 children admitted in 1952. Sixteen of the 45 children for whom data were available were transferred to adult mental hospitals, 22 children died at Watt Street and seven were discharged back to family/guardian. The mean age at transfer to the adult mental hospital was nine years and six months. The youngest child transferred was female cohort member, Christine, who was five years old, and the oldest was male cohort member Gowlland, aged 14. Transfers took place between 1952 and 1960 (mean year 1957).

Five of these 16 children were girls and all were transferred between 1952 and 1957 (mean year 1956) to Stockton, which had a dedicated ward for younger girls from around age seven (Ellmoos, 2010a). The youngest girl was Christine (five years) and the oldest was Elizabeth (eight years). The mean age at transfer was seven.

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The remaining 11 boys all moved to Peat or Milson Islands. Their mean age at transfer was ten years ten months, just over four years older than the girls. This was because Watt Street had two dedicated wards for older boys—post nursery (Ward 3) and pre-teenage (Ward 4). The youngest was Paul (age 7) and the oldest was Gowlland (14). Transfers occurred between 1955 and 1960 (mean year 1957).

6.2 The Cohort

Information about these nine children in the cohort who survived transfer into their adult mental hospital is drawn from their status at transfer as recorded in the Admission Book, supplemented by information in their Watt Street administrative files.

For five of the nine children, their “mode of departure” entry in the Admission Book is the only information available. However it was possible to develop an understanding of the teenage years for four members in the cohort: Richard McLachlan (from interviews with his niece and Nurse Mcguiness, who had worked with him during his adult life); Gowlland (from interviews with both sisters; there were no files on record for him during his formative Peat Island years from 1960-1967); Paul (from interviews with staff who had worked with him); and McFadden (from interviews with three siblings and full access to his NSW Health files for the year that he lived at Peat Island. Table 6.1 identifies what we know of the cohort at transfer to their adult mental hospital and basic characteristics that would have informed their teenage years.

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Table 6.1 Teenage Cohort’s Characteristics at Transfer to their Adult Mental Hospital

Researcher access to Year of Age at Was the teen a ward, orphan, or Death during Child’s name Gender Medical diagnosis transfer transfer had single parent? teenage years information

11 years & 8 Ian Male 1956 CMD, Cum Epilepsy No Unknown No months

11 years & 1 David Male 1959 CMD Sine Epilepsy No. Single parent father Unknown No month

Ricky 14 years & 3 Male 1960 CMD Sine Epilepsy No No Yes Gowlland months

7 years & 10 CMD, Cum Epilepsy, Paul Male 1955 No. Single parent mother No Yes months Behavioural

Michael 12 years & 6 CMD Sine Epilepsy, Male 1958 No Yes, 28/2/1960 Yes McFadden months Cerebral Palsy

Richard 9 years & 10 Male 1960 CMD Sine Epilepsy Orphan No Yes McLachlan months

8 years & 8 Ward with the Elizabeth Female 1956 CMD Sine Epilepsy Unknown No months Child Welfare Department

5 years & 9 Helen Female 1955 CMD Sine Epilepsy No Unknown No months

5 years & 7 CMD Sine Epilepsy Christine Female 1952 No Unknown No months Mongolism.

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6.3 Stockton and Peat and Milson Islands 1957-1966

This section describes the settings in which the teenage girls and boys lived after their transfer from Watt Street, at Stockton and Peat and Milson Islands, respectively.

6.3.1 Stockton Mental Hospital

Stockton opened in 1923 as a NSW Government Mental Hospital. Its inpatient population peaked at 1,240 in 1961, when the cohort girls were young teenagers (Director of State Psychiatric Services, 1961). The vast majority of patients at that time were female. Stockton is still operating today.

Isolated from the mainland on an isthmus at the mercy of coastal elements, the hospital has a barren appearance. It is visible across the Hunter River from Newcastle and is located some 160 km north of Sydney. The area is flanked by Stockton Beach and the mouth of a river. In the 1950s, there was no direct connection between the township of Stockton and Newcastle. Hospital staff had to get a ferry to work until a bridge opened in 1971. The isolation of the site was symbolic of the barriers that segregated its patients from the wider community. At 208 hectares, Stockton’s grounds were expansive but largely comprised flat, sparsely grassed sandy soil. It was hard to produce anything worthwhile from the animals and vegetable patches that were maintained (Ellmoos, 2010a; Director of State Psychiatric Services, 1957-1966).

The rectangular, barrack-style buildings today look very much like they did in an aerial photo from the 1950s. At that time, most were ward accommodation for 80-100 patients each. There were several buildings for administration, staff accommodation and a facility for occupational therapy activities that had been converted from two ward buildings. In the 1960s, there was a total of 23 wards for patient accommodation, according to Nurse Borg.

Nurse Angela Thomas, who started her nurse training at Stockton in 1961, reported that the Watt Street girls and school-aged children first lived in a ward known as Nursery 3, which was divided into two sections. One was for girls with ‘ability’ who attended the hospital’s school and older girls who went to the training workshop. The other section was for girls with ‘severe disabilities’ who stayed in the ward and were taught basic self-care.

Nurse Thomas spoke of the important role played by the female patient ‘workers’—three mildly mentally handicapped girls—who looked after a small group of girls in Nursery 3,

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helping with laundry, bathing, feeding and interacting: “This was how a lot of their emotional needs [were] met”. Similarly, Nurse Camp, who began her nurse training at Stockton in 1964, commented that the adult female workers “were mothers to those girls”.

There were also wards for physically disabled female patients, female geriatric patients, and intellectually disabled men who worked in the grounds and did maintenance. The remaining wards were for adult women. It was not until 1967 that Stockton admitted male teenagers and adults.

Executive leadership at the Hospital during this period was stable. The leadership of Dr Kinna, who was the Medical Superintendent from 1935-1961, was characterised by a practical focus on occupational therapy with a view to able-bodied patients performing unpaid work within the grounds of the Hospital (Ellmoos, 2010a, p. 67).

Dr Donald Fraser served at Stockton from 1961-1964. The 1963 Annual Report noted the staffing challenges Fraser experienced: “The medical staff needs augmenting with the provision of ancillary paramedical staff such as physiotherapists, social workers and occupational therapists” (Director of State Psychiatric Services, 1964, p. 23). Subsequently, Dr Fraser successfully introduced 30 ‘ward maids’ in 1964, which allowed nurses to focus on their core duties. Two of my interviewees, nurses Val Forbes and Redmond Borg, started their careers at Stockton as ward maids.

Dr Brian Cook served as Medical Superintendent from 1964-1969. According to Ellmoos (2010a), his aim was to transform Stockton into “an intensive training centre for retarded people of both sexes” (p. 80). Cook was remembered by Nurse Forbes as an innovative leader who implemented new ideas regarding the de-institutionalisation of patients who could live in the community.

The Matron in charge during this era was Bessie Kromarty,59 whose leadership style established the nature of the work culture in the wards. According to the nurses who worked under her, Matron Kromarty had high expectations of her staff: “She was the boss. … feared more than revered” (Nurse Camp). Similarly, Nurse Forbes commented:

59 Kromarty started her nurse training at Stockton in 1934 and served as a nurse in WW2 in Papua New Guinea from 1942-1945, after which she returned to Stockton. She was promoted to Matron in 1958 and remained at Stockton until her retirement in 1970. She never married; her life was the hospital.

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There were very high standards expected of me, Matron down. It was clean and tidy. Matron would visit twice a day so you had to be on your toes.

Matron’s focus was on ensuring the wards were efficiently run, clean and tidy. Patients were expected to be bathed, fed and clothed. Nurse Camp recalled that Matron’s detailed inspections included the assessment of the lengths of their skirts and that she would “check all the [individual] nurses’ reports”.

The employment of nurses at Stockton peaked in 1964 (Ellmoos, 2010a, p. 78). According to the nurse interviewees, there were two distinct profiles: a group of older, senior women, including some post-war migrants who had received nurse training in Europe before the war, who maintained a hierarchical leadership style; and a younger group of newly recruited female nursing trainees.

6.3.2 Peat and Milson Islands

‘Rabbit Island Hospital for the Insane’ was established in 1911 and renamed Peat Island in 1936 to accommodate men and boys transferred from Watt Street (Ellmoos, 2010b, p. 27). In 1924, nearby Milson Island was acquired to supplement the facilities at Rabbit Island (p. 29). In 1940 the mainland directly opposite Peat Island was acquired to offer more space for patients and accommodation for staff. Milson Island remained part of the hospital until its closure in 1972. Peat Island was operational until it was decommissioned in 2010.

Located about 50 km north of Sydney’s CBD, Peat and Milson Islands are some five kilometres apart on a relatively isolated stretch of river. The two island hospitals sit on a relatively small saltwater river system known as the Hawkesbury River. At 12 acres, Peat Island is considerably smaller than Milson Island at 76 acres. Until the late 1950s Peat and Milson Islands attempted to be largely self-sufficient by farming their own produce. Vegetables and fruit were grown on Peat Island, and attended to by staff and patients. Some meat and bread was regularly delivered to the nearby Brooklyn train station.

The buildings on Milson Island were ad hoc. The site was originally set aside for male inebriates but was never built for that purpose. Rather, it evolved over time for various uses: as a bacteriological laboratory, a temporary quarantine station, a hospital to treat soldiers from WW1 affected by venereal disease and, finally, as an adjunct to Rabbit Island as a Hospital for the

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Insane in 1924. Although the original plan was never realised, these buildings subsequently accommodated the cohort. Cohort member Michael McFadden lived in Ward 5 at Milson Island from 1959-196060 and Paul was also understood to have lived there. The quality and suitability of the buildings during that time were criticised in historical accounts (Ellmoos, 2010b; Mitchell, 2018) and by several interviewees.

Milson Island had a resident population of about 300 in the 1960s (Mitchell, p. 128), with Ward 5 housing about 100 of the most severely physically disabled males. Historical documents cited its noisy, unlined iron roof and cyclone fencing, which gave the building a “cage-like” appearance. The Administrative Officer to Dr Lindsay, Cheree Goddard, recalled at interview that: “The clients on Milson Island didn’t have much public contact. It was totally different” (2018). For all these deficiencies, Milson Island had enough space for an oval, a large hall and room for most patients to move around freely, which set it apart from the smaller Peat Island. Families did not visit Milson Island, but waited to have their family member ferried to the visiting rooms on Peat Island.61

Peat Island was the administrative centre for the two Islands. In 1957, a road was built to connect Peat Island to the mainland. Peat Island had more amenities, such as a canteen and swimming pool, and was visible from the Freeway and Bridge. Although isolated, Peat Island was more connected to the surrounding community than Milson Island.

An average of 521 men and boys lived at the Hospital during the boys’ teenage years. In 1961, one-third of the patients were under 20 years of age (Ellmoos, pp. 60-61). From the available accounts, patients at this time were not separated by age, except for those in the ward for the physically disabled at Milson Island. There were five wards across the two Islands, each housing more than 100 patients (Mitchell, 2018; Stoller, 1955).

Little is known about how the leadership impacted on patients during the cohort’s teenage years.62 Dr David Lindsay was appointed as the first resident Medical Superintendent

60 Michael McFadden NSW Department of Public Health administrative files. 61John McFadden interview 2018; McFadden parent correspondence on Michael McFadden’s NSW Health administrative files; Wood 2007. 62 From 1947-1961, Mr Norman Sharpe was Manager of the Islands. During Sharpe’s tenure, Dr Sandbrook was the Islands’ visiting Medical Officer, 1947-1966 (Ellmoos pg 43, Mitchell pg 122). From 1960-1965, a registered mental

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for the Hospital in 1965. He was remembered as a man who focused on Hospital order rather than the emotional well-being of patients. His reforms were mainly driven by a desire to improve the training of patients (Mitchell, 2018, pp. 122-126). The staff were predominantly male from the time of the boys’ transfer until they reached adulthood. Females were rarely present.

The program offerings at Peat Island expanded during the boys’ teenage years. By the mid-1960s there was a well-established Department of Education Hospital School and an industrial therapy unit where patients participated in a range of activities. Patients could engage in work around the grounds and various recreational activities were on offer. According to the 1966 Annual Report, the focus of Peat and Milson Island Mental Hospital was shifting from custodial care to “one where there was increased emphasis placed on education and rehabilitation of the patient” (Director of State Psychiatric Services, 1967, p. 46). The positive impact of the auxiliary movement on the teenage boys during this period cannot be underestimated, as discussed in a later section.

This section concludes with an account of the experiences of one member of the cohort on Milson Island during his teenage years.

6.3.3 Case Study: Michael McFadden

This account of Michael’s experience draws on nurses’ notes in his administrative files, family letters and interviews with his siblings. Despite a childhood marked by physical and health challenges associated with cerebral palsy, Michael seems to have had a relatively positive experience at Watt Street. He had difficulty walking, sitting, eating and swallowing food but, aside from general colds and viruses, no major health episodes were recorded during his childhood at Watt Street, in stark contrast to his later experiences at Milson Island.

Michael was transferred from Watt Street to Peat and Milson Islands on 28 December 1958, aged 11 years. Michael lived in Ward 5 on Milson Island (known as the ‘ambulant ward’) with boys and men who had severe physical disabilities. Nine months after his arrival, he suffered a serious grand mal epileptic seizure, the effects of which are likely to have compounded his eating difficulties and contributed to his subsequent weight loss. His health

health nurse, Mr K. N. Dwyer, was the Hospital Manager. I could not locate any primary research material on the impact of his tenure.

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continued to deteriorate. He was transferred twice from Milson Island to Parramatta Mental Hospital, where he died aged 13 in 1960.

Michael’s siblings clearly recall visiting Peat Island and Michael’s deterioration there.63 During these visits, the family noticed Michael had lost weight, his appearance was scruffy, his nails filthy and he was not wearing his own clothing. The standards were well below what they had observed during the Watt Street years. In mid-October 1959, after one such visit to Peat Island, Mr and Mrs McFadden made a formal complaint about Michael’s quality of care to the Medical Superintendent at Peat and Milson Island. His sister Mary recalled visiting:

I remember, he had dirty nails. Mum was really upset because he had dirty nails, he had messy hair, he looked unkempt … I remember her being upset.

Formal correspondence was subsequently exchanged between the McFaddens, the Manager at Peat and Milson Islands, and the Superintendent of Parramatta Mental Hospital. An internal investigation of sorts followed, with statements gathered from the nurses responsible for Michael’s care in early October 1959.64

The McFaddens were not satisfied and took their concerns to their NSW Member of Parliament. As a result, Michael was removed from Milson Island and transferred to Parramatta Mental Hospital, near where the McFaddens lived, with a view to moving him to Gladesville Hospital once a bed was found. Nonetheless Michael was returned to Peat and Milson Islands for two weeks in early December 1959, then transferred back to Parramatta, where his health rapidly declined and he died six weeks later. His death certificate,65 dated 1 February 1960, reads:

Cause of death: Epilepsy. Months. Cerebral degeneration. Years. Duration of last illness: Malnutrition. Months

It is impossible to estimate the extent to which the conditions at Milson Island— overcrowding, staff-to-patient ratio, leadership and hospital culture and the questionable quality

63 A family photo taken at Peat Island in 1959 shows Michael with his mother and sister Mary on a family visit. Mrs McFadden is looking at Michael, who is sitting on the bare ground, with a sense of maternal apprehension. 64 As part of my archival research I cited response statement from the nurse who tended to Michael on the day of the family visit that was subject to the formal complaint. This statement also describes the process of patients coming down on the ferry from Milson Island and dressing the patients in their own private clothing (removing government clothing) for the purpose of a family visit. McFadden, NSW Health files. 65 A copy of Michael’s death certificate was cited. McFadden, personal files. 132

of nursing care—contributed to his decline. Nonetheless it was clear from my analysis of his files that these factors played an important role.

6.4 Legislative and Administrative Framework

The cohort’s teenage years coincided with several administrative reforms in NSW that resulted from a number of critical parliamentary and government reports. Coupled with changes in medical thinking about care for people with mental illness and the ‘intellectually handicapped’, these reports delivered progressive changes to the way in which NSW mental hospitals functioned. For the cohort, these amounted to a shift from custodial care to a focus on education and training, with a view to rehabilitation into the community (for a limited few).

6.4.1 Commonwealth

There were limited administrative reforms at Commonwealth level during this period, with existing statutes and social security provisions from the 1940s remaining in place and applying to the cohort. These were the Child Endowment (CE) Allowance,66 the Institutional Pension, and the State Grants Mental Institutions Act 1955 (Cth).

Patients who did not qualify for CE had their board and living costs subsidised by the Commonwealth via the Institutional Pension (IP),67 which was paid from the Commonwealth direct to the State and, in turn, to the mental hospital.68 The Institutional Pension was a universal, non-means-tested payment for all eligible patients living in mental institutions Mental Institution Benefits Act 1948 (Cth) sch, cl 5.

The States Grants Mental Institutions Act 1955 (Cth) was introduced in response to Stoller’s Report (1955). Under this Act, the Commonwealth provided assistance to the States by way of a 50% contribution towards the costs of approved capital building works at government mental hospitals (Cummins, 2003, p. 113).69 Although the program helped many NSW mental hospitals to build new accommodation for patients and staff and renovate existing building stock, in practice, these subsidies were under-subscribed (New South Wales Royal Commission on

66 Social Services Consolidation Act 1947 (Cth). 67 The terms of the Institutional Pension’s intergovernmental agreement were outlined in the Mental Institution Benefits Act 1948 (Cth). The Act was repealed in 1981. 68 Schedule Mental Institutions Benefits: Heads Agreement (sch). 69 The States Grants (Mental Health Institutions) Act 1964 (Cth) effectively replaced the State Grants Mental Institutions Act 1955 (Cth) in 1964.

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Callan Park Mental Hospital, 1961, p. 18), apparently due to lack of coordination between the Departments of Public Health and Public Works.

6.4.2 New South Wales

Cummins (2003) identified two key administrative catalysts for the changes in NSW: the introduction of the Mental Health Act of 1958 and the Royal Commission of Inquiry into Callan Park Hospital in 1961.

The Mental Health Act 1958 (NSW) replaced the Lunacy Act 1898 (NSW) (Lunacy Act). From an administrative perspective, the new statute appears to have had little practical effect, although the patients were now legally considered ‘voluntary’, whereas they had been ‘involuntary patients’ under the Lunacy Act.

Three NSW government affiliated reports led to changes in practice in the State’s mental hospitals. These are discussed below in chronological order.

First, the Royal Commission of Inquiry into the Callan Park Hospital (Hon Mr Justice McClemens Royal Commissioner, 1961) (Callan Park Inquiry) had a net positive effect on patients living in NSW mental hospitals during the 1960s. The impetus for the Inquiry came from adverse newspaper articles about the state of Sydney’s Callan Park, Australia’s largest mental hospital, in the late 1950s (Director of State Psychiatric Services, 1962, p. 6). There were accusations of failures in patient care, staff involvement in theft, and gross overcrowding.

The Department of Public Health responded to the setting up of the Callan Park Inquiry by establishing a new leadership position of Director General of State Psychiatric Services and appointing a NSW Health Advisory Council (Council), which had the “objective of integrating and co-ordinating those [mental health] services in the Public Health and hospital programmes of the State” (Director of State Psychiatric Services, 1962, p. 6).

The Council went on to publish three reports, including the Third Interim Report of the Health Advisory Council Intellectually Handicapped Persons (1962) (Health Advisory Council, 1962). The Third Interim Report (Report) noted that “existing services are inadequate to meet the legitimate demand” and “additional facilities must be provided by Government and voluntary agencies” (p. 1). Its recommendations set the aspirational policy tone for NSW in the early 1960s:

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Intellectually Handicapped persons should have available to them facilities for diagnosis, counselling for parents, care and training, appropriate schooling, vocational guidance, vocational training, employment and social needs (p. 1).

The Report made specific recommendations for improving hospital care for those living in mental hospitals at Stockton and Peat and Milson Islands, noting that these hospitals were “used almost exclusively for the care of intellectually handicapped persons” (p. 16). The Council recommended the size of the “intellectually handicapped” population in its mental hospitals be reduced to a maximum of 350 in any one facility and a reduction in the number accommodated in each ward. It also recommended that all intellectually handicapped persons living in mental hospitals be “classified” to ensure they were living in appropriate accommodation and that institutions should no longer be referred to as ‘hospitals’ nor its occupants as ‘patients’, but rather as ‘training centres housing ‘residents’. Policy and program focus was to switch from hospital care to education and training.

The Report introduced a four category classification system that was adopted in subsequent departmental policies. Mildly intellectually handicapped persons could, “as a rule”, live satisfactorily at home with their parents or guardians. Moderately intellectually handicapped persons could also, with the help of education and/or special care facilities, be cared for at home. The third group comprised mildly or moderately intellectually handicapped persons who had additional handicaps such as “behavioural disturbance” who could not be cared for at home or in a normal children’s institution. Finally, severely intellectually handicapped persons, by the nature of their disabilities, were totally dependent and required constant residential care (p. 2).

Those in the last two groups were said to need residential and/or hospital care. As “residents”, they were to live in “villa-type buildings” accommodating no more than 30-36 persons. Unlike the situation that prevailed at Peat and Milson Islands at this time, it was recommended that children and adults live separately. Buildings were to have “sufficient staff to enable a homely atmosphere to be created” (p. 16).70

70 These recommendations for downsizing hospital dormitories and introducing a less institutionalised, more “homely” living environment would not be realised until the late 1960s and 1970s.

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The Council also recommended in the Report a policy shift away from a wholly medical response to a new model oriented to social and rehabilitative care. Future recruitment of staff at the two mental hospitals was to reflect this new approach:

The concept of all members of staff in training unit fulfilling the role of a nurse is erroneous. Nursing staff will be required in certain situations only where hospital care is predominant. The general role of staff should be rather that of mothering, educating and training, and persons should be selected for employment with these objectives in view (p. 17).

In other words, traditional nursing would take a back seat and the emphasis should be on socialisation, education and training for residents, who should be taught the appropriate skills by staff with a broader knowledge base. The presence of female staff was recommended as “a woman’s influence in a training unit is of inestimable value, and at least one female member of staff should be attached to each villa or residential dorm” (p. 16). This recommendation may have led to the introduction of female staff at Peat and Milson Islands in 1964.

The Report of the Inter-Departmental Committee of the Provision of Psychiatric Facilities for Children Whose Care Has Become the Responsibility of the State (IDC Report) (NSW Inter-Departmental Committee, 1963) confirmed the inadequacy of existing accommodation and overcrowding in mental hospitals for children and young people with disabilities and the need for more beds for the large numbers of intellectually handicapped children on waiting lists for admission—up to 18 months at Peat and Milson Islands (p. 27). Because a large number of those awaiting admission were, like cohort member Elizabeth, wards with the Child Welfare Department, the IDC called on the Department of Public Health to “wherever possible [give] some priority … to Child Welfare Department cases” (p. 12).71

Recommendation One in the IDC Report called for additional resources and construction of suitable accommodation at the state’s mental hospitals to accommodate the waiting list of children and alleviate the poor state of existing accommodation:

We recommend that both Departments increase the tempo of their normal building programmes in so far as the State’s financial resources permit so that overcrowding, lack

71 This recommendation reflects the practice whereby child wards were accepted for admission under the mental health provisions with administrative discretion.

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of segregation and/or scarcity of accommodation within the range of facilities now being provided may be overcome as quickly as possible (p. 18).

It is worth noting that the IDC Report recommended the building of new accommodation to facilitate children’s admission, in contrast to the de-institutionalisation rhetoric noted in the Annual Reports from the 1960s.

In summary, all three NSW government reports reflected the new philosophical position in relation to intellectually handicapped persons and their care. Each informed the policy debate and, in the case of the Callan Park Inquiry, set the policy agenda for program reform in mental hospitals at the NSW level throughout the 1960s.

6.5 Impact of Administrative Frameworks on the Cohort’s Teenage Years

Everyday life in NSW mental hospitals through the peak years of institutionalisation was characterised by overcrowding, stretched resources and a regimented and medicalised approach to patient ‘care’. The legal and administrative changes discussed above can be seen to have impacted on the cohort’s teenage years in four main areas: responses to overcrowded living conditions; changes in staffing profiles; the introduction of new activities programs; and the positive contribution of auxiliary groups to the development of these new offerings. Each is elaborated below.

6.5.1 Responses to Overcrowding

The patient population in NSW mental hospitals peaked at 12,717 in 1961/1962. This fell to 11,700 in 1966 and continued to decline in subsequent years due to lower admission rates, discharges and deaths. By 1959, all the males in the cohort, except Gowlland, were living at Peat and Milson Islands, where the total male patient population in 1956/1957 and 1958/1959 was 611, decreasing to 504 by 1966/1967. At Stockton, the number of female patients peaked at 1,240 in 1960/1961 and declined to 1,082 by 1966/1967.

Overcrowding had become an operational issue by the late 1950s, especially at Peat and Milson Islands. Table 6.2 summarises data from the Annual Reports from 1959/1960 to 1960/61, which indicate that the population reached “an overcrowding index” of 20%.

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Table 6.2 Mental Hospital Patient Accommodation, Capacity and Overcrowding

NSW Mental Patient Actual patient Overcrowding Overcrowding Year Hospital accommodation numbers (number) (%)

Peat & Milson 461 557 96 21 Islands 1959/1960

Stockton 1,168 1,226 58 5

Peat & Milson 461 566 105 23 Islands 1960/1961

Stockton 1,176 1,240 64 5

Source: Director State Psychiatric Services, NSW, Annual Reports, 1959/1960-1960/61.

The Government’s response to overcrowding included building and renovations, attempts to increase staff levels, transfer of patients and de-institutionalisation of some patients.

6.5.1.1 Building and maintenance

During the 1960s building work in NSW mental hospitals increased as a result of three main factors: complaints of overcrowding by medical superintendents and the Director of State Psychiatric Services in the Annual Reports; the availability of the Commonwealth’s building subsidy, as discussed earlier; and the recommendations of the Callan Park Inquiry.

In 1959-1960 building works at Stockton included a canteen, a new female ward, a staff amenities block and medical officer residences. By 1961 it was noted that this initiative had brought “considerable relief from the current overcrowding” (Director of State Psychiatric Services, 1962, p. 4). However, most of the work during the cohort’s time at Stockton involved maintenance, including remodelling of the laundry and kitchen, repairs to water and telephone services, and a new boiler and stack (p. 11).

Peat and Milson Islands also witnessed a fresh wave of construction in 1959/1960. Work began on new wards and a new residence to accommodate an additional on-site medical officer. Yet problems remained:

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Sections of Milson Island are bad especially roofs, whilst bathing and toilet accommodation at Peat Island requires a complete overhaul and remodelling. This work has been delayed through lack of funds (Director of State Psychiatric Services, 1961, p. 16).

Ward accommodation was also problematic. Young Bourke Gibbon’s sleeping arrangements were described thus:

A wooden verandah, which itself was fenced, led to the dormitory. Inside both sides of the door were flanked by two rows of beds facing each other. There were 12 beds altogether. A small grey hospital cabinet with one drawer stood next to each bed… He, a mere child was to share this space with 11 deranged, old men (Wood, 2007, pp. 56-57).

6.5.1.2 Staffing

Recruitment, particularly of female nurses, was difficult across the state. The Director was disappointed to report:

There has been a marked reduction in the number of nurses employed and in training and this is bound to worsen a situation which has been causing disquiet for some years (Director of State Psychiatric Services, 1961, p. 9).

Even so, staff levels at both hospitals did increase, including nurses and specialist allied health practitioners, but numbers were still insufficient. According to the Medical Superintendent at Stockton:

The establishment now includes four full-time medical officers, a psychologist and a physiotherapist. In addition the hospital has benefitted from the appointment of a chiropodist. A member of the nursing staff has been selected for the position of Welfare Officer. Numbers are below establishment and are characterised by a relatively large turnover (Director of State Psychiatric Services, 1967, p. 49).

The impact on the cohort was that, while staff to patient ratios remained low, the programs could not be fully implemented at Stockton in 1964/1965 (Director of State Psychiatric Services, 1967).

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6.5.1.3 Transfer of patients

Some patients were transferred to address the problem of overcrowding. An entry in the Annual Report (1961) notes: “Some relief was given by the transfer of 35 patients [from Milson Island] to the Mental Hospitals, Callan Park. Nevertheless, overcrowding still exists” (Director of State Psychiatric Services, 1961, p. 16).

6.5.1.4 De-institutionalisation

The 1963 Annual Report recommended de-institutionalisation of patients, citing several factors. First, “continued hospital care may be bad for many patients, promoting regression and destroying initiative and independence” (Director of State Psychiatric Services, 1963, p. 5). Second, “the preservation of close ties with family, friends and community may make the difference between success and failure of treatment” (p. 5). The third benefit was cost savings. By the decade’s end, fewer patients were living in mental hospitals.

6.5.2 Changes in Staffing Profiles

The new decade saw other positive developments. Nurse Norman Dyer recalled:

It was an evolving sort of time because … prior to the 1960s a lot of the old draconian styles of care for handicapped people was in vogue and towards the middle of the 50s and early 60s things certainly started to change quite a bit (cited in Andersen, 2009).

Social attitudes were also changing. In the 1962 Annual Report, the Director of State Psychiatric Services (1963) noted an “awakening in the community a sense of responsibility towards the mentally ill” (p. 70). The new thinking supported the introduction of recreational activities for patients off-site. There was also a new focus on the individual:

Standards of physical care have continued to improve during the year. More importantly but less tangible has been the extension of the liberal approach towards the management of patients. Patients, generally, are being accorded a higher degree of freedom and individual responsibility (p. 7).

In particular, the introduction of new staff and activities had a direct impact on residents’ and the cohort’s quality of life. The early 1960s saw substantial changes to staffing profiles and roles in the mental hospitals that catered for ‘intellectually handicapped’ persons. Clinical psychologists were appointed at State level and in some mental hospitals to undertake

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psychometric diagnosis and classification of patients and to “assist the nursing instructors by giving lectures and demonstrations, as well as forming part of the clinical team (Director of State Psychiatric Services, 1961, p. 8). The appointment of activity officers, along with the contributions of the auxiliaries, resulted in new recreational activities for patients, including greater community interaction. Occupational therapists were employed to assist patient rehabilitation. The Department of Education increased resources to provide more options for patients in its mental hospital schools. Education and training opportunities for specialist nurses and doctors were also upgraded.

Mental hospitals also experimented with the introduction of new specialist positions for nurses and a male and female nursing workforce. In 1964 at Peat Island, for example, two female nurses with previous experience in dental work assumed the duties of “oral hygiene”. The Manager of Peat and Milson Islands reflected that: “There was a noticeable improvement in the behaviours of patients following these additional staff appointments” (Director of State Psychiatric Services, 1966, p. 15).

At this time the role of psychiatric nurses was also under consideration. The Acting Director of Psychiatric Services identified five components to the work of psychiatric nurses: domestic work, basic nursing care, parental supervision, general nursing, and psychiatric nursing (Director of State Psychiatric Services, 1964, pp. 11-12). “Parental supervision” was another manifestation of parens patriae that was in practice at NSW’s mental hospitals:

The psychiatric nurse more than the general nurse is called upon to supervise many long stay patients in much the same way as a parent must supervise a child. Assistance is frequently required by a patient in feeding, organisations of daily living, programming of social and recreational activities. Once again, however, these are not duties which are unique to the psychiatric nurse. They may equally well be performed by nursing aides, both male and female. Many women who have raised families of their own fit excellently into this role of parent substitute (p. 11).

This could be both positive and negative for the patients. According to several nurse interviewees, female staff who were liked by a male patient would often be affectionately called “Mum”.

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Another significant change was the introduction of female domestic workers in all wards at Stockton, which the Medical Superintendent at Stockton Hospital described as “[a] new phase” (Director of State Psychiatric Services, 1966, p. 18). Thirty “ward maids” began working in all the wards at Stockton in 1964, allowing nurses to focus on their core duties, with likely benefits for the teenage cohort. The ward maids were essentially domestic staff who performed cleaning and general upkeep duties but could also assist nurses with patient feeding, toileting and bathing and any other tasks assigned by nursing staff.

Leadership, in the form of medical superintendents and hospital managers, had a direct impact on program decisions, staff attitudes and, in turn, the daily lives of the teenage cohort. For example, the 1960 edition of Waratah Magazine reported innovative practices at Peat Island:

The effect of colour on the patients in this Hospital has been most interesting. Throughout the hospital the wards, fences and sporting equipment have been multicoloured in suitable bright tints, shaded here and there to obtain a balanced effect. The results have been that the surroundings are bright and cheerful. This has been borne out by the patient’s interest in work being carried out and their enthusiasm for a particular colour. A patient who is a deaf mute has a very forthright method of demonstrating his feeling towards a particular colour.

Although it would take most of the decade for these shifts in philosophy and policies to be fully implemented in the hospitals where the teenagers lived, these changes in staffing profiles supported the introduction of new activities for the teenagers.

6.5.3 New Program Offerings

Program options for the teenagers expanded throughout this period. These included, in levels of likely engagement for the cohort: recreational activities, industrial therapy, schooling, and work within the hospital. Depending on their capacity, the teenagers may have been involved in one or more of these programs.

6.5.3.1 Recreational activities

There was an increase in recreational activities for patients in NSW mental hospitals throughout the late 1950s and, by the mid-1960s, structured recreational activities aimed at

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engaging, stimulating and socialising patients had become part of the standard programs at both Stockton and Peat Island. Each hospital developed its own recreational programs.

During the 1960s, the position of Recreation Nurse was created (Director of State Psychiatric Services, 1968, p. 13). Recreational Nurses were appointed at Stockton in 1966 and at Peat and Milson Islands in the mid-1960s.

The teenage cohort now had an array of activities to keep them engaged, either on site or off site in the community.

Peat and Milson Islands

By the late 1950s patients at Peat and Milson Islands had more options than ever for entertainment and sport. In addition to daily radio and television broadcasts and weekly “sporting activities and cinema shows” (Director of State Psychiatric Services, 1962, p. 15), “[s]ome of the boys have wireless and some play their own records” (Peat and Milson Islands Waratah Magazine, 1958). Bourke Gibbons kept a small radio, a Noddy book by Enid Blyton and several comics in his bedside cabinet (Wood, 2007, p. 57).

By the late 1950s two tennis courts and a swimming pool had been built on the mainland and another swimming pool on Peat Island: “as many as 60 boys have enjoyed an hour’s swim in one day” (Peat and Milson Islands Waratah Magazine, 1958). Sporting events included cricket, soccer and softball games with the “workers”.

The annual social activities included Guy Fawkes bonfire night, dances in the large hall on Milson Island, a well-known fete, and end of year Christmas festivities. The Recreation Officer organised dances with help from the auxiliaries and other staff.

In relation to recreational activities out in the community, there were regular “outings by motor bus and ferry” (Director of State Psychiatric Services, 1962) and picnics. A bus donated to Peat and Milson Islands by the auxiliaries was used to take patients to a nearby park. There were also annual pilgrimages such as the bus trip to the Royal Easter Show (Peat and Milson Islands Waratah Magazine, 1960). There was a ferry too, the Milson, that was predominantly used to transfer patients, produce and staff between the Islands. It was also used for excursions

143 in the Brooklyn area. One boy, who would have been of a similar age to the cohort, wrote of a school picnic:

We went on the Milson on Tuesday 17th November. All the Peat Island schoolboys and the children from the Brooklyn Orphanage went. Mr. Stanley was the boat driver. We went down the river. … I saw one hundred boats. Then we got to Bobbin Head. The boys stayed in their seats and the girls got off the boat. Then we all had drinks and sandwiches and got paid. We went to the shops. Afterwards, all the boys who could swim were given costumes and they went for a swim. The rest went to swings and see- saws and things. When it was time, we went back to the Milson and turned back. … We were very happy but some boys were too tired to sit up for TV. It was a good picnic (Peat and Milson Islands Waratah Magazine, 1958, no page number available).

Stockton

Recreational therapy at Stockton appears to have taken the form of sports, social activities such as community outings, and skills development. Hospital resources were increasingly devoted to expanding the recreation activities program throughout the 1960s.

In 1963 three Activity Officers were appointed at Stockton. They were reported to be:

providing a comprehensive recreational and activity programme … Many patients not previously considered tractable are included in the programme and are deriving great benefit (Director of State Psychiatric Services, 1964, p. 23)

By 1963 the administrators at Stockton saw the need to link recreation activities with other hospital program: “The activity program that was introduced requires considerable expansion into the field of special education, rehabilitation and sheltered workshop activity” (Director of State Psychiatric Services, 1964, p. 23). The Recreation Activities program continued to expand at Stockton with the appointment of three additional staff in 1965, bringing the total to six:

During the year over 100 patients attended the Activities Centre each day. Activities included art, sewing, dancing, knitting, cane, raffia work, simple ball games, clay modelling and cooking” (Director of State Psychiatric Services, 1966, p. 18).

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The appointment of an additional Recreational Nurse in 1966 ensured that an increase in recreational activities was embedded in the hospital’s operation (Director of State Psychiatric Services, 1968, p. 55).

Weekly, monthly and annual activities were available on the grounds of Stockton. The 1963 Annual Report recorded that:

Television is installed in all the wards and picture shows, concerts, dances, picnics and bus outings are regular features of the patients’ entertainment whilst games such as tennis, softball, basketball and hockey are played (Director of State Psychiatric Services, 1963, p. 20).

“Activities nights” were introduced in the mid-1960s so that patients who worked in the Industrial Therapy Unit during the day could also participate in the recreation program. Monthly dances and weekly film screenings were held throughout the 1960s (Director of State Psychiatric Services, 1968, p. 55).

The recreational program also afforded patients the opportunity to interact with the surrounding community via bus excursions. In 1962 the purchase of a mini-bus for hospital use by the Stockton Hospital Welfare Association (SHWA) was noted to have “helped to activate patients who now go for picnics and to swimming classes” (Director of State Psychiatric Services, 1963, p. 23). It was also used for “visits to concerts, wrestling and film in Newcastle” and to “nearby beaches, bays and picnic spots” (Director of State Psychiatric Services, 1968, p. 55).

By the early 1960s local community initiatives had begun to welcome patients’ involvement. For example, in 1961 “the Newcastle Amateur Dramatic Society on several occasions entertained over one hundred patients at their musical presentations at Newcastle Theatre” (Director of State Psychiatric Services, 1962, p. 14). By 1967, a small group of patients were engaged in regular drama classes and performed a production of Robin Hood.

These developments reflect a clear philosophical shift in thinking about patients’ potential, including the possibility that some could be de-insitutionalised. The Annual Report (1968) about Stockton noted:

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More patients are encouraged to leave the hospital unaccompanied in groups of 2 or 3 to do their own shopping. Staff members continue to take patients to their homes and on outings (Director of State Psychiatric Services, 1968, p. 55).

6.5.3.2 Industrial therapy

Industrial therapy was progressively replaced occupational therapy in NSW mental hospitals in the 1960s to “augment … the previous craft activities of the occupational centres at the hospitals” (Director of State Psychiatric Services, 1964, p. 9). For the cohort teenagers, industrial therapy was a stimulating new activity and a likely post-school option. The aim of industrial therapy was to engage in-patients proactively and develop their skills. “The therapeutic value of assembly work is well recognised for patients who are preparing to return to the normal employment in the community” (Director of State Psychiatric Services, 1964, p. 9). Indeed, some were paid for “assembly work” carried out under small contracts from various enterprises (p. 12).

The Annual Reports for 1965-1967 describe four sets of activities in Stockton’s Industrial Therapy Units at this time.72 There was a pre-training area in which “a group of 20 low grade and previously unoccupied patients were taught elementary skills essential for subsequent workshop activity” (Director of State Psychiatric Services, 1967, p. 50). Another section performed contract work for local companies; in 1966, 25 patients in this workshop worked a regular seven-hour day on such contracts. Another small group of patients participated in a training program in the hospital laundry to develop ironing skills. Finally, ‘domestic training’ was introduced into several wards. The net effect of industrial therapy programs for patients was positive: “This continued activity has resulted in a marked decrease in epileptic seizures, incontinence and behaviour disorders, etc.” (Director of State Psychiatric Services, 1967, p. 50).

In 1963, at the initiative of management, a new occupational therapy building was erected on Peat Island (Director of State Psychiatric Services, 1964, p. 22). This Industrial Therapy Unit had started from scratch with no basic equipment and at no cost to the Department (Director of State Psychiatric Services, 1967, p. 46). In 1965-1966 four industrial therapy training officers were appointed to head up the Unit.

72 Before this, elements of the activity programs encompassed skills-based initiatives similar to what the Industrial Therapy Unit would cover.

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Once staff realised the “remarkable results” that industrial therapy afforded patients they set about implementing its programs on both Islands with a sense of urgency: “there was a desperate need to do as much as possible for as many patients as possible in as short a time as possible” (Director of State Psychiatric Services, 1967, p. 47). This included the establishment of an additional Industrial Therapy unit in the total care ward: “This Unit demonstrated very ably that the multi-handicapped can also respond to a programme of activities” (p. 47).

In 1966, industrial therapy training was also given to a “pre-school training group” in a rebuilt classroom on Peat Island (Director of State Psychiatric Services, 1967, p. 46). Then two officers established a pre-training unit on Milson Island. This reflected the philosophical shift in the hospital’s attitude to inpatient care and a better understanding of patient potential.

This unit has demonstrated that patients can be recreated from their custodial situation. The patients have responded exceedingly well… the patients improved considerably in social competence and it can be said that they enjoy going out of the wards and to work (p. 46).

6.5.3.3 Psychological assessment

Clinical psychologists were first appointed to NSW government mental hospitals in the early 1950s (interviewee Macbeth 2018). Their main role in the mid-1960s was to administer neuro-psychological assessments. Men who were diagnosed as having “mild” or “borderline” “mental retardation” at Peat Island could then be transferred to the Psychiatric Centre at North Ryde with a view to them rejoining the community (Macbeth 2018). However, this was not the case for cohort members Gowlland, Paul, and McLachlan, who were not earmarked to live in the community.

A clinical psychologist was first appointed to Stockton in 1965 (Director of State Psychiatric Services, 1967, p. 50) and the following year set about reassessing and classifying all patients. This would have been a huge task, considering there were 1,155 inpatients at Stockton in 1966. The psychologist initially tested the “higher functioning” patients, which “resulted in the classification of more than 64 patients in the mildly retarded group” (p. 55). These patients could work at the industrial workshop at Stockton. A Welfare Officer trained them in community-oriented activities such as shopping or catching the bus. It was clear that the

147 administration at Stockton hoped these residents would be part of the hospital’s first wave of de- institutionalised inpatients.

6.5.3.4 Education

NSW Department of Education Hospital Schools were first established at Peat Island around 1948 and at Stockton in 1950 (Ellmoos, 2010a, p. 70). From the late 1950s and into the 1960s there was a steady increase in school resourcing, with the appointment of additional teachers. Archive records for this period indicate that children under 16 who were assessed as having borderline or mild intellectual disability had the opportunity to attend the schools. However, only a relatively small number of patients attended school at Stockton and Peat and Milson Islands.

Part of the policy impetus behind the upscaling in school and training options in the 1960s was the belief that some of these children might one day live in the community (Waratah Magazine, 1958). In 1957 the Peat Island School had two teachers and 35 school age students with an average mental age of six and IQ of 45 (Mitchell, 2018, p. 109). In 1967 there were three teachers (Director of State Psychiatric Services, 1967, p. 47). Milson Island, which tended to accommodate older males and ‘ambulant’ boys, did not have a school.

The Inspector-General of Mental Hospitals noted in his Annual Report (1957):

To help overcome their handicaps the boys at the school are presented with as many community situations as possible. They are grouped together as often as possible for such activities as music (percussion band, singing and appreciation of music), physical education (to develop muscular co-ordination), film viewing and manual arts. It is hoped as a result of these activities that some of the boys will have a gradual adjustment of their social attitudes and will eventually be fit to take their place in the outside world (p. 15).

Stockton Mental Hospital School taught female students aged 6-22 years. The official government historian wrote of this era at Stockton during the 1950s:

Education in an institutional setting played an important role in both socializing the patients and preparing them for work. Education was not available to everyone at the Hospital (Ellmoos, 2010a, p. 70).

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The aim in the early 1960s was that girls who “graduated” from school might then move into the hospital’s “sewing room”. During these years, analysis of the Annual Reports found no reports of school education being seen as a means of facilitating eventual departure for a life in the community.

6.5.3.5 Work

According to the Annual Reports and Waratah Magazine, the “boys” at Peat and Milson Islands were involved in infrastructure construction on the Islands and surrounding farmland. Patients were paid for some of this work. For example, the President of the Hospital’s Ladies Auxiliary noted that “the sum of 1,000 pounds has been paid to those boys and some staff who voluntarily worked each Saturday” on building the Chapel on Peat Island (Peat and Milson Islands Waratah Magazine, 1960).

The Department of Health psychologist recalled that some of the able-bodied men did paid work for local farmers on the Hawkesbury River around 1965-1967: “The fellows did things like cleaning of the oyster frames for the local oyster farmers” (Macbeth, 2019).

The situation for patient workers was different at Stockton, where the females worked at the nursery and with ambulant children. The 1965/1966 Annual Report recorded the commencement of “a new phase” for these workers:

After extensive renovations, Ward 2 was re-opened during the year to provide separate accommodation for patients working within the service areas. … Patients working in such areas as the hospital sewing room or laundry were no longer expected to perform additional ward duties such as assisting in the feeding and clothing of helpless patients (Director of State Psychiatric Services, 1966, p. 18).

Nurse Camp recalled that they were “fairly high functioning” adult patients who had likely come to NSW mental hospitals as children and grown up there:

The workers. They were girls who probably would not have gone to Stockton if it was a later era. They had their own room. They were mothers to those girls.

The nursery where Nurse Camp worked for three years had approximately 100 patients. It was divided into the ambulant side and the infant side. Seven nursing staff were typically on

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duty during the day and assistance from the patient workers was essential: “We needed those girls who helped us”. Nurse Camp recalled one of her “favourite” workers:

“Dolcie” would mop the floors during the day. Dolcie had responsibilities during the day. She had her girl in the wheelchair and she would take care of her during the day.

She noted that the male “workers” were an integral part of the grounds and maintenance team:

The men were fairly high functioning. They used to do the rounds; they would do the deliveries throughout the day.

The workers had additional privileges and were held in high regard. The female workers were taken on outings to the staff’s homes, as an expression of friendship and thanks: “We would often take the worker girls home” while the “boys would go to the footie”.

The workers at Stockton were paid, although the amount does not seem to have been on par with that of the ward maids from the local community who performed similar work. Nurse Camp recalled: “They [workers] were given an allowance. They would go and buy sweets from the canteen.”

It is highly likely that the three girls in the cohort received emotional and practical care from the female workers when they were first transferred. It is also possible that by the early 1960s, when the girls were themselves in their mid to late teens, some of the ‘higher functioning’ cohort members might have become workers.

6.6 The Local Auxiliary Movement Enhances Quality of Life

The outside community improved the quality of life of inpatients, primarily through the auxiliary73 program. The Director of State Psychiatric Services noted in his 1961/1962 Annual Report the important contribution of the auxiliaries at NSW’s mental hospitals:

It is desired to express the gratitude of the Division for the work that was done by many extra Departmental bodies during the year … tribute is paid to the work of the undermentioned: the After Care Association … The Psychiatric Rehabilitation Association … The Mental Health Association … The Parent and Citizens Association formed in connection with the Schools for Mental Defective Children in certain Hospitals

73 In the context of this chapter auxiliary refers to a volunteer group whose purpose is to support the mental hospital staff and/or patients.

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… the various auxiliaries attached to the hospitals who raise funds for the purchase of additional comforts and amenities for the patients … the Country Women’s Association whose members assist at the Canteens and who adopt patients in the Hospitals for Mental Defectives (Director of State Psychiatric Services, 1962, p. 8).

The local volunteer auxiliaries attached to both Peat and Milson Islands and Stockton were established in the 1950s. These auxiliaries consolidated and strengthened their role throughout the 1950s and reached the peak of their fundraising power in the late 1960s. Indeed, the auxiliaries were described as “visionaries” (Peat and Milson Islands Waratah Magazine, 1960).

The respective auxiliaries purchased resources, such as buses, to enable residents to enjoy extra-mural activities. Auxiliaries also funded the construction of important community facilities —canteens and swimming pools at both hospitals, and a non-denominational Christian chapel at Peat and Milson Islands. From 1959, the auxiliaries at Peat and Milson Islands contributed annual amounts of ‘pocket money’ to ensure that participation in excursions and the ability to make canteen purchases was equitable.

In addition to fundraising, auxiliary members also worked in a voluntary capacity to support the hospital administration, for instance, in running the canteens and organising the annual fetes, balls and regular dances for the patients. These social activities would have helped to enrich the teenagers’ quality of life.

Many of the new program offerings were facilitated by support from voluntary organisations. These organisations played a vital role in filling the policy/program and budgetary gaps that government mental hospitals did not provide. As the Inspector-General of Mental Hospitals noted in the Annual Report (1957):

It is in this general scene of hospital community life that the three voluntary organisations associated with hospital have done so much. These three bodies – the Ladies Auxiliary, the Parents & Citizens’ Association, and the Staff and Patients Welfare Association are three separate organisations all working to a common end – the welfare of the patients (p. 16)

The Country Women’s Association (CWA) also made an important contribution in the 1950s. Nurse Schultz, who worked at Peat Island from 1967-1990, recalled:

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Then in the mid-1950s, the CWA and the Women’s Auxiliary ‒ there were three organisations74 that started for the benefit of the patients. And they raised a lot of money. That’s when the fete days started. They raised fetes and they had dances and they had fairs down [on] the flat or in the dining room to try and get the public in. They really worked hard these men and women. (Andersen, 2009, p. 19)

The Parents and Citizens (P & C) Association was affiliated with the children who attended the Peat Island Hospital School. It began around 1950, when the school was established, and supported other patients as well as the students. For example, in 1957 the P&C purchased two TV sets for some wards (Peat and Milson Islands Waratah Magazine, 1957).

One of the P&C’s biggest fundraising achievements in the 1960s was the joint purchase (with three other auxiliaries) of land and the subsequent construction of a holiday property for patients’ use—Rathmines Retreat at Lake Macquarie on the NSW mid north coast. The Department of Public Health then undertook to assist “by meeting the costs of alterations, equipping and general maintenance” (Director of State Psychiatric Services, 1964, p. 22). This was an example of ‘co-contribution’, or what would today be called a social policy partnership initiative. Rathmines opened in 1967, with visits from small groups of the Islands’ patients (Andersen, 2009). It remained in use as a holiday retreat until the 1980s (Forbes, 2018).

The Peat & Milson Islands Staff and Patients’ Welfare Association (Association) was also established around 1950 to raise funds for “normal activities to provide equipment etc; necessary for the extension of amenities to patients and staff at this hospital” (Peat and Milson Island Waratah Magazine, 1953). The Association funded sports days, sporting equipment and uniforms for the cricket and soccer team and hosted dances. The Association was also recorded as making a contribution to the “patient’s [sic] donations fund”.

The Peat and Milson Islands Ladies Auxiliary (Ladies Auxiliary), formed in 1951, noted that its “objects are solely for our lads” (Peat and Milson Island Waratah Magazine, 1953). The Auxiliary was staffed by the wives of the officers, staff, local community and friends of the hospital. Nurse Norman Dyer, who worked at Peat and Milson Islands from 1961-1983, commented: “Like a P&C Association, the Ladies Auxiliary worked their backsides off to provide amenities for the kids which was quite good” (cited in Andersen, 2010).

74 The third organisation Schultz refers to is the Parents and Citizens Association attached to the Peat Island Hospital School (Andersen, 2009, p. 25). 152

The main fundraising activity of the Ladies Auxiliary was the annual fete. The first fete was held in 1953 and these continued until 2000 (Andersen, 2009). They were the main source of fundraising from the 1950s to the late 1960s. They also made a significant contribution to community morale. Nurse Dyer recalled fetes as “big fun days” (cited in Andersen, 2009) that brought together the stakeholders in the teenagers’ lives: friends, family, staff, and local community. The Auxiliary also helped fund dances, a ball and Christmas festivities, including a Christmas float and presents for all the patients and assisted with the costs of printing the Waratah Magazine (Andersen, 2009).

Many initiatives were joint activities between the auxiliaries. In 1957 the Ladies Auxiliary and the P&C funded the replacement of the temporary canteen that had been set up in 1953. The Manager of Peat and Milson Islands expressed his gratitude:

Now we have a full time service Canteen of a permanent nature, for not only service to the Boys, but to those many staff who are happy to avail themselves of the service. Thanks again Ladies and thank you P&C Association (Peat and Milson Islands Waratah Magazine, 1957). The permanent canteen meant a lot to “the boys” because they could “purchase their small comforts … giving them all a considerable pleasure” (Peat and Milson Island Waratah Magazine, 1957).75

The bus was the Auxiliary’s first major purchase. It was prioritised “to enable Patients, more especially the cripples and those otherwise not able to leave the Hospital, to be taken for outings, picnics etc.” (Peat and Milson Island Waratah Magazine, 1953).

In 1959, the Ladies Auxiliary raised funds to provide every patient who lacked family involvement in their lives with 10 pounds annually (Peat and Milson Islands Waratah Magazine, 1960). This was an important supplement to the meagre child endowment or institutional pension for adults. The Ladies Auxiliary also made sure that every patient had a present on Christmas Day (Andersen, 2009), a practice that continued until the late 1970s.

The construction of the non-denominational Christian chapel by the Auxiliary in 1961 was intended to “normalise” patients’ lives by including them in the regular activities of the

75 The 250 plus Milson Island residents could not use the permanent canteen regularly because they were on another island. 153

wider community (Schultz as cited in Andersen, 2009, p. 20). Attendance at religious institutions in Australia peaked in the 1950s, with 40% of the population attending a Christian church once a month (National Church Life Survey Research, 2010). The non-denominational chapel on the perimeter of the Peat Island grounds was a gesture of social inclusion that aimed to “provide the total needs of a person of the residents” (Peat and Milson Islands Waratah Magazine, 1960; see also Andersen 2009). In 1960 the Ladies Auxiliary contributed 427 pounds ten shillings and sixpence for Christmas presents and donations for the patients (Peat and Milson Islands Waratah Magazine, 1960).

Stockton had one main auxiliary and was associated with a number of local volunteer and charity organisations. The Stockton Hospital Welfare Association (SHWA) was formed in 1956, with membership “largely drawn from parents of the patients at Stockton, as well as Hospital staff” (Ellmoos, 2010a, p. 72). By the early 1960s the SHWA was said to be “an active organisation which works in the interest of patients and staff” (Director of State Psychiatric Services, 1962, p. 14). The efforts and contribution of the SHWA were consistently recorded in the Annual Reports from 1960-1966. Following the example of Peat Island, in 1960 the SHWA established a canteen for their hospital that provided a focal point for the patients, staff and families to meet outside the wards. In 1963 the SHWA purchased a 22 seat mini-bus.

In 1966 the first public Open Day was held at Stockton, coinciding with the official opening of the two SHWA-funded swimming pools. It was declared a success: “The response from patients and well-wishers far exceeded expectations” (Director of State Psychiatric Services, 1967, p. 51). The Open Day was yet another manifestation of the philosophical shift from an internal focus on the hospital to a more outward orientation in which patients were encouraged to interact with the local community.

Grateful appreciation must be accorded the unceasing beneficence of the Stockton Hospital Welfare Association. As well as providing the much appreciated canteen facility, bus trips, picnics, Christmas parties and gifts etc their more notable contributions during the past year include … playground equipment including a full-size trampoline. The Association has also provided electric fans for each ward and for the winter months, a large quantity of woollen rugs (p. 51).

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By the mid-1960s, a number of other non-government volunteer and fundraiser groups were involved with patients at Stockton, including “local church bodies [which] have been most generous in extending invitations for patients to attend their various fetes” (p. 51).

In summary, the efforts of the SHWA from 1956 to the 1960s were primarily directed towards fundraising for patient amenities, promoting family engagement via special days at the hospital, family support, particularly for parents of newly admitted patients, and enjoyable community engagement for patients. The various auxiliaries made a substantial contribution to enhancing the teenage cohort’s quality of life during the 1950s and 1960s, especially at Peat Island.

6.7 Conclusion

The move from Watt Street to crowded hospitals, dominated by adults, must have been hard for the cohort to adjust to. However, they were soon exposed to a wider range of experiences, with new industrial therapy initiatives, schooling for some, ‘work’ at the hospital and more varied recreational activities. However, it is possible that the benefits of the program initiatives might have been negated by the ongoing overcrowding.

Arguably, the main contributions to patients’ quality of life came from the activities of the auxiliaries, which provided in-kind and financial support to the hospital and the patients. Their members volunteered, organised events, bought play equipment and buses, funded canteens and swimming pools, and met a range of other expenses for those living in the two hospitals.

The next chapter details the cohort’s early adulthood and adult years and the impact that key Commonwealth and NSW administrative instruments had on their lives during these years.

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Chapter 7: Adulthood and Work (1967 – 1989)

Two key administrative changes positively impacted the cohort’s adult lives. These were the introduction of the Commonwealth’s Sheltered Employment Allowance (SEA) and the establishment of sheltered workshops at the hospitals where they lived. These changes meant that eligible persons could engage in a form of paid work, similar to other people their age, and experience a more individualised life in state care.

At a State level, the administrative focus was on implementing the required Commonwealth changes. As well, during the 1980s, a number of negative NSW reports questioned the quality of care in and, indeed, the very existence of NSW mental hospitals.

The period covered by this chapter encompasses the bulk of the cohort’s adult and working years. It begins in 1967, when the Commonwealth ‘pension’ (as interviewees referred to it) was extended to eligible persons 16 years and older who were ‘mentally handicapped’ and living in NSW mental hospitals (Director of State Psychiatric Services, 1969, pp. 5-6). Its official name was the Sheltered Employment Allowance (SEA). It was a social security benefit for persons with disability engaged in some form of employment and was an offshoot of the Invalid Pension. Eligible members of the cohort received a much higher amount under the SEA than was the case with the Institutional Pension.76

The chapter concludes in 1989, when administrative responsibility for persons with intellectual disability living in State care in NSW was transferred from NSW Health to the NSW Department of Family and Community Services (NSW Department of Health, 1989). This change reflected a significant cultural shift. Both symbolically and practically, it signalled the replacement of the medical model of disability by a social model of community-based care, which continues to this day.

76 People living in mental hospitals were not eligible to receive the Invalid Pension until 1980.

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The chapter begins with an account of what we know of the cohort and the conditions at Stockton and Peat Island during this period.77

7.1 Status of the Cohort

Eight of the 13 members of the cohort (three females and five males) who were alive during their teenage years may have survived into adulthood. The average age of the cohort would have been 20 years in mid-1967 if all eight were still alive.

It can be assumed that the three women lived at Stockton from the mid-1950s to at least the late 1960s.78 Peat Island admitted women on a permanent basis from 1978 onwards (Ellmoos, 2010b, p. 70), but it is unknown exactly where the women in the cohort were living during their late adulthood.

I assume that the five males in the cohort of eight spent their early adult years at Peat or Milson Island. We know that Ricky Gowlland and Richard McLachlan lived at Peat Island throughout their adulthood until its closure in 2010, and that Paul, who had lived at Milson Island in his teenage and early adulthood years, was transferred to Callan Park Mental Hospital following the closure of Milson Island.

Of the eight members of the original cohort of 13 who are assumed to have survived into their adult years, we only know the identity of three who were alive in the late 1970s: Ricky Gowlland, Paul, and Richard McLachlan. We know from the Department of Family and Community Services that Gowlland, McLachlan, and two others in the cohort were alive in 1989, and living in accommodation provided by the Department of Family and Community Services in 1989 (Andrews, 2018). However we do not know the identities of these other two or whether Paul was one of them.

77 The language employed in this chapter reflects the administrative terminology of the era. For example, the term ‘intellectually handicapped’ was used in the Annual Reports of the NSW Director of State Psychiatric Services in 1968 and 1969 in relation to the extension of the invalid pension. Some five years later, the terms ‘mental retardation’ and ‘developmental disability’ were used in the NSW Inquiry into Health Services for the Psychiatrically Ill and Developmentally Disabled (Richmond, 1983). By contrast, in the Commonwealth’s Disability Services Act 1986, the term used was ‘person with an intellectual disability’. 78 Admission and program focus shifted to ‘intensive training’ for the ‘young mentally retarded’ from 1967 onwards (Director of State Psychiatric Services, 1969, p. 37).

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7.2 Legislative and Administrative Framework

In Australia, the late 1960s and early 1970s were characterised by a vision of an “open society” and a focus on individual human rights for persons with disabilities (Willer & Intagliata, 1982, as cited in Chenoweth, 2000, p. 82). At a Commonwealth level, legislation moved in the direction of “rights based legalism” (McSherry & Weller, 2010), particularly in the 1980s under the growing influence of international human rights agreements.

This vision of inclusion was embedded in legislation and policy at a Federal level, in the first instance via social security policy. The Commonwealth, in an effort to hasten the dismantling of the Dickensian mental hospitals, attached conditions to social security payments like the invalid pension and sheltered workshop allowance requiring the creation of less institutional living environments that more closely reflected what was found in the community. Another new focus was the expectation of formal engagement in work or work therapy.

This section summarises the key policy changes at international, national and State level that impacted on the lives of the cohort during their adult years.

7.3 International Human Rights Instruments

The key human rights instrument of relevance to the cohort in the post-World War II era was the Universal Declaration of Human Rights 1948 (the Declaration), which affirmed the inherent dignity and the equal and inalienable rights of all people and established a set of standards for the protection of these rights via the rule of law. Although the Declaration was a powerful international instrument and the source of all subsequent United Nations (UN) treaties, it did not specifically address the needs of people with disabilities. Between 1948 and 1971, during the cohort’s childhood and teenage years, there were no international agreements specific to people with disabilities. Broad human rights principles enunciated in the Declaration applied to all citizens (including people with intellectual disability) during this time. It was not until the 1970s that the rights of people with intellectual disability were addressed for the first time in two separate dedicated international human rights instruments.

The first, the United Nations Declaration on the Rights of Mentally Retarded Persons 1971 (1971 Declaration), was specific to persons with intellectual disability. It called for “national and international action to ensure that it [the Declaration] will be used as a common

158 basis and frame of reference for the protection of rights” of mentally retarded persons. The 1971 Declaration was a short statement, just over a page, essentially identifying the values and practical steps that signatory states were encouraged to adopt. It sought to ensure that “[t]he mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings” (United Nations Human Rights Office of The High Commissioner, 1971). All of its seven principles were relevant to the lives of the cohort in the 1970s. Of particular importance to their adult lives was the emphasis on work and training:

The mentally retarded person has a right to economic security and to a decent standard of living. He has a right to perform productive work or to engage in any other meaningful occupation to the fullest possible extent of his capabilities (Principle 3).

The second instrument was the United Nations Declaration on the Rights of Disabled Persons 1975 (1975 Declaration). This was broader in scope and addressed all persons with disabilities. It emphasised human dignity and the right of people with a disability to lead a decent life as close as possible to that of mainstream society. According to Chenoweth (2000) the 1975 Declaration brought the formal rights of people with disabilities to international prominence and was associated with the push for de-institutionalisation and the “social integration and reintegration” of people with disabilities (p. 82).

The Australian Government was an early signatory to both instruments (Fitzroy Legal Service, 2017). There were other international instruments, including more binding Conventions,79 to which Australia became signatory during the 1970s-1980s, but none were specific to persons with intellectual disability. It was not until the 2000s that the international community agreed on a dedicated Convention on disability.

In the 1980s the UN began to make progress towards a more meaningful principle of disability inclusion.

Numerous efforts, both substantive and promotional, were taken nationally and internationally to improve the situation of persons with disabilities with the goal of increased integration in society and improvements in physical and psychological adjustment of persons with disabilities within their communities. Programs were

79 Conventions are stronger than Declarations because they are legally binding for signatory governments and impose positive obligations on member states (University of Minnesota Human Rights Resource Center, 1999).

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launched focusing on rehabilitation and disability prevention (United Nations Department of Economic and Social Affairs, 2014).

UN initiatives during the 1980s focused on ‘rehabilitation and disability’, while the Australian Government’s disability policies during this period emphasised supported employment and training rather than ‘rehabilitation’, although this language was used in NSW Department of Health annual reports in relation to the cohort and ‘work’.

According to Ellmoos (2010a):

The International Year of Disabled Persons in 1981 paved the way for the growth of a disability rights movement in Australia at both Commonwealth and State levels. This, combined with the Richmond Report in 1983, would have a dramatic impact on the life of the residents at Peat Island in the final decades of the 20th C (p 72; see also Ellmoos, 2010b, p 98).

At interview, senior NSW public servant David Richmond noted the positive impact of the International Year on forcing NSW public service providers to improve access:

I worked in Public Works during the International Year of Disability. All the line agencies had issues … physical disability access was the focus.

Despite the focus on physical disability, Jeanette Moss, a parent advocate for persons with intellectual disability, commented in her interview that the “1981 International Year of the Disabled Persons and the Anti-Discrimination Act 1977 (NSW) all helped”.

In 1983, the UN declared a Decade of Disabled Persons, 1983-1992. The UN General Assembly encouraged member states to use the decade to implement a World Programme of Action. This included generating new financial resources, improving education and employment opportunities for persons with disabilities, and increasing community participation at a country level (United Nations Department of Economic and Social Affairs, 2019).

7.3.1 Implications for the cohort

What impact (if any) did Australia’s commitment to these international human rights instruments have on the cohort? This section addresses the question from two perspectives: its impact on Australian law and practice in the years following ratification, and the direct impact, if any, on the cohort itself.

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According to Chenoweth (2000) and her appraisal of Lewis (1988), Australia’s signing of both the 1971 Declaration and the 1975 Declaration was reflected in Commonwealth legislation at the time; specifically, “the Australian Handicapped Persons Assistance Act 1974 (Cth) (HPAA) was recognition of that intent” (Chenoweth, 2000, p. 82). However, the HPAA, the only major Commonwealth disability statute introduced in the 1970s, had no direct impact on the cohort as it focused on assisting people with a disability to live at home with assistance, whereas members of the cohort were living in mental hospitals. It is clear from the HPAA that the Commonwealth’s response to disability policy at this time focused on employment and training, in line with the principles set out in the two UN Declarations.

However, international and disability-specific instruments did have a direct influence on subsequent Commonwealth legislation in the 1980s, particularly the Disability Services Act 1986 (Cth) (Llewellyn, 2016, p. 190). The implementation of this statute and its requirements for change at State level positively impacted the cohort from the 1990s onwards.

In relation to whether Australia’s commitment to the various human rights instruments had any flow-on effect on the cohort, I put this question to interviewees, since only a small number of them spontaneously made reference to the impact of human rights instruments on their practice. Both the NSW Health psychologists (Macbeth and Bourke) who worked with the cohort during this time did mention the relevance of human right values in their work, arguably because they had been exposed to the academic literature during their university study and ongoing training.

Nurse Grahame Davis, who started working at Stockton in 1976, observed that his nursing practices throughout the 1970s and 1980s had been influenced by the normalisation approach to disability and human rights frameworks:

Human rights. It does trickle down to service delivery. That’s why de- institutionalisation occurred.

Davis understood ‘normalisation’ as part of his efforts to deinstitutionalise people into the community.

Interviewee Joy Woodhouse, who held executive positions within Developmental Disability Services in NSW Health and NSW Department of Community Services between 1987 and 1997, summarised the impact of international instruments at an administrative and

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operational level: “They were useful from a briefing perspective … [but they] really had limited impact on life”.

In summary, it is clear that Australia’s signing of these human rights instruments influenced Australia’s administrative reforms in the disability sector, particularly at Commonwealth level, from the mid-1980s onwards. However, it would take many years for human rights values to impact the NSW government’s administrative frameworks and, in turn, nursing practices at the hospitals where the cohort lived. These impacts are discussed in detail in Chapter 8.

7.3.2 Commonwealth social security provisions

The Commonwealth extended its invalid pension to ‘intellectually handicapped’ persons in NSW government mental hospitals in 1967 (Cummins, 2003, p. 126; Director of State Psychiatric Services, 1969, 1970; Ellmoos, 2010a, p. 82; Mitchell, 2018). The 1967/1968 Annual Report noted:

As a consequence of an amendment to the Commonwealth Social Services Act it became possible for certain categories of patients in departmental hospitals to be granted invalid pensions. Following consultation with the Commonwealth Department of Social Services, the Commonwealth now grants pensions to intellectually handicapped patients over the age of 16 years provided they are being trained towards rehabilitation and are accommodated in ward units separate from non-pensionable patients (Director of State Psychiatric Services, 1969, p. 5)

7.3.3 Implications for the cohort

In the financial year 1967/1968, 234 patients at Peat and Milson Islands were reported to have been granted “invalid pensions” (Director of State Psychiatric Services, 1969, p. 47). The following year, 130 residents at Stockton qualified for the “pension” (Director of State Psychiatric Services, 1969, p. 37). This claim is misleading, since 1967 saw the introduction of the sheltered employment allowance (SEA) under the Social Services Act 1947-1967 (Cth), which also dealt with the invalid pension proper. The actual position was that the invalid pension as such did not become payable to someone living in a government mental hospital until 1980 (Australian Government Department of Families Community Services and Indigenous

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Affairs, 1983, p. 38; Parliament of Australia, 2011).80 Prior to that date, the invalid pension could only be paid if the residence was no longer classified as a ‘mental hospital’. Specifically, the 1967 sheltered employment allowance (SEA):

… was payable to a disabled person engaged in sheltered employment at an approved workshop if he were qualified to receive an invalid pension or would be likely to become qualified if not engaged in sheltered employment (Australian Government Department of Families Community Services and Indigenous Affairs, 1983, p. 28).

As correctly explained in some Annual Reports (Director of State Psychiatric Services, 1969, 1970), SEA ‘pension’ eligibility was restricted to mental hospital patients over 16 years, who met the other qualifications for the invalid pension, were living in “hostel accommodation”, and were in training and/or “work” at sheltered workshops. There was the added requirement that the recipient receive exposure to the surrounding community.

Irrespective of the exact source of social security funding, these changes had a positive impact on the cohort. The 1967 changes provided a real incentive for government institutions to improve the living conditions for some residents, namely, those in the hostel-style wards for persons on ‘pensions’. Many patients continued to be covered by far less generous income provisions—the pre-existing institutional pension and its ‘maintenance allowance’ as per the Mental Institution Benefits Act 1948 (Cth),81 supplemented in some cases by contributions of ‘spending money’ from family and/or auxiliaries. The institutional pension remained unchanged apart from adjustments for inflation and small incremental increases (Australian Government Department of Families Community Services and Indigenous Affairs, 1983, pp. 123-124).

The Commonwealth’s requirements for accommodation upgrading and other criteria82 meant that, after the initial surge, the roll-out of these social security reforms at Stockton and

80 Although Ellmoos (2010b) refers to changes in ‘regulations’ (p. 68), there were no regulatory changes to the Social Services Act 1947-1966 as amended regarding the invalid pension (Social Services No. 10 of 1967). I was unable to locate any formal intergovernmental agreements about the matter outside of the NSW Department of Health Annual Reports. 81 Occasional Paper No. 12: A compendium of legislative changes in social security 1908-1982 (2006) has been updated once since its original publication in 1983. The Occasional Paper is very thorough and includes a chronology of all administrative changes relevant to Australian Commonwealth social security payments. The compilation is made Act by Act, so I have preferred it as the authoritative source. 82 Section 133D of the Social Services Act 1947-1967 (Cth) states: “Where the Director-General is satisfied that— (a) an approved organization provides paid employment for disabled persons at any premises; and (b) the persons, or a substantial number of the persons, employed at those premises are disabled persons, the Director-General

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Peat Island Hospitals was gradual (Director of State Psychiatric Services, 1969, 1970). As mentioned earlier, 130 “working patients” at Stockton Hospital living in “hostel type wards” and engaged in “work” were now receiving the “invalid pension” (Director of State Psychiatric Services, 1969, p. 37). This represented a fraction of the 1,053 residents at Stockton in 1967/1968. The roll-out was comparatively quicker at Peat and Milson Islands, with 234 of the 470 residents in 1969 (almost half the patient population) in receipt of the new Commonwealth social security payment (Director of State Psychiatric Services, 1969, p. 47). Cohort member Ricky Gowlland, who lived at Peat Island, was in receipt of the new payment by 29 February 1968.

The SEA was paid directly to the individual. The individual, or his/her guardian, would likely have made the hospital a ‘payment nominee’ to manage the money. In contrast, the institutional pension was paid directly from the Commonwealth to the States. There would have been nothing to prevent the State from allocating to patients at least ‘pin money’ (a small sum for spending on inessentials) or a more reasonable amount of ‘pocket money’ from the institutional pension, especially when the payment became more generous from 1966. There is some indication that this could have been occurring by the 1960s (Australian Government Department of Families Community Services and Indigenous Affairs, 1983, p. 123), but this had not been the practice at either hospital. From the late 1950s, auxiliaries at Peat and Milsons Islands used fundraising to provide patients (particularly those without family or other means) with personal ‘pocket money’. This practice continued until at least 1970, as the 1968/1969 Annual Report entry for Peat and Milson Islands Hospital confirms:

The pocket money for patients who do not receive other monies continues to be received from the Parents and Citizens Association (Director of State Psychiatric Services, 1970, p. 37).

From the 1970s, the Annual Reports do not contain enough information to track the pace of implementation of social security reforms. However, we know from interviews that patients at Peat Island were given weekly cash ‘pocket money’ from this period. Norman Dyer, a nurse at Peat Island between 1961 and 1983, recalled the huge cultural changes associated with the introduction of the ‘pension’ in the mid-1960s: may direct that paid employment provided at those premises by the organization is, for the purposes of this Part, sheltered employment”.

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ND … towards the middle 60s a lot of things changed. … The pensions were allocated to the lads so that instead of wearing boots and hand me down clothes out of the general store, they could buy their own clothes, personal possessions. Things really started to change.

SA Did they not get a pension before?

ND No!

SA Is that right. So when did that come in?

ND About 1964 I think. I’ve got a bit hazy memory now I’m getting old. But prior to that each ward had a general store with clothes like shirts, shoes, socks, underpants or what have you. Some of the better clients or patients whatever you want to call them would have some of their stuff in their own secret hidey hole. Cause none of them had lockers. Most of the wards were just rows of beds. There weren’t many personal possessions – they had no personal possessions really. But as I said the evolvement of the pension, kids would buy themselves transistor wirelesses, all sorts of things; you know that they never had before. Certainly was a change. (Dyer, Andersen, 2009, p. 3).

The ‘pocket money’ included amounts left over after board monies had been deducted from the social security payments received by the hospital. The 1968/1969 Annual Report explains:

The State is being put to some expense in meeting requirements of standards of staffing and accommodation in respect of the patients receiving social service benefits and two- thirds of the benefit is retained as a charge for maintenance, the patient retaining one- third (Director of State Psychiatric Services, 1970, p. 7).

Some families also sent pocket money to the hospital. These contributions were held in trust accounts. According to Goddard, who was an administrative officer at Peat Island from 1970-2001:“The system was set up quite well” (Goddard, 2018). She described the excitement of patients at the novel experience of receiving their pocket money, which was kept in the individual’s account and handed out as cash once a week:

I used to go up to Milson every Friday to pay the clients when the pension came in. I used to go up every other Thursday to pay the staff because we used to pay in cash in those days. I used to go up in the boat. … When we used to pay there used to be a

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charge nurse who used to make them all line up, all line up to get their pays and if you were out of line – you didn’t get your money (Goddard, Andersen, 2009, pp. 6-7).

The weekly allocation was considered personal money which patients could use to pay for outings or buy cigarettes, snacks and soft drinks from the Hospital’s canteen and nearby service station at Mooney Mooney. Money would be drawn for more substantive purchases such as clothing from the stores at Hornsby.

However, as previously noted, not every ‘intellectually handicapped’ person in NSW mental hospitals was eligible for the more generous new pension. At Stockton in 1971, “residents in 12 of the [21] wards were receiving pensions, including three wards for ‘geriatric patients’ who were receiving the aged pension” (Ellmoos, 2010b, p. 84).83 Once the invalid pension was extended to all patients residing in psychiatric hospitals in 1980,84 all of the remaining members of the cohort at Stockton and Peat Island should soon afterwards have been in receipt of the invalid pension or the SEA.

The introduction of the SEA reflected the Commonwealth Government’s policy focus on promoting the benefits of work and training to enrich the lives of Australians with a disability. From the late 1960s, the promotion of ‘rehabilitation’ via ‘employment’ and ‘training’ was firmly established as part of the Commonwealth’s response to disability. The SEA was payable to a disabled person engaged in sheltered employment at an approved workshop if s/he were qualified to receive an invalid pension or would be likely to become qualified if not engaged in sheltered employment. The maximum rate of the allowance was the same as for the invalid pension, but the means test allowed for a more liberal treatment of any workshop earnings (FACSIA, 2004, p. 28). Goddard recalled the token nature of the earnings from the sheltered workshop at Peat Island in the 1970s:

There was a sheltered workshop on site at Peat Island. But there were no additional individual payments for work that was done. There was a separate account there at the Sheltered workshop and any output work (eg. packaging scrubbing steel). Any money

83 I was not able to obtain NSW Department of Public Health Annual Reports for 1969/1970, 1970/1971, 1971/1972 from the State Library of NSW’s – so I was unable to verify Ellmoos’ data. 84 From November 1980 the invalid pension was payable to patients in psychiatric hospitals. https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/BN/1011/S SPayments1#_Toc286050320. In 1981, the Commonwealth repealed the Mental Institution Benefits Agreement Act (Cth). This was the end of the institutional pension.

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that was made went back into the workshop and towards a Christmas party. The Sheltered Workshop was vocational (Goddard, 2018).

Goddard’s reference to the sheltered workshop as “vocational” captures the practical reality of the Commonwealth’s policy. Although actual work was performed, the financial reward was not commensurate with payment for work as conventionally understood.

7.3.4 Disability Services Act 1986 (Cth)

The next piece of Commonwealth legislation to have a direct impact on the cohort was the Disability Services Act 1986 (the Act), which commenced on 5 June 1987. The overarching objective of the Act was to enhance the provision of services to Australians with a disability and improve their lives in the community. Under the Act, funding was provided for a range of services, some of which were previously covered under the Handicapped Persons Assistance Act 1974 (HPAA) and Part VIII of the Social Security Act 1947 as amended. Specifically, the Act identified the Commonwealth’s responsibilities in relation to accommodation support, respite care, supported employment, competitive employment, training and placement, advisory and information services, individual assessment and program planning, and Commonwealth Rehabilitation Services (Analysis & Policy Observatory, 2019; Lindsay, 1996).

During the second reading debate on the Disability Services Bill 1986, Senator Don Grimes, then Minister for Community Services, explained the aims of the legislation:

… that programs and services should provide opportunities for people with disabilities to reach goals and enjoy lifestyles which are valued by the community at large and are appropriate to their chronological age (Mr Donald Cameron MP quoting Senator Grimes in House of Representatives Hansard, 26th November 1986, p. 3730).

Fellow ALP member, Ms Jeanette McHugh MP, commended the changes regarding supported employment and the transfer of employment services from sheltered workshops into the community.85 The new approach entailed supported open market employment. Ideally, there would be a broader range of employment services from which people with intellectual disability could “choose”. This new approach, she indicated, reflected the success of de-

85 A new definition of ‘supported employment services’ is included in clause 7 of this Bill which increases the range of services that can be funded by removing the current requirement that the employment be provided at particular premises (House of Representatives Hansard, 26th November 1986, p. 3728). 167

institutionalisation over the previous ten years. These changes might have had a positive impact on those members of the cohort who were working in on-site sheltered workshops, had they translated into the provision of alternative employment opportunities or led to radical changes in existing arrangements at Stockton and Peat Island. In practice, ‘choices’ available to the cohort were limited by service providers’ decisions about the type of supported employment they offered.

The Act reflected the profound shift in the philosophy and practice of disability advocacy that took place in the 1970s and 1980s (Section 3 "Disability Services Act," 1986).

This Act, based on a human rights framework, also recognised that people with disability have the same rights as do other members of society. This marked a significant turn in the official understanding of disability in Australia (Llewellyn, 2016, pp. 8,19).

The language of human rights is extensively deployed in its statutes.86 The Act signaled the Commonwealth’s embrace of a disability human rights framework. Such legislative changes contributed to subsequent administrative changes in NSW and, eventually, to the nursing practices of some of the nurses who worked with the Cohort in years to come. This is elaborated in a later section.

In this context, the concept of “community integration” was highlighted, including integration through employment.87 It has been argued that the principles and objectives of the Act sought to “reform the injustices of a custodial institutional service” (Carpenter, 1993, cited in Chenoweth, 2000, p. 84). This in turn contributed to a new wave of de-institutionalisation in NSW88 and in Australia as a whole (Bigby & Frawley, 2009; Wiesel & Bigby, 2015).

86 For example, the “Principles” section of the Act directly addresses the inherent human rights of Australians with a disability: “People with disabilities, whatever the origin, nature, type and degree of disability, have the same basic human rights as other members of Australian society” (Act s 5). 87 For example, one of the objectives of the Act identifies the crucial role of employment opportunities for Australians with disabilities with a view to: “(ii) enable persons with disabilities to achieve positive outcomes, such as increased independence, employment opportunities and integration in the community” (Act s 3(b)(ii)). 88 There were several possible waves of de-institutionalisation of persons with intellectual disability in NSW—an initial wave occurred in the late 1950s and early 1960s. Patients with moderate intellectual disability left government mental hospitals as they were able to find work and accommodation; this was the case at Peat Island for some patients. The next wave was in the 1970s when structured deinstitutionalisaton programs were introduced; for example, at Stockton patients were trained in living skills to prepare them for life in the community and were assisted to find accommodation in shared housing or with family and to find jobs. A subsequent wave of de-institutionalisation in NSW was driven by the 1983 Richmond Report and the implementation of the Disability

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7.3.5 Implications for the cohort

Although the Act was not directed towards persons with intellectual disability living in institutional care, it positively impacted the cohort with the subsequent introduction of the Disability Services Act 1993 (NSW), as discussed in detail in Chapter 8.

The employment policies under the Act did not have an immediate effect on the working members of the cohort. Change did occur, but it was an unintended consequence of the Act’s requirements for new conditions in on-site sheltered workshops. The closure of these workshops and the impact on cohort members is comprehensively explored in Chapter 8.

One intended outcome of the new Act was that people with disabilities would be given opportunity to be integrated into the community and, like others who had been de- institutionalised in the preceding decades, engage in supported work in the community “proving their capacity to work” (Jeanette McHugh MP, House of Representatives Hansard, 26th November 1986, p. 3729). Whilst we know that Gowlland and McLachlan were given relatively more opportunities to be ‘integrated’ with the surrounding community from the 1990s onwards—for instance, through regular excursions, annual holidays, time with and time away with family—this did not extend to de-institutionalisation into living in group homes for either.

7.4 NSW State Level Administrative Changes

This section examines the key NSW administrative frameworks in place from 1967-1989 that impacted the cohort (positively or negatively) throughout their adulthood. The discussion is based on relevant legislation, government and independent reports, and is presented in chronological order. Consideration is given to the issues facing the government at the hospitals where the cohort lived as adults and its policy responses.

In 1977, “mental retardation inpatient services” in NSW comprised 3,080 beds for adults and children (Health Commission of NSW, 1977, p 35). There was a steady decrease in the number of patients in the mental hospitals where the remaining cohort lived during these years.

Services Act 1986 (Cth). It is unknown if any of the cohort left either hospital as part of any of these waves of de- institutionalisation.

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7.4.1 De-gazettal of NSW mental hospitals

In 1973 a new “Fifth Schedule” was added to the Public Hospital Act 1929 (NSW), transferring psychiatric hospitals previously under the (then) NSW Department of Health to the control and supervision of the Health Commission of NSW (Health Commission of NSW, 1973, p. 49). This included many hospitals for the developmentally disabled, including Stockton.

Between 1978 and 1983 many of these Fifth Schedule hospitals were de-gazetted,89 because “[t]he Commission considers it desirable that those who are developmentally disabled should be identified as having different problems, and therefore be treated differently, from the psychologically ill” (Health Commission of NSW, 1981, p. 33). De-gazettal also meant that the patients ceased being involuntary patients under the Mental Health Act and became voluntary patients under the Public Hospital Act 1976 (NSW). Parents or next of kin were informed of the reclassification and asked to confirm their status as next of kin or, if required, to identify as a formal guardian (Ellmoos, 2010a; Mitchell, 2018).

These administrative changes marked a crucial philosophical shift from the State as the sole decision-maker for scheduled patients (parens patriae) to the acknowledgment of a role for individuals with developmental disability and their person responsible (or guardian) in ongoing decision making. Nurse Grahame Davis recalled: “[By] the late 1970s everyone was a voluntary patient [at Stockton]”.

Patients in Fifth Schedule mental hospitals, such as those in the cohort, had been ineligible for the Commonwealth’s invalid pension. As discussed earlier, they only qualified for the institutional pension and the SEA during the 1970s. The change from being in a “psychiatric hospital” to a “general hospital” gave them access to the more generous invalid pension. This also benefitted the hospital, which received a portion of this payment. Stockton, as the largest mental hospital in NSW for patients with “developmental disabilities”, was the first to be de- gazetted:

The revocation of Stockton Hospital being gazetted under the Mental Health Act has been successfully negotiated, and this revocation is to take place at midnight on 30th June 1978. The withdrawal of the appointment of Stockton Hospital as a mental hospital under the Mental Health Act, would mean that all residents would become informal, but

89 De-gazettal is the legal process of removing or decommissioning a statutory function.

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the Hospital would continue to operate under the Public Hospitals Act. This is seen as an advantage to the image of the hospital, to the regularization of the status of the residents, and hopefully obtaining pensions and other legal matters (Health Commission of NSW, 1978, p. 88).

For members of the cohort remaining in other Fifth Schedule Hospitals, an administrative change was made to the existing mental health legislation (see following section).90

7.4.2 Mental Health Act 1983 (NSW)

After several abortive attempts at mental health reform, a new Mental Health Act was passed in 1983. A Mental Health Act Review Committee was established in 1972, but it was an inter-departmental committee that framed the Mental Health Bill 1982. The Richmond Report (1983) also contributed by endorsing the exclusion of developmental disability from the definition of mental illness and thus the operation of the Act (Health Commission of NSW, 1982/1983; NSW Department of Health, 1983). This acknowledged that developmental disability was not a mental illness and therefore did not require a medical response but, rather, a community response to the social issues faced by persons with developmental disabilities. However, public feedback was mixed, with some expressing opposition to the change.91

The Mental Health Act 1983 (NSW) came into operation in stages from December 1983 (NSW Department of Health, 1983/1984), leaving persons with developmental disabilities subject to any other legislation and service provision arrangements.92 The portfolios for mental health and patients with developmental disabilities were also separated. NSW Department of Health needed time to adjust to the new legislative and administrative arrangements (1986/1987).

Following passage of the Mental Health Act 1983, two key administrative changes impacted the cohort—the separation of mental health and developmental disabilities services in August 1985 (NSW Department of Health, 1986), and the transfer of responsibility for

90 I do not know when Peat Island was de-gazetted from its 5th Schedule Hospital status. It can be anticipated that it was de-gazetted at around the same time as Stockton in 1978. That said, I have not located any administrative records that confirm this. 91 Comments on the Bill included: “Legislation changes in this area are long overdue”;“The basic philosophy / aims are supported”; “Patients have a right to be made aware of their rights etc” (NSW Department of Health, 1983, p. 28). 92 Schedule 3, Part II, Notes in 5: (2) A person is not a mentally ill person by reason only of any one or more of the following … (f) that the person has developmental disability of mind.

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developmental disability to the Department of Family and Community Services in July 1989 (NSW Department of Health, 1988/1989).

With the separation of health and disability services, the Department of Family and Community Services was able to focus on the social needs of persons with developmental disabilities in residential care or, preferably, in the community. The mental retardation nurses I interviewed generally saw this as a positive move.

At the time of the second change, there were approximately 2,000 persons with ‘developmental disabilities’ living in state hospitals. Of these, 806 persons lived at Hunter Developmental Disabilities Services (most at Stockton Hospital) and 160 persons at Peat Island (NSW Department of Health, 1989). These 2,000 patients became ‘clients’ of the Department of Family and Community Services and now lived in ‘residential centres’ rather than hospitals.

7.4.3 NSW reports and inquiries that impacted the cohort

This section identifies the key reports and inquiries into NSW legislation and policies that impacted on the cohort and the practices at the hospitals where they lived during their adult years.

7.4.3.1 Independent reports and inquiries

In 1981 the NSW Subnormal Children’s Welfare Association published an independent report on service provision and conditions at Stockton Hospital.93 Although the focus was on children, the findings had implications for adult females in the cohort. For instance:

There are a number of wards where children and adults NEVER leave the building. This information was volunteered by the staff (NSW Subnormal Children’s Welfare Association, 1981, p. 9).

This suggests that female members of the cohort with complex disabilities had few regular opportunities to leave the ward.

The NSW Parliamentary Report of the Standing Committee on Residential and Community Services on the Better Provision of Services to Handicapped People in NSW was published in 1981 at the request of the Minister for Youth and Community Services. Among

93 Stockton Hospital: a report on how the NSW Government cares for 830 intellectually handicapped children and adults in one of its facilities. 172 other findings, it documented the “absence of appropriate services and facilities” for handicapped people living in residential care (NSW Parliament, 1981, pp. 16-18). The Report recommended the separation of services for ‘handicapped’ people from those with mental illness; the development of a separate authority for handicapped persons to assume responsibility from the Health Commission; and for its recommendations to be implemented as a “major long term contribution to the International Year of the Disabled Persons” (p. 25). Although few of its recommendations were implemented (including the independent authority), it is likely that the Report encouraged the NSW Labor Government to pursue policy discussions, including commissioning David Richmond to undertake his wide-ranging Inquiry into Health Services for the Psychiatrically Ill and the Developmentally Disabled (1983) (Richmond Report).

[The] Richmond Report certainly was a breath of fresh air. Here was a Committee that was proposing the gradual breakdown of institutions. That was marvelous. But then we had to influence [to implement it] (interview with Jeanette Moss).

The Richmond Report was arguably the most influential (and controversial) NSW government report during the cohort’s adult years. The Inquiry addressed conditions at government hospitals and distinguished between the needs of the mentally ill and developmentally disabled. Part 2 of the Report on developmental disability propelled public discussion about de-institutionalisation and exerted pressure on hospitals (and nurses) to look outwards and engage their ‘developmentally disabled’ clients more routinely with the community.

The main recommendations were that persons with mental illness and developmental disabilities be offered services in a community environment and that existing psychiatric hospitals be progressively downsized and some closed. Eight of the 31 recommendations specifically related to persons with developmental disabilities living in government hospitals.94 Of particular importance in the present context was the recommendation to close Peat Island (Section 8.2, Part 2).

There were mixed reactions to the Report’s recommendations amongst the stakeholder groups associated with the cohort. By and large, my interviews with nurses, family, administrators and advocates indicated that those closest to the cohort—nurses who worked at

94 Richmond Report recommendations 1, 2, 19, 20, 23, 28, 30 and the recommendation to close Peat Island.

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the hospitals and family members—opposed the wholesale de-institutionalisation of patients and closure of the hospitals, suggesting instead that they be given increased resources. Other stakeholders did not necessarily share this view.

The unions representing the nurses and allied health professionals95 who worked at the hospitals where the cohort lived were also united in their opposition to both de- institutionalisation and hospital closures. Their public position was that it was premature until the Government confirmed allocation of sufficient resources and a clear implementation plan for de-institutionalisation. However, many of the nurses and government officials I interviewed suggested that the unions’ position was grounded in self-interest, namely, to protect members’ employment in the mental hospitals.

Industrial action followed, with a strike by nurses and allied health staff affecting Stockton Centre and Peat Island for nearly three weeks from August-September 1985 (Dickenson, 1992, p. 266). Gowlland’s family joined other Peat Island parents in a protest against Peat Island’s closure outside Parliament House. A subsequent change in government led to further delay in the de-institutionalisation process.

In reality, de-institutionalisation pre-dated the Richmond Report. By the time of its publication, those who remained in the hospitals were likely to be those with complex needs (NSW Subnormal Children’s Welfare Association, 1981, p. 2). The main impact of the Richmond Report on the cohort living in government hospitals was the subsequent shift in nursing practice and day program activities towards a focus on ‘normalisation’ and routine engagement with the community. Nurse Rowena Murray, who started nurse training at Stockton in 1979 and worked there on and off until the late 1990s, explained:

Before [Richmond] their care wasn’t individualised. It was all done as a group. The Richmond Report brought more recognition to deal with people on an individual basis. It drove the nurses crazy because there were so many additional boxes to tick. For example, we all had to take a person on a social outing once a week.

Another positive implication from the Richmond Report was the recommendation that surgery for mental hospital patients be undertaken in mainstream hospitals rather than as

95 The Health and Research Employees Association (HAREA) was an Australian Labor Party affiliate; the NSW Nurses Association (NSWNA) was not an affiliated union.

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previously at designated mental hospitals with surgical wards such as Ryde Psychiatric Hospital. This administrative shift seems to reflect a shift in administrative thinking in that ‘mentally handicapped people’ should receive medical treatment at the same public health facilities as other citizens. This welcome change came only after repeated criticism of the standard of health care and nutrition standards and feeding practices during these years at the sites where the cohort lived (Ministerial Advisory Committee, 1987; Richmond, 1983). That said, I note that Gowlland was receiving specialist surgery for his hernia at Hornsby general public hospital from 1981 onwards.

7.4.3.2 Other NSW inquiries

In November 1983 an independent report96 tabled in the Parliament of NSW was highly critical of the response of the Department of Health to a complaint97 from a parent regarding an injury suffered by his son at Peat Island Hospital. The Report made three relevant recommendations: that staffing ratios at Peat Island be increased; that the Department of Health and Peat Island should establish proper and adequate systems for reporting accidents and incidents; and that the Department compensate the parent. All of these were relevant to the future care of the cohort at Peat Island and other government hospitals. Jim Simpson, the lawyer for the complainant, recalled in interview that the case was “a really powerful illustration of the terrible things that can happen to people with intellectual disability [in respite care living in a large residential centre]”.

Five years later, the Report and Recommendations of the Ministerial Advisory Committee into the Review of Standards of Patient Care in Fifth Schedule Hospitals in New South Wales dated August 1987 (the MAC Report) was tabled in the NSW Parliament. The Review was established following a report from the Department’s Complaints Unit about excessive use of psychotropic medications at Cumberland Hospital. The terms of the Review were expanded to report on “the administration and management of Fifth Schedule hospitals and the standard of

96 Report of the Ombudsman of NSW Under Section 27 of the Ombudsman Act 1974, concerning Mr R.C. Osborn and the Department of Health, dated 18 October 1983. 97 The case of Ian Osborn was the first formal complaint to be addressed by an independent NSW government agency that I have found concerning either hospital where the cohort lived. 175 care provided in those hospitals” (R.D. McGregor, Letter from Secretary, NSW Department of Health, 1987).

I interviewed two people who served on the MAC Committee—its convener, Professor Merrilyn Walton, and Jeanette Moss, who was a Director of the NSW Council for Intellectual Disability at the time. The latter recalled the Committee’s visit to Peat Island:

Dr Parker and Dr Sainsbury couldn’t believe that this sort of place existed for persons with intellectual disability. The head banging and isolation stayed in their minds.

Walton had made both scheduled and unscheduled visits to Peat Island as part of the review.98 She described the scenario she witnessed:

Too many people in one room. People banging their heads. The rooms were like a pen. We wanted that place closed down and the parents opposed it.

Several of the MAC Report’s recommendations were of relevance to the cohort, namely:

• That all mental health and developmental disability institutions currently under the Fifth Schedule be progressively closed during the next five years. • That the Minister should give urgent attention to the closure of Peat Island Hospital. • The Committee was concerned by the widespread confusion about and lack of attention to the legal status and legal rights of the patients. … Finally, the mechanisms for detecting and redressing abuses need to be substantially improved. • That guardianship legislation be introduced (Ministerial Advisory Committee, 1987, pp. 41-44).

Some of these recommendations, such as the guardianship legislation, were implemented immediately, whereas others, including the closure of Peat Island, would take decades. The MAC Report also provided detailed recommendations for rapid improvement in the standards of patient care for persons with developmental disability in NSW government hospitals.

In response, yet another review99 was initiated to investigate accommodation options between institutional and community care for people with mental health and developmental disability. A key recommendation was the administrative transfer of portfolio responsibility for intellectual disability from the NSW Department of Health to the Department of Family and Youth and Community Services. This was implemented in July 1989, as mentioned previously,

98 Neither Walton nor Moss visited Stockton as part of the review, although other Committee members did. 99 Report to the Minister for Health (November 1988).

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thereby signalling the government’s move away from a medical model towards a social model of developmental disability which required an inclusive and whole-of-government response.

7.5 Impact on Stockton and Peat and Milson Islands

This section presents an account of how the women in the cohort are likely to have experienced life in Stockton Mental Hospital, and the corresponding experiences of the men in Peat and Milson Island Mental Hospital from 1967-1989. Callan Park Mental Hospital during the 1970s is also briefly discussed, as this is where Paul lived once Milson Island closed. It focuses in particular on the impact of the SEA at the respective hospitals.

7.5.1 Stockton

This was a period of both philosophical and practical change at Stockton. The shift in thinking towards patient exposure to the surrounding community is reflected in the Annual Report 1967-1968:

A feature which is quite apparent to all members of the staff is the new interest and awareness in the community to the existence and appreciation of the function of Stockton Hospital. This may be accountable to the general awakening in the community to the problem of mental retardation. It might also be to a lesser degree due to the tendency of many members of the staff and administration making every effort to involve members of the public in the various activities of the hospital (Director of State Psychiatry Services, 1969, p. 37).

This shift was driven by the impact of the SEA. Some 130 eligible patients took it up in 1967 (p. 37), and more did so the following year. One requirement was that participants receive ‘training’ with a view to living in the community. Accordingly, throughout the 1970s there was a strategic push to de-institutionalise those patients who were capable of living in the community. Stockton’s population profile was re-shaped by this focus on de-institutionalisation, along with the changing characteristics of children admitted from the late 1960s. By the 1970s, Stockton was no longer a hospital solely for intellectually handicapped women. According to the 1974 Annual Report: “the trend of discharging the more capable and those requiring minimal help continues, and these vacancies are replaced predominantly by the multiple handicapped or clients with severe behaviour problems” (Health Commission of NSW, 1975, p. 96).

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The built environment at Stockton during this period was similar to how it appears today, the main difference being the modifications that were made to provide more individualised forms of accommodation. The Director of Psychiatric Services in the 1968 Annual Report noted that in order to comply with SEA requirements, recipients were to live in “hostel-type accommodation” (1969, p.37). Accordingly, during the 1970s, disused staff accommodation was seconded to provide patients nominated for de-insitutionalisation with a smaller-scale environment and the opportunity to learn basic living skills (Forbes, 2018).

The patient group at Stockton changed dramatically between 1967 and 1989. By the late 1960s, Stockton focused on children and adults who were ‘intellectually handicapped’ (Director of Psychiatric Services, 1969; Health Commission of NSW, 1975). In my interview with Nurse Grahame Davis, he reported his first impression of the patients when he started working at Stockton in 1976:

I was really scared and taken aback. I had a mate who had worked there. I used to go through that shock regularly.

By the late 1960s, the emphasis was on admitting younger people. Young male patients were admitted in 1967 and in 1967/68 some 58 boys were transferred from Watt Street.

As mentioned, an important administrative focus for Stockton’s leadership during this period was the de-institutionalisation of patients able to live in the community. By June 1971, 199 patients had been de-institutionalised under the hospital’s program. With the appointment of additional domiciliary nurses, at least another 70 women were relocated into the community during the 1970s (Ellmoos, 2010a, p. 88). It is possible that one or more of the three females in the cohort who lived at Stockton may have been de-institutionalised during the 1970s.

Table 7.1 shows the Stockton patient population between June 1967 and June 1985. The population declined from 1967, in line with the policy and program focus on de- institutionalisation. For example, interviewee Robert Strike was transferred from Watt Street aged 10 in 1965 and left Stockton as a 17-year-old in 1972 to live in the community.

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Table 7.1 Stockton’s Resident Population during the Cohort’s Adult Years100

Year Population at end of financial year

1966-1967 1,117 (Annual Report 1967/8)

1967-1968 1,053 (AR 1967/8)

1969-1970 1058

1976-1977 830

June 1982 768 (AR 1982/1983)

June 1983 722 (AR 1982/1983)

June 1984 686

June 1985 686

The executive leadership at Stockton during this period implemented (or failed to implement) new policy directions. There were three medical superintendents during this period. Dr Brian Winfield Cook (1965–1973) envisaged that Stockton would evolve from a custodial environment to one that had a “training focus” and would be known as a “training hospital” (Ellmoos 2010a, p. 80). Dr Max West (1969-1972) was appreciated by staff and was keen on relocating eligible patients into the community (Forbes, 2019). Dr Russell Balandin (1973-1988) was also of the view that many people with intellectual disability could be trained to engage in work and live in the community, and should be supported to do so. In interview, nurses Davis and Forbes remembered Balandin positively. Balandin was also supportive of the SWHA’s introduction of the Grandparents Scheme for patients at Stockton in the 1980s which was widely reported as a success in interview and in historical sources.

The Matron in Charge during this period was Bessie Kromarty, who was promoted to the job in 1958 and remained at Stockton until her retirement in 1970. Matron Kromarty had a hierarchical leadership style, reflective of the ‘old guard’ who trained before and during WWII, and had high expectations of her staff. Her replacements were remembered by interviewees

100 From 1986 onwards population statistics for Stockton were consolidated with other “Hospitals for the Developmentally Disabled” in the Hunter Region, NSW, so exact population figures for 1986 onwards unknown (NSW Department of Health, Annual Reports, 1986-1989).

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Knox and Forbes as progressive and supportive of the medical superintendent’s vision. Nurse Davis reflected on the influence of senior nurses on patient outcomes at Stockton:

The senior charge nurse would flavour the ward. They would flavour the site. There were high standards. The domestic focus was on appearance … It was a medical model at Stockton.

This medically oriented nursing culture could be seen as running counter to the evolving rhetoric around de-institutionalisation.

In 1967, four NSW government mental hospitals offered nurse training leading to the Mental Retardation Training Certificate (MRTC). As a nurse training hospital, Stockton had a regular intake of young nurses from 1967. By the early 1980s, as nurse training began to shift to universities, patient admission numbers declined significantly and fewer nurses applied for the MRTC course, which was discontinued at Stockton in line with the recommendations of the Richmond Report.

The recruitment of trainee nurses to Stockton led to a sharp division in the workforce: a majority of young and relatively inexperienced nurses in training, and a smaller contingent of older, more experienced nurses who had trained in general or psychiatric nursing under the previous system and retained the old hierarchical leadership style. This cultural dichotomy in the workforce was described by one nurse interviewee, Jim Dow, who started his MRTC at Stockton in 1977. Dow recalled senior Nurse Bessie Knox as “militaristic” and “aloof”. He had to “report in” to her office at the start of night duty. In the late 1960s, males accounted for only 10% of the nurse workforce. He described the resulting socialisation with other young female nurses as “a distraction from client care”.

The introduction of the SEA in 1967 reshaped the day program options for the adult cohort. Stockton’s day program included employment in the sheltered workshop for those who qualified, industrial therapy (which may have included day program within the wards) and recreational activities inside and outside the hospital. Working for the hospital was phased out and no longer documented in the Annual Reports from around 1969 onwards, probably because the SEA required recipients to be either ‘training’ or working in a sheltered workshop.

At Stockton in the 1970s the most straightforward way of satisfying SEA legislative requirements was to work in one of two sheltered workshop known as ‘Stockton Industries’. In

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1968, 35 patients were working at the newly established Stockton Sheltered Workshop on site (Director of Psychiatric Services, 1968). Another community-based sheltered workshop was established at nearby Islington in the 1970s. By 1977, 45 patients were employed at the Stockton Sheltered Workshop and another 36 in Islington.101 By the mid 1970s, the program’s focus was on patients who could work:

The most rapidly growing area of the Hospital was that of the Stockton Hospital Industries. There has been a great increase in the manufacturing work at Stockton Hospital Industries and hence new rented premises were occupied. This was made possible by the support of the Stockton Hospital Welfare Association (Health Commission of NSW, 1978, p 88).

In 1985 an offsite Vocational Training Centre was opened in nearby Glendale and 20 Stockton residents attended the sheltered workshop full time (Ellmoos, 2010a, p 82). Other patients attended day programs on the wards and/or recreation programs.

De-institutionalisation at Stockton

As previously mentioned, de-institutionalisation of appropriate patients was a priority at Stockton during the 1970s. In 1970 the first Domiciliary Nurse, Val Forbes, was appointed as part of a team of three staff who trained selected patients to live in the community. One of her responsibilities was to find jobs (sheltered employment or other work) in the community and suitable accommodation for clients. This program was in part a response to the leadership philosophy of medical superintendents West and Balandin and the Commonwealth mandate under the SEA to have ‘mentally handicapped’ patients equipped to move into the community (Director of Psychiatric Services, 1969; 1970).

During the 1970s and early 1980s, the Stockton Hospital Welfare Association (SHWA) expanded its advocacy role and supported patients employed in sheltered workshops as part of the de-institutionalisation process. Stockton-trained nurse Grahame Davis remembered the SHWA as an active parent-led group:

They played a great advocacy role and influencer of change. At all these institutions [including Stockton and Peat Island] it was the parent groups who were involved.

101 The former closed in 1985 and the latter in 1996.

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The SHWA’s goals were essentially to enhance the residents’ quality of life and facilitate connections with family.

In the early 1970s, the SHWA helped to fund accommodation leases for residents moving into the community (Ellmoos, 2010a, p. 92). In 1976 it changed its constitution to allow it to provide financial support to former residents now living in the community (Ellmoos, 2010a, p. 92), and in 1978 it sought to expand sheltered workshop opportunities for residents by helping to fund the lease of new premises for Stockton’s Islington facility. This initiative meant that former residents and residents who were likely to be de-institutionalised now had somewhere to undertake supported work in a community setting.

In summary, 1967-1987 was a period of transformation at Stockton. ‘High functioning’ patients benefitted most from these policy changes as they were likely to be fully engaged in the sheltered workshop program, to receive the SEA, and to have some prospect of de- institutionalisation. For others, especially those with complex disabilities, the transformation was slower. Independent and government reports and nurse interviewees remained critical of the size and scale of Stockton and the slowness with which the needs of this latter group of patients were being met in the context of the new policy focus.

7.5.2 Peat and Milson Islands

These years were a period of transformation and turmoil for the cohort at Peat and Milson Island. The transformation was driven by the introduction of the SEA and the sheltered workshop program. The SEA was rapidly introduced here and, by 1970, was being received by nearly half of its population. Those who did not qualify remained on the less generous institutional pension until the invalid pension was introduced for all patients in government mental hospitals in 1980. Both the SEA and the Invalid Pension positively transformed the cohort’s quality of life.

The turmoil that occurred during the 1980s can be attributed to the impact of several critical government reports, two of which recommended the closure of Peat Island (Richmond, 1983; MAC, 1988). Many nurses, however, opposed the closure and the wholesale de- institutionalisation of clients. This put them in opposition to the position of the Department, and this in turn had an adverse impact on staff morale (interviews with Dow, Goddard and Williams).

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In 1967 there were five wards across the two islands, each housing more than 100 patients (Mitchell, 2018). From the late 1960s, buildings were modified to comply with the Commonwealth’s requirement that individual ‘hostel-style’ rooms be provided (in accordance with the SEA payment criteria). Milson Island closed in 1972. By the mid-1980s there were three open wards and two locked wards at Peat Island (interview with Dow). Also during the 1980s, several disused staff cottages on the mainland were seconded as residences for small groups of mobile and relatively independent patients.

During the cohort’s adult years, the patient population steadily declined at Peat Island (Table 7.2),102 initially due to the closure of Milson Island in 1972. In 1978 female patients were admitted on a permanent basis. Female patients had previously been admitted for respite care from 1976-1978 (Ellmoos, 2010b). Jim Dow, a Mental Retardation Nurse who trained at Stockton in 1977 and then worked at Peat Island from 1985-1987 described the Peat Island patients as generally “high functioning people”.

102 Population data for Peat Island 1967-1989 is based on analysis of Annual Reports from the NSW government department for health which had several name changes over the period in question.

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Table 7.2 Peat and Milson Island Resident Population 1967-1989

Year Resident Population

1966-1967 499

1967-1968 468

1968-1969 461

1976-1977 160

1979-1980 150

1981-1982 156

June 1982 143

June 1983 154

June 1984 159

June 1985 159

June 1986 143

June 1987 160

June 1988 158

Milson Island closed in 1972 due to sewerage problems, building decay, fire hazards, administrative disconnection from Peat Island and general unsuitability for “the treatment of mentally retarded patients to modern concepts” (Ellmoos, 2010b, p. 64). The final straw came in 1972 when burst water pipes caused flooding and the entire population was forced to relocate to Peat Island and other government mental hospitals such as Callan Park, Rydalmere and Morisset.

Peat and Milson Island went without leaders and medical superintendents during certain periods. This would have had a negative impact on the cohort as staff adjusted to management changes. Dr David Lindsay was appointed as the first resident medical superintendent for the hospital in 1965. He was reported as having an authoritarian leadership style and a focus on training in his approach to reform (Mitchell, 2018, pp. 122-123; Goddard, 2018). He went on extended leave in 1973, leaving senior nurses to fill the leadership role until 1976, when Dr Michael Connolly replaced him. In interview, Goddard recalled that soon after his appointment

184 he directed staff to allow residents to shower when they chose, but that “he soon changed his mind [because of the hygiene issues presented from the non-showering residents]”. Dr Connolly held the position until around 1986. He added the role of Regional Co-ordinator to his responsibilities from 1981, which undoubtedly impacted progress at Peat Island.

Dr Ted Freeman took up a temporary appointment of one year at Peat Island Hospital to cover for Dr Connolly in 1981, which he recalled as “a low point in medicine”. He described the closed Ward 4, which had received many men from Milson Island, as “like a prison … It was One Flew over the Cuckoo’s Nest in reality” (McCullagh, 2013, as cited in Mitchell, 2018, p 138).

Dr Karen Connolly became acting Chief Executive Officer around 1986, charged with closing the Island by 1990. Her reformist position was in opposition to that of the nurses’ union, the Peat Island Welfare Association and the Save Peat Island Committee. Industrial problems with staff ensued (Mitchell, 2018, p. 170).

By the late 1980s there were more or less equal numbers of male and female nurses at Peat Island, and the presence of more female nurses led to new approaches to patient care. Mcguiness, for instance, recalled giving a client a foot bath, much to the displeasure of male staff.

Industrial issues were of considerable concern during these decades. Many nurses at both Peat Island and Stockton were strongly opposed to its closure, particularly during the 1980s. Interviewee Jim Dow, who trained as a nurse at Stockton in the 1970s and then worked at Peat Island for a relatively short period from 1985-1987, commented on the impact of the organisational challenges at the latter during the mid-1980s, observing that the union was “very strong” and that Peat Island was “infamous for its resistance to change”.

There were two legitimate economic reasons for the opposition of the Peat Island Nurses Union representatives to the changes recommended by government. First, proposed changes to the industrial award structure would reduce the length of shifts from 12 to 8 hours. By working 12 hour shifts on 6 out of 7 days, “you could nearly double your wage” (Nurse Dow). Second, the de-institutionalisation of residents would lead to job losses. Unsurprisingly, the Nurses Union representatives at Peat Island were opposed to the closure.

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At the same time, there were diverse working cultures among the staff at Peat. At one end there were those, like Goddard, Williams and Mcguiness, who thought of the people at Peat as being like family and were accordingly devoted to their work. At the other extreme, according to interviewees Dow and Wright, were the highly unionised workers who were focused on self-preservation. There were a range of other attitudes in between.

The program offerings at Peat Island were directly influenced by the introduction of the SEA in 1967 and the subsequent professionalisation of the sheltered workshop that had been established in 1965. From 1967-1980, those who did not qualify for the SEA remained on the less generous institutional pension and would have attended the Industrial Therapy Unit or some other day program. All these activities, however, were colloquially referred to as ‘work’. By 1980, with the extension of the invalid pension to the remaining residents, everyone was in receipt of either the SEA or invalid pension.

During the 1980s, those who were not working in the sheltered workshop could attend the Activities Centre. There was also a Programs Officer, who organised a range of day activities. In interview, Nurse Dow commented that while many of these programs looked good on paper, in reality their success depended on the level of staff support:

There was the Activities Centre during the day. When I was there they [clients] would watch the staff play handball. There was very little effort made to put them through programs … Anyone who tried new ideas were up against it.

By the mid-1980s, “most of the clients went out during the day”, accompanied by staff. Until the late 1980s, residents could also attend a night school at nearby Mooney Mooney run by the Department of Education (Ellmoos, 2010b).

Similarly, David Richmond observed in interview that, during this time: “All the structures of the hospitals were against the implementation of normalisation”. They were “regimented controlled environments” which had their basis in the “medical model” and many of the nurses “had been brought up in the custodial environment”. Hence there was a contradiction between the institutional nature of the hospitals and the community focus envisaged for the activities programs.

The role of the auxiliary movement at Peat Island changed dramatically during this period. An active parent advocacy movement developed at Peat Island and, with the introduction

186 of the Commonwealth ‘pension’ for eligible patients in 1967, the nature of the auxiliary’s role changed. Although fundraising continued throughout the 1970s, they also directed their efforts to managing social events and running the canteen, where they also ‘trained’ patients in the use of money.

In response to the Richmond Report’s recommendation to close Peat Island, the Save Peat Island Committee was established in 1983 (Ellmoos, 2010b, p. 80). This Committee had representatives from Peat Island nursing staff as well as parents and was vocal in its public opposition to the closure.

7.5.3 Callan Park Mental Hospital

Callan Park Mental Hospital in Sydney’s inner western suburbs did not have a good reputation in the early 1960s. A decade later, it was still feeling the impact of the Royal Commission of Inquiry in respect of certain matters in relation to Callan Park Mental Hospital (1960), which criticised management, patient conditions and treatment at the hospital. When Paul lived there, it housed mentally ill persons, the intellectually handicapped and geriatric patients. Like other government mental hospitals of this era, it had a number of closed patient wards. The medical superintendent in the mid-1970s was relatively open to new ideas and approaches to care. The nursing workforce at Callan Park, however, was predominantly male and adopted a custodial approach to patient care.

7.6 Impact on the Cohort’s Adult Years

Two main themes emerged from my analysis of the impact of the changing legal and administrative framework on the cohort’s adult years. I have characterised these as ‘Citizenship, autonomy and choice’ and ‘Structure and meaning in everyday life’. Each is elaborated below.

7.6.1 Citizenship, autonomy and choice

The introduction of the SEA for eligible patients in NSW mental hospitals, and the extension of the invalid pension in 1980 to all “intellectually handicapped” patients in Australia’s mental hospitals had a significant impact on the cohort’s quality of life during their adult years. In interview, nurses did not differentiate between the two, referring to both as ‘the

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pension’. Cheree Goddard, who worked as an administrative officer to the executive at Peat and Milson Islands from 1970-2001, commented:

I think the biggest thing was the pension. I think that was the catalyst for people with disabilities. Not just for Peat. (cited in Andersen, 2009, p.80)

The impact was four-fold. First, recipients were required to engage in ‘work’ and/or ‘training’ over a regular working week. Second, the cohort now had more regular exposure to community living through ‘rehabilitation’. Third, recipients now lived in more individualised hostel type accommodation rather than dormitories and, for the first time, were allowed to keep their personal items in their own bedroom. Fourth, recipients—again for the first time—received their own personal ‘pocket money’. All of these can be seen as positive steps towards individual empowerment and citizenship inclusion.103

Ricky Gowlland’s administrative files during the 1980s are illustrative. They contain frequent correspondence, addressed to him, from the Commonwealth’s Department of Social Security (DSS), advising him of changes in his pension arrangements post-1967 (mostly notifications of an increase in payment). This is the first correspondence directly addressed to Gowlland, and is written in the same language used for all recipients of the pension.

According to Goddard and the nurses I interviewed, patients spent their pension ‘pocket money’ on shoes, clothes, additional toiletries, and holidays. The nurses also mentioned the use of pocket money to purchase extra food and drinks at the canteen and on outings in the community, cigarettes, presents for themselves (such as a radio) or gifts for a family member’s birthday.

Many of the interviewees who worked with the cohort during this time described the individuality that patients enjoyed from being able to choose how to spend their own money,

103 My use of the term citizenship has some parallels with T. H. Marshall’s ‘social citizenship’ (1963). Marshall identified three historical ‘stages’ in the progression of citizenship: civil, political, and the social. Social citizenship includes the right to economic welfare and the right to live the life of a civilised being according to the standards of the prevailing society (Bulmer & Rees, 1996; Marshall, 1963). My data indicated an increased engagement with social rights and greater community participation of people over this period. The Commonwealth’s introduction of the SEA in 1967 and its requirements for work/training, hostel style accommodation and community engagement was a major catalyst towards the cohort’s realisation of ‘social citizenship’. Ideas of social citizenship are strongly grounded in human rights and the expansion of these rights.

188 especially on clothing. The Annual Report in 1967/1968 remarked on the symbolic value of this new-found choice at Stockton:

More patients are doing their own shopping in groups and some on their own. The granting of pensions has given a boost to their morale and the acquisition of their own clothes and the frequent “perms” have added considerably to their personal appearance (Director of State Psychiatric Services, 1969, p. 38).

Prior to the introduction of the pension, Ellmoos (2010a) notes, “residents at Stockton were only allowed to wear clothes which had been produced in the hospital sewing room” (p. 84) and patients at Peat and Milson Island similarly “had no choice in what they were able to wear” (Ellmoos, 2010b, p. 66).

From the late 1960s, members of the cohort were gradually encouraged by the hospital to buy their own clothing with their new resources. Nurses took many patients to the local shopping centre for this purpose. Interviewee Craig Rickard, who worked at Milson Island in the summer of 1969-1970 as an orderly, recalled the novelty of taking small groups of men from Milson Island to the nearby Hornsby shopping centre to buy shoes and the impact of this scenario on local retailers: “We would walk into Lowes [menswear store] and the sea would just part”.

According to administrative documents and interviews with nurses, the cohort particularly enjoyed the weekly routine of spending their ‘pocket money’ on food and drinks, either onsite at the hospital canteen, at the local service station near Peat Island, the shopping centre or during outings to parks and other public amenities.

Access to holidays of one’s choosing was another empowering consequence of the ‘pension’. According to interviewee Cheree Goddard:

From the mid-1970s onwards they would use their money to go on holidays. Before that they would go to Rathmines or Tomaree (2018).104

However, there were also challenges associated with the introduction of the ‘pension’. First, the associated social reforms were not rolled out in the hospitals in an equitable or timely

104 Rathmines and Tomaree were facilities owned by the NSW Department of Health near the beach at Port Macquarie, reserved for patients from NSW mental hospitals in the mid-1960s onwards. This had meant that the cohort would only have been able to holiday with other ‘intellectually handicapped’ patients.

189 manner. Not everyone received the new ‘pension’ in 1967. Patients who were still on the institutional pension in the late 1960s were not eligible to receive ‘pocket money’ nor live in the newly renovated hostel-style accommodation. At Peat Island, these patients remained dependent on the fundraising and generosity of the auxiliaries:

The pocket money for patients who do not receive other monies continues to be received from the Parents and Citizens Association (Director of State Psychiatric Services, 1970, p. 37).

This situation was exacerbated for patients who had no family to make regular contributions to their trust account (p. 37). Nurses noted the staggered roll-out of the ‘pension’ reforms also led to inequities among patients. Nurse Borg commented in my interview that patients at Stockton were still wearing government issued clothing throughout the early 1970s.

Second, the auxiliaries had to redefine their purpose. By 1970, half of the patients at Peat and Milson Island had moved onto the ‘pension’ and now had ‘pocket money’. Consequently, the auxiliaries’ role as fund raisers became less important, and they shifted their focus to ‘training’ the ‘boys’ in how to use their ‘pocket money’ to prepare for shopping for their own clothing and other personal items.. This was evident at Peat Island as early as 1969:

This hospital continues to derive very considerable benefit from the activities of the Parents and Citizens Association whose canteen plays a vital part in the training of patients in the use of money (Director of State Psychiatric Services, 1970, p. 37).

A third challenge was that not everyone could access the pension and its pocket money equitably. Some were taken advantage of by their peers. Norm Dyer, who worked as a nurse at Peat Island between 1961 and 1983, recalled:

When the pensions first came in, amongst the clients you had the brighter ones and the duller ones and after a week or two the brighter ones thought ‒ Huh ‒ and they would … get a 50 cent piece and swap it for a 20 cent piece but usually they’d give their paper money. . . They would get the paper money from the less intelligent client and give them a little shiny coin which they thought was very nice (cited in Andersen, 2009, p. 16).

Location was a further source of inequity. As interviewee Goddard recalled: “The Milson Island guys had heaps of money because they didn’t do anything there” (2018). As well, there was no canteen at Milson Island until 1969.

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For others, the nature of their disability led to inequity. Those with profound disabilities had to rely on staff or family members to assist with purchases on- and offsite.

Finally, the sum left to the individual after the hospital took its payment did in fact equate to ‘pocket money’ as opposed to an amount that might transform the cohort’s lives. Nonetheless, introduction of the pension and the access to personal monies it provided had a truly transformative impact on the cohort. It was an administrative turning point embracing elements of social citizenship, autonomy and the bolstering of social inclusion.

7.6.2 Structure and meaning in everyday life

The terms of the SEA required the recipient to engage in some form of “training” (Director of State Psychiatric Services, 1969, p. 5; 1970, p. 7). Accordingly, the cohort would have experienced something resembling a conventional working week—Monday to Friday in the sheltered workshop on site or at the Industrial Therapy Unit or, during the late 1960s, contributing to the functioning of the hospital. For the cohort, this likely meant working at the sheltered workshop.

The recipient was also expected to live in hostel-type accommodation and interact with the wider community, with a view to eventual de-institutionalisation. These administrative requirements established the framework for the cohort’s weekly activities from the 1970s through to the 1990s. Interviewees and archival material indicate that this new structure had a positive impact on the wellbeing of the cohort. Three kinds of ‘work’ were available, as elaborated below.

In the early years after the introduction of the SEA many recipients undertook work that supported the running of the hospital. At Stockton in 1968, for example, female recipients looked after the younger children, or worked in the sewing room and laundry (Director of State Psychiatric Services, 1969, p. 37). The transition into employment in the sheltered workshops occurred from the early 1970s. Nurse Dyer described this transition:

ND: ... there were a couple of staff that took kids on outdoor activities like mowing lawns and digging ditches and shifting trees and that sort of stuff, the dairy, the vegetable gardening etc but as time went by and those sort of activities lessened, like the dairy closed etc then the activities units and those sort of places started up where the kids went to spend their time fruitfully during the day. They did production work like sheltered

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workshop producing stuff on contract for different firms. They had to tender for it. There were specialised staff that worked there that looked after the sheltered workshop.

Interviewer: Is that what you called an Industrial Unit before?

CG: The ITU. It was like a sheltered workshop (cited in Andersen, 2009, p. 60).

Sheltered workshops operated at the hospitals to satisfy Commonwealth requirements for payment of the SEA from 1969 to the late 1990s. The purpose of sheltered workshops and ITUs was to engage the cohort in work, training and daily activities that led to outputs, akin to conventional understandings of work. In return, participants received the SEA, and its pocket money. Some also received ‘extra’ money for contract work, but this was not always the case as Goddard explained at interview:

There was a Sheltered Workshop on site at Peat Island. But there were no additional individual payments for work that was done. There was a separate account there at the Sheltered Workshop and any output work (eg. packaging scrubbing steel). Any money that was made went back into the workshop and towards a Christmas party. The Sheltered Workshop was vocational (2018).

The hospitals’ Industrial Therapy Units (ITUs) were part of the SEA administrative mix. The ITU’s role was essentially to provide training. Sometimes, as in the case of Peat Island, the sheltered workshop and ITU were a combined operation on the same site. Typical activities at the ITU included occupational therapy-type training in the skills needed to graduate to a sheltered workshop and become more independent. Industrial Therapy was for those unable or not yet ready to work in the contract output environment of the sheltered workshop. Both activities were colloquially referred to as ‘work’, and were mostly recalled as positive experiences in interviews with family members and staff.

The provisions of the SEA reflected the Commonwealth’s goal of recipients becoming more independent in their activities of daily living and, if feasible, de-institutionalised. To this end, former staff cottages at Stockton were repurposed so that small groups of patients could move in and be trained to live independently. The patients were instructed in basic living skills, such as cooking, cleaning and shopping, with a view to them becoming self-sufficient. For

192 many, their lack of exposure to such life skills was strikingly apparent, as Stockton Nurse Val Forbes explained:

The biggest problem was teaching them to strike a match (to light the gas stove top). They had never seen matches.

In addition to training, they also went to ‘work’ onsite.

Some patients did undergo de-institutionalisation during this period, and it is quite possible that some of the female patients in the cohort may have left Stockton at this time, especially the higher functioning women. In 1970, Nurse Forbes was invited to take up the newly created position of Domiciliary Community Nurse Liaison at Stockton. In my interview with her, she described the then Medical Superintendent as “most progressive” and spoke with pride of seeing patients leave Stockton to live independently in the community in Newcastle.

Patients nominated for de-institutionalisation at Stockton were typically engaged in employment at the hospital or sheltered workshop, either on-site or in the community. They represented the successful outcome of the Commonwealth’s 1967 agreement with NSW. In contrast, I heard no accounts of comparable programs at Peat Island, although de- institutionalisation may have occurred there during the 1970s. The initiatives described at Stockton may have been driven in part by the ‘progressive’ philosophy of the leadership. In addition, Stockton had, by 1969, become a training centre for young intellectually handicapped persons, and there would likely have been pressure to discharge eligible patients.

Many in the cohort enjoyed ‘work’, as revealed in interviews with nurses and in official government documents. Some enjoyed the routine structure of the work week—getting up, having breakfast and going to and from work. An added benefit was that ‘work’ took place in a different physical environment from the hospital.

Some found pleasure in working with friends. Nurse Mcguiness described how a client would collect a friend from another accommodation unit and the two would happily walk together to ‘work’ at the Industrial Therapy Unit, where the sheltered workshop was also situated.

Nurse Bob Williams described the type of work clients performed at the sheltered workshop in the late 1980s:

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It was basically packing jobs. Process line type work. Some clients were good at it and worked very well at it. Some clients went for the social atmosphere. And some clients went and left. But it was … well for not everybody was it real employment but for some it was. For some it was an activity and it was – it was their job. A lot of clients saw it as their job and got most irate if you wanted to stop them from going for work, for instance if they had to see the doctor – “I’ve got to go to work, that’s my job”. So yeah, it was valuable to them (cited in Andersen, 2009, p. 29).

For many, then, work at the sheltered workshop was a positive experience: it offered a sense of contribution, meaning and place. On the practical side, it qualified patients for the SEA, with its associated hostel accommodation and ‘pocket money’. Indeed, during the 1970s—until the Invalid Pension became available to all patients in 1980—it was in the cohort’s best interest to ‘work’.

A document from the early 1980s in Gowlland’s NSW Health files is illustrative. Titled “John Gowland” (a misspelling and Ricky’s formal name), it is a hand-written patient profile with a photo,105 perhaps something that would have been placed on the wall in the nurse unit manager’s office to help staff identify patients. Gowlland’s “likes” were identified as “outings” and “work” and his personality is described as “likeable” and “helpful”.

However, there were other experiences of work and training. Not everyone was able to take advantage of the work program associated with the SEA. For example, those with profound disability were unlikely to have been able to cope with the demands of contract work in the sheltered workshop. A small number within the cohort would have been unable to engage with the training on offer at the ITU. These people would have stayed on the institutional pension and depended on such stimulation as was provided in the day programs until 1980, when the invalid pension became available to them.

Not everyone wanted to work. Some did not enjoy it but had to attend in order to qualify for the SEA. The work could be repetitive and boring. For most, however, there were no real alternatives. The cohort was now deemed too old to be educated at school. In any case, the night school at adjacent Mooney Money had closed by the mid-1970s.

105 This was the first photo of Gowlland in his files.

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In summary, the policy intent articulated by the Director of Psychiatric Services in the Annual Report for 1968/1969, that patients should work ‘out in the community’, was poorly realised (1970). Certainly Stockton established a successful community-based sheltered workshop in Newcastle that operated until 1996 (Ellmoos, 2010a, p. 112), but the majority of patients remained at Stockton—‘working’ at the sheltered workshops or industrial therapy workshops or participating in on-site day programs. In contrast to Richmond’s vision, they continued to eat, work and sleep in their hospital.

7.7 Conclusion

This chapter has discussed the critical role of the Commonwealth’s social security reforms in the cohort’s adult years. With the introduction of the SEA and its associated requirements for work or training, cohort members such as Gowlland and McLachlan experienced a structured weekly routine. Most enjoyed ‘work’. The extension of the invalid pension meant that all patients were financially better off by 1980. For the first time, individuals had their own ‘pocket money’ which, although a relatively small amount, was enough to give them some autonomy and choice.

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Chapter 8: Ageing, Retirement and Dying

This chapter describes the Commonwealth and NSW administrative frameworks that informed the surviving cohort members’ late adult years, including the deaths of two of them. During these years, the philosophical underpinnings of these frameworks shifted from a health model to a social and community model. This shift meant that persons with disabilities were treated less as a category in the medical system, and more as individuals to be included in the community. In 1989, four members of the cohort were known to be still living in residential accommodation provided by the Department of Family and Community Services (the Department). McLachlan, then aged 38, and Gowlland, 41, were both living at Peat Island and remained there until its closure in 2010, when they moved to Casuarina Grove, the Department’s new purpose-built aged care facility for persons with intellectual disability.106 Gowlland died in 2012 whilst living at Casuarina Grove. Richard McLachlan was still alive at the time of writing (December 2019) aged 69. I was able to interview him in January 2019 at his home in Casuarina Grove.107 The chapter begins and ends with two key administrative changes. It starts in July 1989, when responsibility for persons with developmental disability living in NSW State Hospitals— including Stockton and Peat Island—was transferred from the NSW Department of Health to the NSW Department of Family and Community Services. The chapter ends in 2013, which coincided with the introduction of the Commonwealth’s National Disability Insurance Scheme and the repeal of the Disability Services Act 1993 (NSW). The Disability Services Act 1993 (NSW) had significant influence throughout the latter stage of the cohort’s lives and was replaced in 2014. By 2013, the remaining cohort member who lived at Casuarina Grove (McLachlan) had been living there for nearly three years.

106 The whereabouts of the other two surviving de-identified cohort members at this time are unknown, although we know that both were alive in November 2018 and that one of them died in December 2018. If any female members of the cohort were still alive, they may have been living at Peat Island, Stockton or, later, Casuarina Grove during these years. 107 Ricky Gowlland and Richard McLachlan were the only members of the cohort I was able to meet. I instantly recognised Richard as a peer of my uncle’s on meeting him for the interview in 2019.

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8.1 Key Administrative Frameworks that Impacted the Cohort’s Lives

The cohort’s retirement years coincided with ongoing reforms at Commonwealth level, including refinements to disability social security payments, although the overarching legislative and policy framework remained focused on human rights. A shift towards individualised person- centred care took place towards the end of the 1990s. For the cohort, the most noteworthy reforms during these two decades occurred at State level and were reflected in administrative and service delivery changes. As Nurse Williams explained:

I think that the philosophy of care has changed from a straight out congregate philosophy where we look after everybody in this institution to one where we look at individual needs of the client and we have the individual planning process now. It’s a tool where at specific dates throughout the year and as well as that throughout the year we look at individual needs of every client. There is a far greater emphasis now-a-days on the individual. The activities, the entitlements that were often done as part of a large group has changed over time so that people get a more individual service and are treated more as individuals (cited in Andersen, 2009).

8.1.1 International Agreements

In 2007 and 2008, respectively, Australia signed and ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The UNCRPD sought to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities and to promote the respect of their inherent dignity” (United Nations, 2008, Article 1). The UNCRDP was a binding international agreement with eight key principles that outlined the obligations of governments to ensure that those rights were respected, protected and fulfilled (ADHC, 2013, p. 5; United Nations, 2008). The key administrative mechanisms for incorporating these principles in intergovernmental agreements and service delivery to people with disability in Australia were articulated in the National Disability Agreement (Council of Australian Governments, 2009) and the National Disability Insurance Scheme (NDIS) (AIHW, 2019).

The Disability Inclusion Act 2014 (NSW), which replaced the Disability Services Act 1993 (NSW), was informed by the UNCRPD Principles (ADHC, 2013, p. 5). The NSW disability policy document Stronger Together 2 (NSW Government, 2011) asserted its

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commitment to these principles, particularly to Principle 3, “Full and effective participation and inclusion in society”. This principle set the tone for service delivery expectations for the cohort in this final phase of their lives.

8.1.2 Commonwealth

8.1.2.1 Legislation

The two main Commonwealth legislative reforms that impacted directly on the cohort at this time involved social security and sheltered workshops.108 Each is discussed below. During this period, there was a major restructuring of social security assistance for people affected by long-term disabilities (Dapre, 2006b, p. xix). These changes were introduced under the Social Security (Disability and Sickness Support) Amendment Act 1991 (Cth) and were part of a broader range of measures known as the Disability Reform Package introduced in 1991. This package aimed to improve the participation of people with disabilities in employment, education and training, their ability to contribute to the community, and to ensure that they received adequate and secure income support (Dapre, 2006a, p. 216). The reforms targeted people with a significant level of disability that rendered them unable to work full-time.

The Disability Support Pension (DSP) was introduced in 1991, replacing the Invalid Pension and Sheltered Employment Allowance. It also absorbed the provisions of the Disability Wage Supplement (introduced in 1994) when that independent payment was abolished on 1 January 1998 (Dapre, 2006b, p. 26). In relation to the cohort, Gowlland’s administrative files

108 Other key Commonwealth legislation introduced that had an indirect impact on the adult ageing cohort, included: the Australian Human Rights Commission Act 1986 (Cth) and the Disability Discrimination Act 1992 (Cth). Both legislative instruments affirmed the Commonwealth’s human rights platform in relation to disability and informed evolving community attitudes to Australians with a disability. However, neither of these Acts was mentioned by interviewees as having had a direct impact on the cohort. Rather, they can be seen as part of an administrative backdrop of support that is rights based and which provides a complaint mechanism for persons with a disability. The National Disability Insurance Scheme Act 2013 is a social security framework that supports the independence and social and economic participation of people with major permanent disabilities. In 2019, of the 4.3 million Australians with a disability, 760,000 received the Disability Support Pension and an additional 460,000 were NDIS participants (AIHW, 2019). The NDIS provides eligible participants with significant resources under a personalised plan geared towards meeting their particular needs (Carney, Then, Bigby, Wiesel, & Douglas, 2019, p. 3). Since the NDIS does not cover persons aged 65 years and over unless they have been accepted into the scheme before that age, it does not apply to the cohort. Richard McLachlan turned 65 in 2015. Accordingly, it can be assumed that the NDIS had only indirect relevance to the cohort via its support for a person-centred approach to program delivery.

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show that he received the DSP from 1992 until he reached retirement age. Any income he derived from the sheltered workshop at Peat Island would have topped up his DSP, which retained the free-of-income-test allowable earnings and then a generous ‘tapered’ income test (this was more generous when compared to its predecessor, the Institutional Pension). Thus the DSP allowed members of the cohort to engage in a certain amount of paid work before the income from that work reduced the pension. Once the cohort became eligible for the aged pension (at that time, 60 years for women and 65 years for men), they were automatically transferred from the Disability Support Pension. Gowlland moved to the age pension in 2011

and McLachlan in 2014.

After the introduction of the Disability Services Act 1986 (Cth), the “older style sheltered workshops … moved into a business model” (McDermott, 2007, p. 6). Sheltered workshops now had to be located in the community and be viable businesses. This led to the closure of the sheltered workshops at Peat Island and Stockton by the early 1990s. By 2008, all supported employment providers were functioning as commercial businesses known as Australian Disability Enterprises. These were funded by the Commonwealth to provide employment for people with moderate to severe disability who needed support to participate in employment (McDermott, 2007, p. 8). Only a small number of clients from Peat Island were working in these organisations at this time; neither Gowlland nor McLachlan did so.

Under the intergovernmental National Disability Agreement (NDA) (commenced 2009), disability employment services were provided by the Commonwealth Government. There are two types of such services: supported employment (replacing sheltered workshops) and open employment. Under the NDA, States and Territories were responsible for the provision of most disability services, such as day programs and group homes. As we have seen, this was the State’s main area of responsibility for the cohort. The Australian Senate Standing Committee in 2007 noted that these intergovernmental arrangements had resulted in considerable inflexibility in the provision of disability services (McDermott, 2007, p. 6).

8.1.2.2 Intergovernmental agreements

In the decades following the introduction of the Disability Services Act 1986 (Cth), numerous intergovernmental agreements addressed the division of Commonwealth and State

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responsibilities with regard to disability. These agreements impacted the cohort to a varying extent.

First, the new intergovernmental agreement, the Commonwealth State Disability Agreement (CSDA) (introduced 1991) sought to clarify the responsibilities of Commonwealth and State in relation to disability legislation and policy.109 For example, under the Disability Services Act 1986 (Cth), the Commonwealth was responsible for providing funding for accommodation but it lacked the constitutional power to deliver this support. Accordingly, the first CSDA concentrated on the Commonwealth’s funding powers, including setting the terms whereby accommodation funding flowed to the States to enable them to provide services. This included Commonwealth funding for the NSW Government to provide residential centres like Peat Island and Stockton.

The Disability Services Act 1986 (Cth) provided an administrative framework for the funding arrangements with the States. Funding was conditional on the principles and objects of the Act being met to the Commonwealth Minister’s satisfaction (ss 3 and 5). State and Territory governments were required to introduce or modify existing legislation to facilitate these funding arrangements (ADHC, 2013; Llewellyn, 2016; NSW Department of Community Services, 1991). The legislation in NSW compliant with the Commonwealth’s requirements was the Disability Services Act 1993 (NSW).

As noted on the previous page, the National Disability Agreement (NDA) established the framework for reform of government support for people with disability. It is about services for people with a disability. One of the key responsibilities of the NDA was to ensure that State and Territory legislation aligned with national policy and reform objectives (ADHC, 2013, p. 42). However, since the introduction of the NDIS, the NDA has been described as “outdated” in the sense that the NDIS sets the new context of disability service provision in Australia (Productivity Commission, 2019, p. 3).

109 Under the CSDA, the States were responsible for funding and co-ordination of disability and family support, recreation, community access, alternatives to employment, and accommodation. The Commonwealth had responsibility for funding accommodation, the administration and funding of employment services and associated social security arrangements, and funding advocacy services (Phillips, 2008).

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The National Disability Strategy 2010-2020 (NDS) aims to ensure that Commonwealth, State and Territory policies and programs that engage people with disability and their families and carers align with the UNCRPD. The NDS is based on three imperatives: human rights, social inclusion and economic inclusion within the context of the Australian community.

8.1.2.3 Inquiries

Two reviews during these decades had a direct impact on the cohort.

The 1994 Review of the Commonwealth Disability Services Program (the Baume Review) focused on the employment-related aspects of the program underpinned by the Disability Services Act 1986 (Cth) (Baume & Kay, 1995). The review was critical of existing block-funded employment services for people with disability, which emphasised inputs rather than outcomes and was characterised by unmet demand, inequitable distribution of resources, cost variation and lack of coordination. The Baume Review recommended that funding should be attached to the individual rather than the employment provider, which signaled a preference for open employment and emphasised consumer choice and competition (Baume & Kay, 1995; Disability Employment Australia, 2016; Lindsay, 1996).

The 1995 Australian Law Reform Commission’s Review of the Disability Services Act (1986) focused on the extent to which the services under that Act were meeting legal requirements and the Government’s human rights and social justice goals. Of relevance to the cohort was the finding that sheltered workshops of some kind were still needed for persons with complex disabilities. Accordingly, it was determined that: “Sheltered workshops and other proscribed services which offer good quality support and fair wages as defined by the standards will continue to be funded by the Commonwealth” (ALRC, 1995, p. 59). Existing sheltered workshops, such as those remaining at Peat Island, were given a short time in which to become compliant or be wound up.

8.1.3 Changes at State level

This section evaluates the transformation in disability policy and practice in NSW during this period, which produced several benefits for the cohort. Administrative changes were supported by new legislation based on more progressive principles, namely, the Guardianship Act 1987 (NSW) and the Disability Services Act 1993 (NSW). These statutes were accompanied

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by a range of policies aimed at giving effect to the principles expressed in the legislation. While acknowledging the value of these policies, former ADHC 110executive Tracy Wright commented:

What we didn’t do well is implementation and change management … In my head most of the policy was good. The question was about how well resourced we were, and enabling implementation.

8.1.3.1. Legislation

The Disability Services and Guardianship Act 1987 (NSW) (DSG Act)111 marked a progressive shift in the way that administrative decisions were made, consent was obtained, and services were provided to people with disabilities in NSW. For the first time, it facilitated access to a substitute decision-maker for an adult with a cognitive capacity (adult guardianship), though this was not used by members of the cohort. The DSG Act also included provisions for regulating disability services according to seven guiding principles (s 4)112 and via the Act’s objectives.113

In 1988 the DSG Act was renamed the Guardianship Act 1987 (Guardianship Act) and given a broader remit to apply to all adults who lack decision-making capacity.114 Of particular relevance to

110 The NSW Department of Family and Community Services and the Department of Community Services had portfolio responsibility for disability services from 1989-1995. In April 1995 the Carr Labor Government announced the establishment of the new Ageing and Disability Department (ADD), or as it was later known the Department of Ageing Disability and Home Care (ADHC), whose responsibilities included the operation of the Large Residential Centres where the cohort lived (ADD Annual Report 1994/1995; 1995/1996). These arrangements stayed in place until 2018. 111 The Act was Based on legislation enacted by Victoria in the previous year (Cocks Committee, 1982; Health Commission of Victoria, 1983). The service provision standards noted in the DSG Act later moved to the Disability Services Act 1993 (NSW). 112 In the present context, the most important of these guiding Principles in the DSG Act were: (a) The welfare and interest of such persons should be given paramount consideration. (c) Such persons should be encouraged, as far as possible, to live a normal life in the community. (d) The importance of preserving the family relationships and the cultural and linguistic environments of such persons should be recognised. 113 Relevant Objectives in the DSG Act included: (a) To identify services that are necessary to promote the well-being of persons who have disabilities; (b) To ensure that such services are provided for those persons so as to enable them, as far as possible, to live a normal life in the community. 114 Justine O’Neill, who worked at the NSW Office of the Public Guardian from 2003 - 2018, including as Assistant Public Guardian, commented: “There is a lovely equality in the Person Responsible provision in the Act as it applies to all of us - not just people with a disability”.

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the cohort was a new provision115 that identified a ‘person responsible’ who was empowered to make medical and dental decisions for a person who lacked capacity. Another provision allowed for the appointment of an adult guardian by the NSW Guardianship Tribunal, since there was no other practical basis at common law for another person to make decisions for an adult who lacked the capacity to do so (White, Willmott, & Then, 2018). No member of the cohort could have had an adult guardian before these new laws came into operation in 1988. Even then, unless a person was willing to accept the appointment, the role would have been performed by a statutory office such as the NSW Office of the Public Guardian (Carney, 1989).

Professor John Taplin, who was a member of the Guardianship Board, recalled in interview the impact of the establishment in 1989 of the Office of the Public Guardian on people with a disability living in residential centres:

The Office of the Public Guardian had a strong sense of advocacy. They were the human vigil.

The aspect of the legislation of potentially more importance for members of the cohort was the definition and application of the concept of a “person responsible”.116 To avoid the situation in which someone living in residential care had no such designated person, the definition expressly included “a person who was a person responsible for the person immediately before the person came to be in the care of the Director-General”.117 In this way, most members of the cohort’s age group had a person responsible without the need for a formally appointed guardian (interviews with West and Mcguiness; Carney, 2019). This provision also avoided the need for more than one person to be engaged as the person responsible for decisions and consent regarding medical and dental matters (Browne, 2019; NCAT Guardianship Division, April 2016).118

Unsurprisingly, many nurses and family members found it hard to grasp the implications of these administrative changes and it took some time for them to understand the differences between a person responsible and a formal guardian (Gowlland administrative files; interviews with Andrews, Miller, and O’Neill). Under the statutory requirements of the DSG Act, the

115 See s33 (4) Guardianship Act 1987 (NSW). 116 S 3(1) DSG Act. 117 “Person responsible” s 3(1)(a)(iv) DSG Act. 118 Also see Guardianship Act s 33A(4).

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nurses who looked after the cohort had to establish if a person responsible was still able to be involved in the client’s life (assuming there had been such a person prior to their admission). In the late 1980s, Nurse Mcguiness recalled making phone calls to families who had not been in contact with their family member for years (in one case, decades) and receiving mixed responses. While some appreciated the call, others did not want to maintain a connection with their family member. For the latter group, the only option was to apply to the Guardianship Tribunal for the appointment of the NSW Office of Public Guardian as a guardian, but this was rarely sought (Carney, 2019).

The second NSW statute that had a direct impact on the cohort was the Disability Services Act 1993 (NSW), which was developed “in response to requirements of the 1991 Commonwealth and State Disability Agreement and mainly provides for delivering, funding and regulating specialist services for people with disability” (ADHC, 2013, p. 5).119 It was steeped in human rights values.120 The Act governed Schedule 3 facilities and introduced provision for ‘transition plans’ (s7) to upgrade the cohort’s accommodation to comply with the new principles within specified periods of time and to work towards the closure of large residential centres such as Peat Island and Stockton. This would prove to be a challenging task for the centres, which constantly fell behind their schedules (interviews with Wright, Williams and Russell).

The Act was replaced by the Disability Inclusion Act 2014 (NSW) to reflect changes in NSW’s disability policy, notably a focus on independence for people with a disability, a consumer-driven approach to service provision, and support for full participation in society.

8.1.3.2. Policy and program initiatives

A number of policy guidelines relevant to the provision of services for people living in government centres were introduced during the 1990s. The most significant of these in terms of

119 In interview, Professor Taplin explained that “all states had to comply with the Commonwealth’s Disability Services Agreement Act 1986 to get Commonwealth funding under the Federal Act. States had to comply.” 120 Introducing the legislation, the Minister for Community Services, the Hon Jim Longley MP, described it as “a significant positive advancement for the well-being of people with disabilities, their families and their carers. The bill will promote the interests of people with disabilities by ensuring that people with disabilities have the same basic human rights as other members of our community” (Disability Services Bill, NSW, Parliamentary Debates Hansard Legislative Assembly, 11 March 1993, second reading speech at p. 769). https://www.parliament.nsw.gov.au/hansard/Pages/home.aspx?s=1

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reform and positive impact on the cohort were the Disability Service Standards (DS Standards) (1998, 2012) and the NSW Government Stronger Together framework (2006, 2011).

NSW’s Disability Service Standards were introduced in 1998 to guide the achievement of the Act’s objectives (ADHC, 2012). The six standards were directed towards the following domains: rights, participation and inclusion, individual outcomes, feedback and complaints, service access, and service management.121 The DS Standards were updated in 2012 to make the planning requirements more consumer-focused and person-centred. They were rights-based, aligned the requirements for service providers with the UNCRPD, and advocated a whole-of- lifespan approach (ADHC, 2012, pp. 7-8). These Standards informed the expectations of service delivery to the cohort.

Related ADHC policies,122 in particular Stronger Together 1 (2006) and Stronger Together 2 (2011), drove disability reform in NSW in the early 2000s. In interview, the then NSW Minister for Disability Services John Della Bosca (2005-2007) commented: “Stronger Together was to make up for the failures of de-institutionalisation … It was a suite of measures for families and people with a disability to give them what they needed”.

Under Stronger Together 1, a specific commitment was to ensure ADHC’s services complied with the Disability Services Act 1993, in particular the failure of existing residential centres to do so. Stronger Together 2 committed the NSW Government to implementing person- centred approaches and systems by July 2014, providing age-appropriate services and closing residential centres. It sought to shift from the previous block funding arrangements,123 which ADHC conceded were “inflexible and give people with disability, their families and carers little opportunity to decide how and by whom their needs are met, and support is delivered” (ADHC, 2013, p. 13).

121 Robert Fitzgerald, the NSW Disability Services Commissioner 1999-2004, suggested in interview that the standards “were focused on community access”. 122 Stronger Together 1’ (applied 2006/7-2010/11) (NSW Government, 2006) and Stronger Together 2 (applied 2010/11-2015/16). 123 Block funding, in the context of ADHC, is where the Department pre-approves service providers and these are the only service choices that can be delivered to clients to meet a ‘specific criterion’ in individualised plans.

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8.1.3.3 Government and independent inquiries

Several independent inquiries and reports during this period provided insight into the services accessed by the cohort and the conditions of the residential centres in which they lived.

Roger West’s (1996) independent report on Peat Island was critical of the centre’s operation and called for its closure. As he explained in interview: “The system was designed around the institution and the needs of the staff”. The report also investigated allegations of “client assaults” and breaches of disciplinary practices in “staff responses to alleged sexual assaults” (West, 1996, pp. 9-10). As a result, staff members were subject to an internal departmental investigation. This included Bob Williams, who recalled at interview that this had been an extremely stressful time for the staff (see also Ellmoos, 2010a, p. 86). According to Mitchell (2018):

the community was disturbed by these reports and the parents of the residents even more so. The whole climate about the centre was changed irrevocably (p. 183).

The following year, the Performance Audit Report: Large Residential Centres for People with a Disability in New South Wales (NSW Audit Office, 1997, p. ii) (Audit Report) assessed the provision of residential services for people with an intellectual disability in seven government institutions and three non-government institutions in NSW. The former comprised those that provided services which “were not in conformity with … the Disability Services Act 1993 (NSW) and had not received funding to implement transition plans” (p. ii). Stockton was audited but Peat Island was not, as it had received transition funding towards its compliance with the Disability Services Act 1993 (NSW).

The Audit Report focussed on ten practice areas considered critical to protecting the legal and human rights, safety and dignity of residents and assessed institutional policies and practices in institutions against these criteria, such as compliance with implementation of individual service plans. It found “significant differences in how government centres had approached and progressed the implementation of these policies and the degree of practice compliance with policy directions” (p. iv), although it conceded that there were inherent “structural limitations in institutional settings which prevent the successful implementation of all Department of Community Services’ policies” (p. iv). At Stockton, widespread discrepancies were reported in

206 relation to expenditure per resident, resulting in inequities “for residents because of the differing levels and variety of services an institution is able to provide” (p. 73).

Over a decade later a report by the NSW Ombudsman (2010) noted:

Numerous reports and inquiries have found that residential centres in NSW do not fully confirm to the Disability Services Act and are incapable of doing so. This is because the nature of institutional care – including the segregation of the centres from the broader community, and the structured and inflexible routines – restrict the rights and opportunities of the people with disabilities who live in these settings ( p. 1).

The Ombudsman’s report also found that the anticipated closure of residential centres as part of ADHC’s devolution policies had not been fully implemented. Although Peat Island had closed in 2010, Stockton was still fully operational.

In 2012 ADHC contracted the University of NSW’s Social Policy Research Centre to undertake a review of the closure of three residential centres (Grosvenor, Peat Island and Lachlan Centre) and the four new accommodation settings that had replaced them, including two facilities to which the cohort from Peat Island had been relocated—Casuarina Grove in Hamlyn Terrace and Fig Close in Wadalba. The review (Fisher et al., 2013) included an assessment of service delivery, sustainability, governance, change management, risk management, affordability and value for money; stakeholder satisfaction, and quality of life. The study found “that people living at all sites, except Casuarina Grove, experienced increased quality of life” (Fisher et al., 2013, p. 9).

The main impact of these administrative changes on the everyday lives of the cohort as they aged reflected the shift from a medical or health model to a social and community model of care. The main themes are discussed in detail in the following section.

8.2 Impact on Residential Centres

The cohort’s retirement years coincided with the winding down of Stockton and Peat Island. When Peat Island closed in 2010, most residents were transferred to a new purpose-built ADHC aged care facility for people with intellectual disability called Casuarina Grove at Hamlyn Terrace on NSW’s central coast.

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The gradual decline in population at Peat Island and Stockton was in keeping with the NSW Government’s 1998 undertaking that all residential centres in NSW would be closed, with no further admissions after 2002 unless in exceptional circumstances and with approval from the Director-General of Health (Fisher et al., 2013, p. 21). In 2011, a further government commitment was made to close all residential centres by 2017/18. This was supported by $255.4 million in capital and recurrent funding to facilitate transition to suitable new accommodation (NSW Government, 2011, p. 25). During the 1990s and 2000s, the two residential centres, which were operating under an outdated model, were required to develop “transition plans” to comply with the Disability Services Act 1993 (NSW). There was constant discussion and work towards the pending closures, which impacted the staff and likely affected the quality of life of the cohort.

The policy of devolution and ultimate closure of the residential centres was articulated in two documents—Stronger Together 1 and Stronger Together 2 (NSW Government, 2006, 2011). The position was consistent with other international and federal policy directions, as discussed earlier. The existence of the residential centres was seen as contrary to international covenants, such as the Convention on the Rights of Persons with Disabilities, and to the principles of person-centred planning (which was a key policy commitment under Stronger Together 1 and Stronger Together 2). Accommodation was to be more home-like and provide opportunity for residents to interact with the public. The existing residential centres could not meet these benchmarks.

This period also witnessed a shift from engagement in paid work in sheltered workshops to engagement in group day programs and activities either onsite or in the community. The introduction of individual plans for every client, also discussed in detail later in the chapter, provided opportunity for more personalised services and choices.

8.2.1 Stockton

Stockton’s patient population was downsized during this period. Although Stockton was targeted for closure under Stronger Together 2 (2011), it remains open today as the only large residential centre in NSW. According to my interviews with Stockton nurses Forbes and Kelly and media reports (Tonkin, 2018), it has functioned in recent years with a skeleton staff and outdated amenities as it waits for the last of its residents to move into group homes.

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In 1987 there were 537 patients at Stockton, 61 of whom were under the age of 19 (Ellmoos, 2010b). The population was ageing, although not to the same extent as the population at Peat Island. In 1993, the 580 residents at Stockton accounted for 30% of the state’s residential centre population of 1,946 (NSW DOCS, 1993, p.35). In 1996 there were 480 permanent residents and 16 persons in respite care. The majority of residents were noted as having severe intellectual disability and 40% as having physical disability and challenging behaviours (Ellmoos, 2010b). By 2010 the number of residents had declined somewhat to 413 (Ellmoos, 2010b) and had apparently declined further to about 250 in 2019 (Forbes, 2019).

During this era the physical structures at Stockton remained largely unchanged, with investment on the site likely impacted by the prospect of closure. Some accommodation was renovated to allow for more independent living. In 1996, 15 residential units accommodated between 12 and 39 people and a number of smaller cottages housed up to eight persons (Annual Report, NSW DOCS, 1995/1996; Ellmoos, 2010b). By 2000, it was reported that “30 people have small group apartment accommodation at Stockton” (NSW DOCS, 1999/2000, p. 53).

8.2.2 Peat Island

Upon transfer to the Department of Family and Community Services in 1989, Peat Island Hospital was renamed Peat Island Centre (Ellmoos, 2018a). During the cohort’s retirement years in the 1990s, Peat Island was the subject of several negative inquiries which, coming on the back of numerous reports calling for its closure in the 1980s, affected staff morale. Further downsizing occurred in the 2000s in preparation for the eventual closure of the site in 2010. The cohort and many of the staff were ageing and approaching retirement.

In 1991, 130 persons were living at Peat Island, of whom 16% were female (Ellmoos, 2010a, p. 84). By 2006 only 90 remained, aged 43-88 years. The primary support needs of the population were reported as “health” and “ageing”. When Peat Island closed in 2010, its patient population was 79 (Fisher et al., 2013, p. 22). The extent of family involvement in residents’ lives ranged from frequent (45%) or intermittent (36%) to rare (8) or none (2%); 9% was unknown (Fisher et al., 2013, p. 23).

By 1991 one-third of the 130 residents were living in “normal houses” that provided a more homely atmosphere (Ellmoos, 2010a, p. 84). Men and women lived together and some had

209 house pets. During this period the accommodation was renovated and amenities were updated to facilitate more personalised arrangements (Williams, cited in Andersen, 2009). The 2000 Annual Report noted that an additional “Eight people from ‘Hawkesbury’ [accommodation] now have their own rooms in a group home style set-up” (NSW DOCS, 1999/2000, p. 53).

In 2006, when Peat Island had 100 residents (Fisher et al., 2013, p. 23), Gowlland moved into accommodation there, an eight bedroom villa, ‘Rizkalla’, with another man and six women. His family reported that this was the first time his room had been personalised with his belongings and family photos on display. They described the nurse unit manager as a warm and nurturing woman. Gowlland’s disposition during these years mellowed and it is likely his living environment played a role. Over the course of their lives at Peat Island, McLachlan and Gowlland lived in numerous different facilities across Peat Island, with accommodation being assigned according to age, temperament, physical disability and gender.

The administration of Peat Island during the 1990s through to its closure was led by nurses, whose appointments were informed by the outcomes of various government reviews and inquiries and were intended to secure a change in organisational culture. There was often tension between the Island’s new leadership and the existing non-executive staff, which likely affected the everyday lives of residents. In addition, the executive played a pivotal role in the implementation of policies and programs on the Island.

In 1989, Administrator Bruce Green was appointed as the CEO to the Island, assisted by Teri Golding as the Director of Nursing. Eric Holtmann then became the new Director of Nursing in 1991 and emphasised his commitment to choice and opportunity for clients (Ellmoos, 2010a, p. 84). However, Holtmann (and several other nurses) were later embroiled in an official complaint to the Department regarding mistreatment of residents by staff and other patients (Mitchell, 2018, pp. 177-181). This was the subject of Roger West’s 1996 independent inquiry, which is discussed later in this chapter. The staff at Peat Island in the early 1990s comprised 85 nurses, support staff, a psychologist and a doctor (Ellmoos, 2010a). With the resident population numbering 130 and declining, this was a period of favourable staff to client ratios (interview with Williams).

Colleen Jupp, a retired Regional Manager from ADHC, was the Director of Nursing through most of the 1990s. Although her appointment was intended to bring stability to a

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workforce that had been affected by the ongoing reviews and industrial issues (Ellmoos, 2010a), Jupp was also a divisive figure whose commitment to a client-focused and change-oriented approach alienated some staff (Andersen, 2009; interview with Williams 2018; Mitchell, 2018, p.185). Jupp was the Director at Peat Island during West’s inquiry (Mitchell, 2018, p.183).

Deidre Russell was the Nurse Manager for Peat Island from 2004-2009. During her interview for this project, she recalled the antiquated practices in place when she arrived: “I thought that I had gone back to the dark ages”. She also described staff divisions between those who were client-focused and those who wanted to maintain the status quo and the existing industrial conditions.

Bob Williams, who features heavily as an interviewee throughout this chapter, replaced Russell as the Nurse Unit Manager in 2009 and continued in that role until the closure of Peat Island in 2010, when it had 79 residents. Of these, 54 elderly and physically disabled residents moved to Casuarina Grove, 16 persons moved to Wadalba based on younger age, greater mobility and the nature of their disability, five moved to another residential centre, three moved to group homes, and one moved back to live with family (Fisher et al., p. 24).

The closure of Peat Island was met with some resistance from staff and family:

Staff have also queried the need for change, and have questioned the statement that Peat Island is an isolated location. They have also suggested that it is not in the best interests of the current residents to move to a new model when they have lived in Peat Island for the majority of their lives (Fisher et al., 2013, p. 53).

Subsequently, a Departmental change management process was implemented to help ease the tensions. Families were concerned about where their family member would end up. Glenda Miller, McLachlan’s niece and person responsible, recalled her concern:

I went to as many meetings as possible about the closure of Peat Island … We asked if families were allowed to be involved. I was told that I didn’t have a say about where Richard was going to move to. I didn’t want Richard to move to an NGO.

Both Miller and Nurse Mcguiness separately recalled in interview that McLachlan was opposed to leaving Peat Island. According to Miller, “Richard refused to go”. Indeed, when I visited Casuarina Grove, McLachlan grinned as Mcguiness playfully told him the story of his refusal to leave Peat Island and the steps she had to take to obtain his agreement.

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8.2.3 Casuarina Grove

McLachlan and Gowlland both lived at Casuarina Grove, which opened in 2010 to provide permanent accommodation for NSW residents with a disability. The building has 10 units, each with ten beds; the units are connected via a shared corridor and amenities; and one unit operates as a respite service for the Hunter Region. The following information is drawn from an independent report undertaken by Fisher et al. (2013).

The purpose of Casuarina Grove was to “move from the medical institutional model to a person-centred aged care model with the introduction of non-nursing staff for personal care and individual planning, addressing medical needs and developing health care plans by nursing staff” (27). The residents were reported to have more privacy and a higher standard of living. Some age-appropriate day activities and diversional therapy were offered on site, higher staffing ratios meant improved quality of specialist support, and there was some team work between community-based and nursing staff. However, the report found that “many people at Casuarina Grove have experienced an overall decrease in domains of participation and social relationships (p. 39), including reduced access to and links with the local community (p. 27), partly because of its isolated location adjacent to the busy Pacific Highway. There are no other facilities, such as shops, cafes or clubs, nearby and most residents are not able to leave the property unaccompanied. In contrast to the space at Peat Island, where clients could walk freely, Casuarina Grove is on a relatively small block of land with little grassed space.

According to the authors of the review, “most people” were pleased with their new home, although the majority of staff surveyed were unhappy with the move, and industrial issues caused tensions (p. 61). Some managers were disappointed with some aspects, such as the use of ‘cook and chill’ meals, which meant full meals could not be prepared on site with or for the clients.

Some concern was also expressed about the speed with which the move was implemented. As previously discussed, McLachlan was reluctant to move from Peat Island. Overall, however, the families, including McLachlan’s and Gowlland’s, were pleased with the updated accommodation and the availability of pleasant indoor and outdoor areas to share time as a family. They appreciated the privacy afforded by a good sized bedroom with ensuite. However, Gowlland’s family was critical of the additional distance from Sydney.

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In summary, despite its location problems, Casuarina Grove represents a vast improvement on the run-down facilities at Peat Island and Stockton and has been designed to meet the needs of ageing residents.

8.3 Impact on Members of the Cohort

The introduction of the NSW Disability Services Act 1993 (NSW)—specifically, ADHC’s administrative tools such as the Disability Standards and individual plans—had a life changing impact on the cohort. Although this Act did not make direct reference to a ‘person-centred approach’ or ‘individual plans’, principles (c), (e) and (f) in Schedule 1 of this Act outline person-centred obligations for service providers. Variations of the person-centred concept were also integrated in key policies such as Standards in Action (1998, 2012) and Stronger Together I and Stronger Together 2.

Standards in Action (the Standards) prescribed practice requirements and guidelines for services funded under the Disability Services Act 1993 (NSW). The person-centred approach was most apparent in Standard 3 Individual Outcomes: “Each person is supported to exercise choice and control over the design and delivery of their supports and services” (ADHC, 2012, p. 30). According to this Standard, every ADHC client “has the right to make their own decisions and to have choices which enable them to fully participate in their community” (p. 11). The instrument for implementing this Standard was the annual individual plan.124

8.3.1 Individual plans

Individual plans provided a structure within which the client, case manager and other stakeholders could discuss and reach agreement on aligning the client’s lifestyle preferences with the service Standard objectives. The following section presents a case study of Gowlland’s experiences of person-centred planning to illustrate the impact of this new approach.

8.3.1.1 Case study: Gowlland

Gowlland’s administrative files 1989-2012 document the individual planning process and shed light on its impact on Gowlland and his family. The planning templates varied over time.

124 Individual planning was first discussed in the Department’s Annual Report for 1995-1996 (NSW Department of Community Services, 1996 p 44-45, 48, 51), referring to implementation of the first version of the Department’s operational manual: Policies for Working with People with Disabilities. Also see ADD, Annual Report, 1996.

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The first plan retained on his file (for 1993) used a formal template with several headings (service and lifestyle objectives, future objectives, method, training setting, client needs) and checklists, including the individuals who should be informed of the individual plan (person responsible, employer, medical practitioner, recreation officer, and residential care official). Signatures were required from the client, the case manager, and the chairperson of the meeting. Those invited to attend this meeting were Gowlland (who declined to attend), Gowlland’s sister (who sent apologies), his case manager, workshop manager and a meeting chair (all in attendance). Gowlland’s plan included a detailed two-page neuropsychological and behavioural report from the Department’s psychologist and a one-page recreation report from the centre’s recreation officer. The final (hand-written) plan, which included annual outcomes, was based on these discussions.

Gowlland’s 1995 plan was a similarly detailed document covering accommodation suitability, weight control to manage diabetes (noted as meeting a Standards objective), how to minimise altercations in the workplace between Gowlland and other clients,125 key performance measures in terms of increased community access, medical appointments, eyesight testing, and dental needs. Reports from the manager of the Industrial Therapy Unit, recreation officer and medical officer were cited. There were no plans on Gowlland’s file between 1996 and 2008.

In 2009, the plan was an 11-page pro forma. It had become more sophisticated and required participants’ signatures following the meeting. Sign-off was required from the client, their person responsible, case manager, key worker and registered nurse unit manager. Service providers and the client’s weekly timetable of activities were recorded. There were ten assessment categories in these individual plans: client information, risk profile, consent, individualised plan (including lifestyle and environment review); detailed health care plan, behaviour management, ccommunication, family and friends, community access, day program, recreation, leisure and holidays, placement/accommodation, assets and finance. Gowlland’s weekly activities were noted in the 2009 plan as attending the Pillars day activities program at Peat Island on Monday-Friday from 9-12 noon.126 In addition, a two-hour one-to-one outing and

125 During this period the term “client” replaced “resident” (and, earlier, “patient”). The terminology reflects not only the new policy direction but also changing societal and community attitudes towards disability. The use of the word “individual” in international and domestic disability discourse also reflected the shift in service provision from a group to an individual focus. 126 Details about the type of activities that Pillars provided is outlined on page 219.

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a small group outing were scheduled every three weeks and every fortnight, respectively. In total, Gowlland was scheduled to leave Peat Island a minimum of three times a month. He had no holidays in 2009, even though taking a holiday was identified as a key performance measure. Analysis of these forms revealed a critical difference between the key performance measure and the outcome that was experienced by the individual.

8.3.1.2 Evaluation of the individual plan mode

There were strengths and weaknesses in the implementation of ADHC’s individual plan system for members of the cohort. The following analysis draws on Gowlland’s administrative files 1989-2012, interviews with Gowlland’s sister, Sue Andrews, and Richard McLachlan’s niece, Glenda Miller, and my personal insights from individual plan meetings I attended as Gowlland’s niece.

As is evident from the previous section, individual plans introduced accountability into the process and provided clients and their families with some choice and control over their lives and the services they needed. At first, the plans were sparse in detail and did not require input from a range of stakeholders or sign-off by the person responsible or guardian. This changed over time. From 2005, consultation and sign-off were required from the client, the person responsible or guardian, the case manager, the key worker and the registered nurse unit manager.

A positive by-product of the now mandatory inclusion of family in the annual planning process, at least for Gowlland’s family, was greater engagement on their part. The family was included in pre-meeting correspondence and discussions and the annual meeting itself. They were able to request and secure undertakings in the plan which facilitated greater involvement with Ricky, such as obtaining a carer for Ricky to enable him to have an annual weekend away with family and attend Sunday lunch at his sister’s house several times a year. The requirement for sign-off by the person responsible formalised the family’s role and contribution.

However, the success of the plan was wholly dependent on the experience and input of the parties involved. For example, the more experienced the case manager and key worker were, the more detail went into the plan and the more likely it was to be assessed against key performance indicators through the year. Tracy Wright, a former ADHC executive, recalled in interview “there were good person-centred planning examples—when staff were skilled to

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deliver it … [but some] staff struggled with person-centred planning … Their idea was that they knew the person well and wrote the plan on their behalf”.

There were also problems in the implementation of plans in the residential centres. The cumbersome institutional processes and block-funded in-house services were often unsuited to individual plans and flexibility. For example, in Gowlland’s 2009 plan, it was agreed that Ricky would visit the family home three times per year for Sunday lunch. However these lunches were sometimes cancelled if no staff member could be ‘spared’ to drive him to Sydney, since individualised funding could not be deployed to contract a suitable driver from sources other than service providers appointed under the block grant arrangements or ADHC resources. When the lunches did go ahead, other clients joined the outing to maximise the staff/client ratio. When it worked, it proved to be a wonderful experience of normal family life for all parties, including myself. Ultimately, all planning had to be within the remit of the existing block funding arrangements. It was nearly impossible to purchase or initiate any activity or service outside of these block funding arrangements, even though Gowlland had enough savings to do so.

The focus of the plan was often on what was immediately possible and on maintaining the status quo. For instance, Gowlland’s files identified his health goals as “maintaining health status by having access to appropriate services”. The pro formas had little scope for identifying the barriers, nor the alternative, to realising milestones. In the early implementation of individual plans, milestones were often explicitly linked to the six service Disability Standards. In other words, the priority was on policy alignment rather than individual needs.

Finally, from 2005 onwards, plans included a section on “Placement, Assets, Finance” where accommodation placements could be discussed. Despite the policy rhetoric about de- insitutionalisation and devolution, this option was never part of Gowlland’s “accommodation placements” discussions. In his 2009 plan, just one year before Peat Island was scheduled to close, the only two accommodation options discussed by staff were Wadalba or Casuarina Grove. Alternatives such as a nursing home or group home in Sydney closer to family were seen as unrealistic.

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8.3.2 Early retirement

As previously discussed, the early retirement of the cohort resulted from the closure of the sheltered workshops at Stockton and Peat Island because they were unable to meet the new requirements under the Disability Services Act 1986 (Cth). This had a negative impact on some in the cohort who were not ready to retire, while for others who were feeling their age, the alternative of a weekly recreational program was far more suitable.

By the time the workshops closed, the emphasis on ‘work’ (that is, attending the workshop to satisfy legislative requirements for paid employment) had changed to a focus on attending a part-time day program that reflected the individual’s capacity. Nonetheless, the cohort and staff often continued to refer to this activity as ‘going to work’.

Members of the cohort like Gowlland who, by the 1990s, were in receipt of the Disability Support Pension, were no longer required to work as had been the case for the previous SEA social security payment. At that time, workshops at the large residential centres did not align with either the Commonwealth standards or the NSW Disability Service standards. Accordingly, ADHC shifted its focus from engagement in paid work to the implementation of individualised plans that prioritised participation in daily activities inside the facility and regular engagement with the outside community. This was reflected in the absence of any substantive mentions in the relevant NSW Departmental annual reports or key policies about engagement in paid, supported or open ‘work’ in the period 1989-2013. In short, because engagement in paid work for people with disabilities was not a State responsibility, it was not a focus in service provision by the State during these years for its clients to be engaged in paid work. Rosalie Bagg, who was employed as a nurse at Stockton from 1962-2009, recalled:

The [Stockton] workshop was moved off site and that was another funding thing. Commonwealth, I think, funded industrial workshops. And they couldn’t have it being funded by the Commonwealth while it was on a State government site. So they leased property over at Mayfield somewhere. There’s always the battle about who funds what … With the Disability Service standards and that, you try to meet them all (L. Ellmoos, personal communication, May 25, 2018).

The new workshop, known as Stockton Industries, was praised as “an extremely modern, well run and efficient factory” and had been upgraded to meet strict Australian standards for

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packaging of medical and hospital supplies. However, employment services for people with a disability became a Commonwealth responsibility in 1992, and Stockton Industries subsequently closed in February 1996 (Ellmoos, 2010a, p. 112).

By 2009, only a handful of clients at Stockton were in supported employment, as Nurse Bagg recalled:

I think we’ve got about three people now that still work with House With No Steps. But I … [laughs] they keep getting kicked out I think … They were just taxied over to House With No Steps. They weren’t all that keen (L. Ellmoos, personal communication, May 25, 2018).

The focus shifted to day activities on site and in the community, such as having a meal at the local club or cafe (interview with Nurse Forbes).

The situation was somewhat different at Peat Island, where the sheltered workshop closed down around 2001. Nurse Williams reported many clients were “too old really to work or didn’t want to work” and many, including Gowlland, chose to retire. As a result, “there weren’t enough clients of a functional level left to keep the workshop functioning as a sheltered workshop and continuing to get Commonwealth funding, so it folded” (cited in Andersen, 2009). The majority of clients were redirected to day activities.127

8.3.3 Case study: Gowlland and McLachlan

Gowlland received a Disability Support Pension from at least 1992 so he was not required to engage in paid ‘work’, although he topped this up with income from contract work. In 1995, the Peat Island Industrial Therapy Unit report included in his individual service plan stated:

His work performance is also very good as long as nobody upsets him … Ricky can be very obstinate, refusing to change jobs when one contract is finished … Apart from this Ricky is very happy and content with the workshop and works well.

Gowlland is recorded as “retired” from “work” in 1999. He was 53 years old. Records from 1997 on show he had become reluctant to work, with comments such as “Has refused to

127 According to Williams, a handful of younger clients, who were not part of the cohort, were interested in and capable of work and were driven to an approved workshop in Gosford.

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attend work since 22/10/1997 reason unknown”. His disinterest and documented “run ins” with other clients indicate that he no longer enjoyed work and this, rather than the policy change, led to his retirement. As well, policy changes meant that he no longer ‘needed’ to work. During the 2000s, he commenced day activities at Pillars at Peat Island, which were similar in format to those offered at Casuarina Grove today, as elaborated below.

Prior to his retirement in the early 2000s, McLachlan had enjoyed ‘work’, according to his niece, Miller. Since moving to Casuarina Grove in 2010, McLachlan regularly walked to the onsite multi-purpose day room “with another female client that he gets on really well with” (interview with Mcguiness). Diversional activities are structured around the needs of ageing clients and are broken into 1.5 hour blocks, with two sessions in the morning and one in the afternoon. Activities include frequent movie showings, ball games, karaoke and foot and hand spa sessions. There are twice weekly opportunities for group outings and a pet therapy dog attends once a fortnight.128

McLachlan’s niece also talked about Richard’s enjoyment of other activities outside the day program, such as telephone conversations and visits with his family. He “loves the babies” (his grand nieces and nephews) and attended his niece’s wedding in Queensland in 2009. Indeed, when I interviewed McLachlan I noticed that in his neat yet personable bedroom at Casuarina Grove, he is surrounded by photos of his family. “He loves his photos”, his niece reported. During my time with him, he suggested we watch a TV series and listen to country music on his CD player, and he clearly enjoyed sharing these pleasures with me.

8.3.4 The ‘Person Responsible’

Under the Guardianship Act 1987 (NSW) (Act), there was for the first time a regulatory requirement for an ‘outsider’ to be involved in the lives of cohort members. Those living at residential centres had a ‘person responsible’ to assist with medical decision making, as the Act stipulated (Fisher et al., 2013).129 In 2006, of the 100 residents at Peat Island, 65 had a person responsible, 22 had a formal guardian under the Office of the Public Guardian, and 13 had none or their status was unknown (Fisher et al., 2013, p. 23).

128 This account is based on notes in Gowlland’s administrative files, “Diversional Activities Holiday Program”, January 2011. 129 This was confirmed by interviewees Mcguiness, Wright and O’Neill.

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The legislative requirements, if followed, had several positive impacts for the cohort. First, it could enhance decision-making in relation to medical and dental decisions. Sue Andrews, Gowlland’s person responsible, was routinely contacted by Peat Island and Casuarina Grove regarding medical appointments, changes in medication and emergency medical situations. This communication became more regular in the 2000s as the concept of the person responsible became embedded in practice. However, the outcomes depended entirely on the commitment of both the service provider (in the cohort’s case, the residential centre) and the person responsible to the decision making process. For instance, there are examples in Gowlland’s files in the 1990s of ‘rubber stamping’ by the person responsible.

Second, there was a ripple effect from the involvement of the person responsible to other areas of decision-making, which was reminiscent of the way families would be contacted when the cohort were children at Watt Street. For example, Gowlland’s files throughout the 2000s contain formal references to involving the person responsible not only in medical planning and appointments but also in his individual plan and personal financial plan. The detailed individual plan required signed consent from the person responsible from approximately 2005 onwards. Gowlland’s file held copies of his annual personal financial plans and information about the money held on his behalf with the NSW Office of Protective Commission. The one-page plans identified total expenditure from the previous year and projected income and expenditure for the forthcoming financial year, and had to be signed by the person responsible, the registered unit nurse manager and case manager.130

In interview, former Assistant Public Guardian O’Neill reported that NSW FACS staff sometimes misunderstood and overstated the legal role of the person responsible. The result was not necessarily negative, since it had the effect of strengthening the role of stakeholder consultation and engagement of next of kin, and generated more considered administrative decisions.

According to interviewees O’Neill, Andrews and Miller, some departmental staff, doctors and family also found the concepts of ‘guardianship’, ‘person responsible’ and ‘hierarchy of

130 These consents were not a requirement of the Guardianship Act 1987 (NSW) nor of the Protected Estates Act 1983 (NSW), under which the money of some clients was managed.

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decision making’ confusing at times. For example, a note in Gowlland’s administrative file from 1993 stated:

On the 27th July 1993 it was ascertained through inquiry with the Guardianship Board and Dr Chris Jones, that while Mr Gowlland has NO appointed Guardian his sister Mrs C. S. Andrews of 39 Nelson Road Lindfield 2070 is the ‘person responsible’ and can give consent for Medical/Dental treatment on Mr Gowlland’s behalf.

O’Neill observed that this confusion about the various roles and responsibilities continues to exist. When I asked Miller if she was McLachlan’s formal guardian, she was uncertain, referring to a time when her uncle required surgery: “In 2015 the surgeon called for consent —I was unsure if I was being called as the guardian or next of kin”. Her ‘lay’ understanding of the situation was that she was the next of kin to McLachlan and it was her responsibility to make the decision and give consent for the operation.

8.3.5 Health and ageing

Episodes of illness and chronic health problems were part of the cohort’s lives and were compounded by the effects of the ageing process. At the same time, their peers, siblings and care staff were also ageing and some were dying.

The public hospital system often struggled to respond to persons with intellectual disability presenting in a health crisis. This was especially so for Gowlland and McLachlan who presented to hospital with increasing regularity as they aged. These emergency hospital interactions were largely negative experiences. Many doctors, nurses and relatives found it difficult to assess the pros and cons of invasive surgery and slow recovery versus maximising the individual’s current quality of life. Miller explained that her uncle “had a high prostate level in 2013 and went to see a specialist and felt that she was clear about how intrusive the operation is … So we didn’t do the operation”.

Nurse Mcguiness, who advocated for her clients, including McLachlan and Gowlland, shared in interview some of her frustrating experiences with medical professionals in emergency departments who, she found, were generally “very quick to ask for Advance Care Plans”. What this meant was they wanted to know if a ‘Do not resuscitate’ directive or similar was in place.

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In NSW, an Advance Care Directive (ACD) “is a way to say what healthcare treatments you would like to have or refuse, should you be in a position where you are seriously ill or injured and unable to make or communicate decision about your care and treatment” (NSW Health, 2019, p. 1). An ACD can only be made by an adult with decision-making capacity—in the case of the cohort, this was the legal guardian or person responsible. It is considered a legally binding document and nominates who will make medical decisions, should the person be incapable of doing so. Gowlland did not have an ACD, but the issue of resuscitation was discussed in his annual individual plan from 2004 onwards. Initially, non-resuscitation was considered to be premature and contrary to Gowlland’s wishes. By 2011, however, non- resuscitation was agreed due to his declining health and mobility, although such matters were never directly discussed with Gowlland.

Gowlland’s files contain numerous entries about his hernia problem, beginning in 1960. The administrative entries detail the surgeries he underwent, and nurses’ entries discuss the treatment of his surgical wounds and the need for further medical appointments to deal with ongoing problems. The entries became more frequent in his later life, although this may reflect policy and legal requirements for documentation from the 1990s rather than change in his condition.

Dr Caspersonn, Gowlland’s surgeon, wrote in correspondence to Peat Island on 28/09/1992:

Thank you for referring John Gowlland who has a persisting sinus towards the lower end of a laparotomy wound, following the over sewing of a bleeding peptic ulcer at Hornsby Hospital in December, 1981. Prior to this I note that Mr. Gowlland had had a previous laparotomy and subsequent to this repair of incisional hernia. … On examination there was a chronically discharging sinus towards the lower end of an upper midline wound. …It would seem reasonable that it be explored as there must be a foreign body present, presumably unabsorbed suture material.

There was no discussion in the file of the potential for a medical negligence complaint in relation to the presence of a “foreign body”. The majority of file entries are from the nurses who tended to the wound with cleansing and topical treatment.

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Several pieces of correspondence to Peat Island from Dr Caspersonn were received and filed in the early 1990s, indicating that authorities were careful to comply with the requirement under the Guardianship Act for formal consent to be obtained from Gowlland’s person responsible each time an operation was undertaken.

Older adults with or without an intellectual disability face the prospect of life-limiting diseases such as cancer and/or progressive disability. However, the early signs of disease for persons with intellectual disability “can go undetected for a number of reasons, such as lack of recognition of symptoms or lack of understanding that the symptoms are a concern by the adult; underreporting of health problems; or different presentation of illness as is common in older adults” (Hahn et al., 2016, p. 161). As well, there is often a misperception that people with intellectual disability do not feel pain or need the same level of care. Miller recalled in interview a serious fall sustained by McLachlan in 2015:

He was in the bathroom [at Casuarina Grove]. He basically furniture-hopped into the bathroom and he fell. He went to the GP and then was sent for X rays to Wyong Hospital. He had broken his C4.

Once they established that he had broken his neck, she continued, he was transferred to Royal North Shore Hospital (RNHS) in Sydney for “emergency surgery for his neck”. McLachlan had the operation on Friday and, when Miller saw him, on the following Monday, he was immobile in his hospital bed with a “no call button” and was being prescribed “nothing more than Panadol” for pain relief. Miller, herself a trained nurse, questioned the pain management regimen and lack of nursing attention: “RNSH was a disgrace”.

In other instances, the public hospital system under-estimated the patient’s ability to recover from illness, as Nurse Mcguiness explained:

Doctors quite often don’t see it as an episode. Rather, they see it is how the person permanently is … They think that’s their life and that it’s all it ever has been.

A number of Gowlland’s experiences are illustrative. In 2005, he was admitted to hospital due to a urinary tract infection that caused his heart to fibrillate. The doctor overseeing Gowlland’s care called the person responsible and asked if the family wanted to activate a not- for-resuscitation directive. Gowlland’s family viewed this question as inappropriate, since he had a urinary tract infection for which immediate attention should have been the priority. He

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was also only 59 years of age. He had been placed on a mattress on the floor because of the hospital’s concern that he might fall out of bed. Following his recovery several days later, many of the hospital staff were surprised to see that he could walk and talk.

On occasion it seemed that the hospital’s recommendations seemed premature and not focused on the patient’s quality of life. For example, in 2008 Gowlland was admitted to Gosford Hospital with pulmonary pneumonia. He was also diagnosed with dysphagia (inability to swallow). At a round table meeting with his family, a group comprising a senior nurse from Peat Island, the doctor, the hospital’s social worker and occupational therapist recommended that a percutaneous endoscopic gastrostomy (PEG) procedure be performed because they believed that his weak swallowing ability presented a choking hazard.

Gowlland’s family and Peat Island representative staff opposed the hospital’s recommendation as premature, arguing that it was worth persevering with regular soft food feeding to give his body and oesophageal muscles a chance to regain strength. Gowlland enjoyed food and eating, and the PEG feed would stop the conventional eating process. This view was backed by Bob Williams, who was the Manager at Peat Island at the time. The general hospital did not share this view. Their position was that their staff had neither the skills nor the time to feed Gowlland and they did not want to expose the staff to the risk he might choke. To their credit, his family and the nursing staff from Peat Island travelled to Gosford Hospital in rotating shifts to feed Gowlland with pureed food until he was well enough to be discharged. Gowlland went on to have a full recovery and continued to feed himself (with soft food) until he died in 2012.

This incident illustrates the tensions for mainstream hospitals in their treatment of persons with intellectual disability and the cultural differences in nursing practice between them and their nursing counterparts on Peat Island.

8.3.6 End of life

This section draws on analysis of Gowlland’s files, interviews with McLachlan’s family and Nurse Mcguiness’s reflections to explore how the end of life was experienced by peers and members of the cohort and their families. The term “end of life” refers to the range of issues around dying, death, post-death rituals, remembrance and bereavement (Stancliffe, Wiese &

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Read, 2017, p. 979). The individual plan was the reference point for consideration of all end-of- life issues. As previously noted, formal administrative documents such as ACDs were discussed at plan meetings for Gowlland and McLachlan, as well as family preferences in relation to managing acute illness and death. For example, Miller, as Richard’s person responsible, has already thought about the arrangements for the latter: “The burial of Richard, he is going to be buried with his mother. Richard’s funeral is organised”. When the cohort lived at Peat Island, most funerals were held at the Peat Island Chapel or in wards to ensure accessibility and maximise peer participation (Andersen 2009; interview with Mcguiness). A local priest or minister officiated. Occasionally, families requested that the funeral be held at their local church. The downside of this was that a smaller number of the cohort could attend.

End of life at the residential centre was dealt with openly, honestly and with ritual. For example, Sid Harrison, who was a peer of Gowlland and McLachlan at Peat Island, used to take responsibility for making a crucifix out of sticks for each funeral, which he offered to the person’s family if they were present.

Official responses to the death of a family member were in stark contrast. For the cohort, the matter was minimally discussed at the point of notification or during bereavement. Gowlland did not attend the funerals of his father or mother, who died in 1987 and 1989, respectively. The first and only reference in his files to the death of his mother was made two months after the fact, and comprised a letter from his sister, Sue Andrews, regarding compliance with the Disability Services and Guardianship Act and the transfer of person responsible status from Ricky’s mother to herself. This suggests that the exercise of parens patriae took priority over addressing any bereavement-related issues.

McLachlan’s story is one of broken connections and reconnection with family. McLachlan had lost both his parents to tuberculosis by the time he was two years old. After his admission to Watt Street in 1952, he had no contact with his family until 1994—which Miller refers to as “the year we found Richard”—after Richard’s father, Henry Miller, had looked for him via the Salvation Army’s missing persons’ service. The family reconnected at Peat Island over a family picnic. When Henry Miller died in 2002, his daughter fondly recalls: “Dad and Richard had had eight years together”.

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Ricky Gowlland died in his own bed at Casuarina Grove on the night of 16-17 April 2012. He had not been ill or unwell immediately prior to his death, but his overall health had been in decline in the years and months before. His death, whilst an immediate shock, was not a surprise. His family saw this as “the perfect way to pass away”— not in a hospital but in his ‘home’, surrounded by his sister’s paintings, family photos and, beyond his room, the staff and peers he had known for decades.

Management of the immediate circumstances of the death of a client at Peat Island or Casuarina Grove was an administrative and procedurally driven affair. When a person with intellectual disability dies in a NSW residential care centre, a number of statutory procedures have to be observed before the body can be released to the person responsible or guardian. Once Casuarina Grove staff established that Gowlland had passed away, his body was taken to the local public hospital, stored in its morgue, and then transferred to the Coroner’s Office in Newcastle for a post mortem and issuing of a death certificate.131 Despite the family’s request, they were not allowed to see his body or sit with him until the Coroner had identified the cause of death and issued the death certificate.

Once Gowlland’s body had been transferred to the Newcastle Office of the Coroner, their staff contacted the family in relation to the necessary procedures. The staff were sensitive and kind. The Coroner’s Office made a preliminary diagnosis of cause of death as pulmonary aspiration based on assessment of the body and medical notes. They gave us the choice of a more thorough post mortem, but we declined on the grounds that he had had enough medical interventions throughout this life. The Coroner’s Office agreed. Once the Coroner had formally identified cause of death and issued a death certificate, the body was released six days after his death to a local funeral home near Casuarina Grove, where his family could finally see him laid out in private. Two days later his funeral was held.

As this account shows, even in Gowlland’s final days there was tension between the legal doctrine of parens patriae and the normal family rituals of grieving. For his family, it was culturally appropriate to sit with the person’s body as soon as the death was known. However,

131 This is the legislated protocol for people with disability living in out-of-homecare in NSW. See Coroners Act 2009 (NSW).

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statutory requirements132 prevented this, since the circumstances and cause of death had first to be formally established via a post mortem. This was in stark contrast to the practice surrounding the deaths of three children at Watt Street in the early 1950s where, as described in Chapter 5, parents’ requests for information about the post mortem results went unanswered and it may well be that no post mortems were conducted.

Gowlland’s funeral was an example of an ‘accessible funeral’. It was in keeping with his family’s Anglican traditions and was held at Casuarina Grove on a weekday morning so his peers and carers could attend. An Anglican minister associated with the family oversaw the religious proceedings and hymns. Eulogies were given by family and staff. None of Gowlland’s peers spoke, although some may have liked to. There was music, and those present were served cups of tea, sandwiches, freshly baked goods and fruit. Gowlland’s peers, led by ‘stick man’ Sid Harrison, ushered his coffin to the hearse, which they escorted through the grounds to exit to the main road.

At the end of the funeral, the family were invited to Gowlland’s room and together with staff packed his remaining belongings. It was a comforting process, and staff went out of their way to honour his life and the contribution he had made to Peat Island and Casuarina Grove. Finally, the staff handed over a memory book and photo disk of Ricky’s recent years.

8.4 Conclusion

During the final stage of their lives, the surviving cohort members were treated, at an administrative level, more as individuals and less as a collective. This phase was positively impacted by the recognition of their human rights to individual choice and control. Legislation such as the Disability Services Act 1993 (NSW) and its associated person-centred policies, including individual plans, sought to identify the cohort’s individual needs and preferences. The introduction of the Guardianship Act 1988 (NSW) and the role of person responsible strengthened these aspects of administrative decision-making although, as this chapter has shown, these ideals were not always realised in practice.

132 Chapter 4, Reporting of deaths, Coroners Act 2009 (NSW).

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Members of the cohort faced other challenges as they aged. They had to retire early due to the closure of Commonwealth-approved sheltered workshops at their facilities. Their lives were reconstructed around day activity programs onsite and visits in the community, which was not necessarily perceived negatively. In addition, health issues began to dominate their lives, with emergency admissions to hospital becoming more frequent and sometimes administratively fraught. These short- and long-term interactions with public hospitals were largely negative experiences for the cohort. Finally, and somewhat ironically, the end-of-life experience was positively and sensitively managed by the residential centres.

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Chapter 9: Institutional Abuse

This theme emerged from interviews with nurses from the hospitals where the cohort lived, analysis of Gowlland’s administrative files, historical research about abuse at Peat and Milson Islands (Ellmoos, 2010b; Mitchell, 2018); and the autobiography of Bourke Gibbons, which indicated that abuse was an issue for the teenage cohort at Peat and Milson Island (Wood, 2007). Other sources included independent reports regarding quality of patient care and neglect at Stockton (Subnormal Children's Welfare Association, 1981) and independent NSW government reports (Ministerial Advisory Committee, 1987; Ombudsman of New South Wales, 1983; Richmond, 1983). “Experiences of abuse” was also one of the seven themes identified in the international systematic literature review (Chapter 2).

‘Institutional abuse’ refers to instances of person(s) to person(s) abuse occurring in an institutional setting. It includes any non-accidental behaviours and actions by staff, peers or others associated with the institution that entail a substantial risk of causing physical, emotional or sexual harm. It was not a ‘noisy’ finding, but was rather subtly evident in each of the cohort’s life stages. Interviews with nurses who began training in the late 1960s and early 1970s revealed that many had witnessed instances of institutional abuse, mostly in the early stages of their careers.133 Incidents involved one-off or infrequent events of older and more experienced staff using restrictive nursing practices on patients, and in some cases staff-to-patient physical abuse. As Gowlland’s files attest, incidents of physical patient-to-patient abuse also occurred. From the mid-1980s, formal administrative requirements mandated reporting of incidents of sexual and/or physical abuse, including notifying the police, but it appears that most of these reports went no further within or beyond the hospitals.

9.1 Administrative Frameworks and Abuse

During the childhood, teenage and early adult years of the cohort, there were no administrative requirements for reporting and responding to incidents of abuse. Thus, this finding suggests that an absence of administrative structures was responsible for the paucity of

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recorded instances. There were a few records. For instance, when Gowlland, then aged 13, fractured his arm in an altercation with a peer in 1960 at Watt Street, this was documented on his file along with a copy of the medical superintendent’s letter to Gowlland’s parents about the event, medical treatment and outcome. There is no subsequent record of physical altercations in his files until the late 1970s, when templates for recording such incidents were introduced.134

From 1986- 1996, Gowlland’s files contain numerous entries on the formal departmental “Accident Report Form – Peat Island Hospital Health Commission of New South Wales” and its variations recording physical altercations between Gowlland and other named male ‘clients’. At this time a number of independent NSW government reports described the poor conditions at Peat Island (e.g. Ministerial Advisory Committee, 1987; Ombudsman of New South Wales, 1983; Richmond, 1983); the Ombudsman’s Report on Ian Osborn’s loss of all ten fingernails at Peat Island recommending the need for improved reporting.

9.2 Case study: Cohort member Paul

In order to understand the impact of living in an institutional environment and the ‘knock on’ effect this had on patient behaviour, it is necessary to carefully consider the individual’s character and behaviours and assess the institutional responses to people with challenging behaviours over time. This is a complex task.

Paul’s files from Milson Island and Callan Park (De-identified 1, 2018) contain reports that could be interpreted as punitive institutional responses for non-compliance or anti-social behaviour. Interviewees told me that Paul’s administrative file stated that he was kept “on a lead” at Milson Island and, at Callan Park in the 1970s, he was tied to the wire fence in the airing yard during the day. It is unclear if Paul’s behaviours arose from everyday institutional regimes or whether the institution’s abusive response to him led to increased behavioural problems thought to ‘warrant’ such draconian management, or both.135 It appears that Paul’s experiences were not unique. He was one of a group of around a dozen men who had been transferred from Milson Island to Callan Park Mental Hospital after Milson Island closed. An interview with

134 An “Accident Report Form – Peat Island Hospital Health Commission of New South Wales” is entered into Gowlland’s file in 1977. The form details Gowlland’s receipt of a fractured nose in an incident involving another patient. 135 In Paul’s 1952 admission schedule under the Lunacy Act 1898 (NSW), he is described thus: “He is very spiteful, will kick, bite and bumps his head against the wall and throws himself down in rage”.

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another nurse (De-identified 2), who was responsible for integrating a group of men transferred to Morisset Mental Hospital after Milson Island closed in 1972, spoke of their challenging, anti- social behaviours, disorganisation and inability to perform basic self-care.136 These skills had to be taught.

9.3 Restrictive nursing practices

Examples of restrictive nursing practices137 were mentioned at interview by the nurses who worked at Stockton, in particular regarding the 1960s. These included use of restraint vests, lockdown of wards, and tying patients into bed at night with their sheets. Gibbons recalled nurses putting patients into isolation rooms at both Milson and Peat Islands during the late 1950s and early 1960s (Wood, 2007).

Many nurses described practices that would be considered examples of institutional abuse by today’s standards. For example, in Bourke Gibbon’s biography about his life as a teenager at Peat and Milson Islands in the late 1950s-early 1960s, he described the cold temperatures and lack of warm bedding and adequate clothing that likely resulted in his peers experiencing “hypothermia”. As well, he was given cold showers in the winter during which a nurse would place his naked paraplegic body on the concrete bathroom floor and ‘shower’ him with cold water from a hose (Wood, 2007, pp. 59, 67). Other examples of abusive nursing practices detailed in some interviews included: physical punishment and physical assaults on patients, watching patients have sex or masturbating, emotional abuse (ignoring and neglecting patients, taunting and verbally abusing them), over-prescription of sedatives, and unqualified staff performing medical procedures such as injections of psychotropic medications.

136 “I was working in the Unit where people who had come from Milson Island. They ate and swallowed everything. They ate chairs, TV, grass, worms, ate faeces. Their faeces were all full of worms … The boys [from Milson Island] were totally disorganised. Totally disorganised. They ate everything. It took two years to settle down the men. To integrate them.” Interview with De-identified 2. 137 As defined by the Australian Law Reform Commission in 2014: “Restrictive practices involve the use of interventions and practices that have the effect of restricting the rights or freedom of movement of a person with disability. These primarily include restraint (chemical, mechanical, social or physical) and seclusion. People with disability who display ‘challenging behaviour’ or ‘behaviours of concern’ may be subjected to restrictive practices in a variety of contexts, including: supported accommodation and group homes; residential aged care facilities; mental health facilities; hospitals; prisons; and schools” (2014, p. 196).

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There was also emotional abuse by staff in the form of verbal abuse and neglect. Nurse Davis recalled that the most frequent form of emotional abuse was silence: “There was neglect— not talking to the client”.

Staff also inflicted punishment by, for instance, withholding food, providing poor quality food, feeding so quickly that the patient was unable to eat properly, or smacking patients for taking food. The patients most often subjected to this were those who spoke up: “The people who spoke up, who were defiant, they were punished” (De-identified 3, 2018). Staff also punished patients when they did the “wrong thing”. The same nurse recalled: “Norma would always steal food, so she was fed the slops [other patients’ leftovers]. Norma wore a restraint [vest]”.

9.4 Sexual abuse by staff

Interviewees rarely made allegations of sexual abuse. When they did so, the report typically involved an incident about which an allegation had been made about another staff member who left the hospital soon after.

Bourke Gibbons’s autobiography offers valuable insight into the cohort’s likely experiences during their teenage years at Peat and Milson Islands (Wood, 2007). Gibbons was the same age as the cohort, and he mostly lived in the ‘wheelchair dorm’ at Peat Island, except for the two years he spent on Milson Island. Whilst at Peat Island Gibbons witnessed prolific sexual abuse of vulnerable teenage patients by a male staff member, ‘Bill’; other instances of staff sexually molesting patients; peer-to-peer sexual abuse by ‘moles’; and neglect via ignoring patients (Wood, 2007).

Bill would rape a patient pretty well every second day, sometimes in the yard, sometimes out of sight around the corner, sometimes in the bathroom and often when he was on night shift, he would attack a patient in his dormitory bed. When Bill was on night shift, Bourke always made sure he went to sleep on his side with his back pressed hard up against the wall. (Wood, 2007, pp. 68-69)

9.5 Peer-to-peer abuse

Nurses recognised peer-to-peer abuse between patients, including physical, verbal and sexual assault. Physical abuse was the most common form cited in Gowlland’s files.

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Nurses said they witnessed and were aware of consenting and non-consenting sexual acts between adult patients and between adult and child patients. Interviewee Nurse Grahame Davis recalls at Stockton in the 1970s: “There were sexually inappropriate behaviours. Bed hopping. You would turn a blind eye to it if it was mutual”. In other words, ‘consent’ was based on nurses’ perceptions of the behaviour.

9.6 Evidence from the literature

Experiences of institutional abuse were reported by subjects in all eight research articles (Brown et al., 2009; Hallrup, 2012; Hamilton & Atkinson, 2009; Hreinsdottir & Stefansdottir, 2010; Hreinsdottir et al., 2006; Lynn & Nowicka, 2008; Roberts & Hamilton, 2010; Traustadottir, 2006). Residents reported experiencing the following categories of abuse, in order of prevalence: excessive punishment by staff, emotional abuse, physical abuse, sexual abuse, peer to peer abuse, and other forms of neglect (such as emotional neglect).

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Chapter 10: Discussion

This thesis addressed the following research questions:

RQ 1: Why were children with intellectual disability admitted to Watt Street and by what administrative mechanisms?

RQ 2: What was the impact of administrative frameworks on the children’s lives over their life course?

The previous chapters have presented the results of analyses of data across the key stages of the cohort’s lives. This chapter builds on these findings by examining the data as a whole using the three stage analytic technique of Mays, Pope and Popay (2005) employed in Chapter 2. The aim was to generate a more holistic understanding of the findings in relation to the impact on the cohort of the changes in policy and administrative frameworks over time.

Table 10.1 depicts the three stages of analysis. The first column summarises key findings from Chapters 5-9. In the second column, these findings are grouped into categories such as work or education. The material in the third column was generated by asking questions of the categorical findings: Why did this outcome occur? What factors contributed to this outcome? What alternative explanations are reasonable? The answers to these questions are expressed as seven dominant themes that emerged across the data. These are listed below and elaborated in the following sections:

• Administrative frameworks set the course of the cohort’s lives. • Chronic, episodic and intermittent health issues were a reality throughout the cohort’s lives. For many this was the primary reason for admission (RQ 1) and the issues were ongoing (RQ2). • The state expected co-contributions from families and auxiliaries and these benefitted the cohort throughout their lives (RQ 2). • The introduction of social welfare payments and obligations resulted in meaningful improvements in the cohort’s physical environment and quality of life (RQ 2).

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• Relationships with family, staff and peers varied over time and were influenced by administrative frameworks (RQ 1 and 2). • The nature of institutional life was and remains inherently regimented, which is at odds with recent policies and practices of de-institutionalisation (RQ 2). • Cases of institutional abuse were reported. This reflects the absence of appropriate administrative frameworks.

As indicated, six of these themes address Research Questions 1 and/or 2. The final theme —institutional abuse—cross-cut the stages of the cohort’s lives and can be seen to have an inverse relationship to Research Question 2, as abuse occurred in the absence of specific NSW policies regarding prevention of and response to incidents of abuse until the mid-1980s.

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Table 10.1 Three-stage Whole-of-data Analysis

Third order interpretations: Chapter First order findings Second order categories Common themes

Importance of work/training Administrative frameworks set the (Chapters 2, 6, 7). Program offerings course of the cohort’s lives. 2: First-person Institutional life: an unnatural construct. expanded to include recreational accounts of activities, industrial therapy, Positives: SEA, Invalid Pension, DSA institutional life education and, for some teens, work NSW (service standards and Institutionalisation challenges individual at the hospital. Work and training individualised plans), and identity. was, on balance, a positive Guardianship Act 1987 had positive experience during adulthood. lifestyle benefits

Resistance and challenge. Education for some (2, 6, 5) Negatives: Lunacy Act 1898 produced for most of the cohort a Pull of family, home and community. Varied experiences of relationships lifetime in state care. with family (2, 5). Importance of positive relationships. Positive and negative: In the Importance of positive relationships younger years, parens patriae with family and/or staff (2, 5). negatively impacted on family Experiences of abuse. relationships. The reverse was the case for the introduction of the Inflexibility of institutional life (2, 5, “person responsible” under the 6, 5). Importance of work. Guardianship Act

Administrative frameworks had Chronic, episodic and intermittent positive and negative impacts on the health issues were a reality 5: Early childhood Admission under the Lunacy Act 1898 meant cohort’s lives (5,6,7,8) throughout the cohort’s lives. For (1952-1957) that the children’s lives were dominated by many this was the primary reason legislative requirements, including the legal for admission (RQ 1) and the issues concept parens patriae. were ongoing (RQ2). Parents were expected to make co-contributions

to the children’s upkeep.

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Third order interpretations: Chapter First order findings Second order categories Common themes

Experiences of relationships differed according Expectations of co-contributions The state expected co-contributions to (i) level of family involvement and (ii) the from parents (5); important role of from families and auxiliaries and ‘pet’ system. support auxiliaries (6); SEA these benefitted the cohort requirement for work and/or training throughout their lives (RQ 2). The institutional environment was characterised (7) by inflexible routines. The introduction of social welfare

payments and obligations resulted in meaningful improvements in the 6: Teenage years (1957- These were the peak years of SEA and the Invalid Pension enhanced the cohort’s quality of life cohort’s physical environment and 1967) institutionalisation.; hence the cohort quality of life (RQ 2).. experienced overcrowding, stretched resources (7). and a regimented and medicalised approach to patient ‘care’. Relationships with family, staff and peers varied over time and were Administrative responses included: additional Negotiating with the health system influenced by administrative buildings, maintenance, and staff, the transfer of became a priority as the cohort aged frameworks (RQ 1 and 2). patients to other institutions and de- (8).

institutionalisation for a few. The nature of institutional life was Program offerings expanded to include recreational activities, industrial therapy, and remains inherently regimented, Parens patriae education and, for some, work at the hospital. and administrative which is at odds with recent policies oversight influenced the experience and practices of de- Auxiliary organisations improved the teens’ of death as well as life (5, 6, 8). quality of life. institutionalisation (RQ 2).

Cases of institutional abuse were Cases of of institutional abuse were 7: Adulthood and work Introduction of the SEA and Invalid Pension had reported, reflecting absence of reported. Reflects absence of protective regulations. (1967-1989) a major impact on the cohort’s quality of life appropriate administrative Participation in work and training was, on framework. balance, a positive experience during adulthood.

8: Retirement and Introduction of the Disability Services Act 1993 ageing (1989-2014) (NSW) and its associated policies, such as individualised plans, had a positive impact on

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Third order interpretations: Chapter First order findings Second order categories Common themes

the cohort’s quality of life. The demise of the sheltered workshop resulted in early retirement and re-focus on day activity programs Introduction of the Guardianship Act 1987 (NSW) with its requirement for a “person responsible” meant that, for the first time, there was a regulatory requirement for an ‘outsider’ to be engaged in the cohort’s lives and gave families a reason to reconnect. Negotiating with the health system became a priority as the cohort aged. In the final transition, including the death of peers, parens patriae continued to operate, though accessible funerals allowed for celebrations of life.

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10.1 Administrative Frameworks Set the Course of the Cohort’s Lives

Administrative frameworks—statutory laws and regulations—were the main drivers of institutional life. How these were implemented as policies and programs impacted the cohort’s lives in positive or negative ways, and had both intended and unintended outcomes.138

Admission under the Lunacy Act initiated the trajectory of institutional care for the children. The process began when families discussed care options with their medical practitioner. In the 1950s in NSW, there were three such options for ‘retarded’ children: living at home with family; admission to a private institution, which did not require scheduling from a doctor; or scheduling under the Lunacy Act into a government mental hospital, such as Watt Street, for full-time and, most likely, life-long care. This last option needed the approval of two medical practitioners.

Once scheduling had been approved, the legal concept of parens patriae came into effect. Statutory regulations and the hospital system were oriented towards the child remaining in State care. From the moment the cohort entered Watt Street, the State (via the hospital) assumed daily responsibility for their lives and began implementing administrative decisions based on the regulatory frameworks at Commonwealth and State levels. The children’s files contained evidence of the practice of parens patriae. For example, the process of having a child legally discharged under the Lunacy Act was lengthy and rarely used, favouring the State as the ultimate decision maker. Among the cohort, only one member is known to have been discharged in the early years, although other peers later left institutional care to live in the community in the de- institutionalisation era. In an informal practice of parens patriae, nurses served as substitute parents for the children. Sometimes parens patriae was exercised in direct opposition to parental wishes as, for example, when Gowlland’s parents were refused permission to care for him at home after a period of illness (see Chapter 5).

My findings suggest that families and staff believed that the children became ‘institutionalised’ over time and had little confidence that, as adults, the cohort could ‘assimilate’

138 Policy interventions can have intended and or unintended consequences for recipients (Merton, 1936). Within unintended consequences, there can be anticipated and/or unanticipated outcomes (de Zwart, 2015).

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into a group home environment or be supported to live at home. There seem to have been no substantive discussions between the cohort’s families and the institution about the possibility of de-institutionalisation. Although both the Gowlland and McLachlan families saw these options as ideal, the lack of practical support made them unachievable. Hence Gowlland and McLachlan, along with the majority of their peers from Peat Island, went to Casuarina Grove when Peat Island closed in 2010.139

Yet similar populations of young children admitted to institutional care within the same decade experienced very different outcomes as the result of changes in the administrative frameworks that were implemented during the late 1960s-early 1970s. For example, Robert Strike, who was admitted to Watt Street aged three in 1958, and Kim Walker, who was admitted aged two in 1959, were moved from Watt Street to Stockton as teenagers, where they were prepared for life in the community and subsequently left the hospital system as young adults (Strike, 2019; Walker as told to Knight and Ricci, 2015; Walker, 2006). This was a direct result of the implementation of the policy of de-institutionalisation at Stockton in the early 1970s, under which they were the targeted beneficiaries. Their life trajectory was completely different to that of the 1952 cohort who had entered Watt Street only seven years before. The majority of the 1952 cohort remained in institutional care for the rest of their lives.

As illustrated above, public policy academics note that administrative interventions can have intended and unintended consequences (De Zwart, 2015; Merton, 1936, 1968, 1976). Some can be anticipated but others can be unforeseen and their impact can be positive or negative. For example, Scull’s (1984) analysis of de-institutionalisation in the US mental health and criminal justice systems after World War II shows the policy achieved its intended outcome (de- institutionalisation) but its implementation had unintended consequences, including homelessness and the maintenance of institutionalisation in other forms.

There is often tension between the intention of administrative instruments such as laws or government policies and the lived reality of their implementation. For the population of children admitted in 1952, this was most apparent in the policy of de-insitutionalisation. In the early 1970s, the NSW Department of Public Health achieved its intention of de-institutionalising small

139 Of the 79 residents at Peat Island when it closed in 2010, 54 went to Casuarina Grove, 16 to Wadalba (a non- government operated group home), 5 to other large residential centres such as Stockton; 3 to other group homes; and 1 went to live with family (Fisher et al., 2013, pp. 22-23).

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numbers of suitable patients in mental hospitals, particularly those with intellectual disability living at Stockton. Subsequently, the Richmond Report (1983) recommended that this process be formally adopted as policy. This was duly endorsed and implemented under the Labor Government in the mid-1980s. Most recently, it received further official endorsement in the NSW government’s 10-year Stronger Together plan for disability services (NSW Government, 2006, 2011). Stronger Together 2 (2011) committed the government to closing the large residential centres where cohort members were living. However, this commitment was never fully honoured. Peat Island was closed as recently as 2010 but Stockton remains open, with over 200 residents. The intentions of the policy were not fully realised because of unanticipated barriers, such as opposition from the nursing and public sector unions, and from parents.

Some unintended outcomes of administrative interventions had a positive impact on the cohort. For example, the introduction of the Guardianship Act 1987 (NSW) with its requirement for a person responsible had a beneficial effect on the cohort, particularly in relation to how medical treatment decisions were made. An unintended positive benefit was the extension of the remit of the person responsible concept beyond the original intent of the legislation to include consultation and contribution to decisions about lifestyle, notably in relation to the individual plans of cohort members. Thus the Guardianship Act 1987 (NSW) had the unintended positive consequence of creating closer connections with families.

Examples of policies that had an intended positive impact were the introduction of the Sheltered Employment Allowance (SEA) in 1967 and the Invalid Pension in 1980, and the NSW Disability Services Act NSW 1993. As has been discussed in detail in Chapter 7, these social welfare interventions had a transformative effect on the lives of the cohort. The two social security payments meant that, for the first time, recipients had their own money to spend as they wished. This was an unprecedented source of autonomy and control. Those in receipt of the SEA also began to experience forms of work or training that were more closely aligned with everyday activities in the wider community.

The NSW Disability Services Act 1993 (Act) had a significant positive impact on service

standards in the large residential centres where the cohort lived. As elaborated in Chapter 8, for the first time daily routines and activities became focused on individual needs instead of treating residents as part of a group. This policy shift was reflected in the introduction of personalised

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care plans. Again for the first time, members of the cohort were being asked what they wanted to do and what was important to them. When implemented well, these administrative tools enhanced the cohort’s overall quality of life.

Individual plans had another—possibly unintended—benefit. Because they required input from all stakeholders, including the person responsible, some families became involved in the life of their cohort member in ways that had not been possible since their childhood. This was certainly beneficial for McLachlan and Gowlland, whose families became routinely involved in a range of decisions from the 1990s (see Chapter 8). As a result, their family relationships grew stronger after decades of peripheral involvement in medical issues, birthday or Christmas visits.

Administrative frameworks also impacted in both positive and negative ways. This was observed most often in relation to parens patriae. For example, the temporary leave provisions of the Lunacy Act were stringent with regard to leave requests. Only three of the 13 children in the cohort had any leave with their family during their Watt Street years. Although it was encouraging that officers of the state took seriously their responsibility to scrutinise the appropriateness of any leave, it also meant that the administrative process of applying for families to apply for leave was onerous and discouraging, thereby contributing to the disruption of family bonds.

The Coroner’s Act 2007 (NSW), which came into effect in the cohort’s adult years, had both a positive and negative impact. As discussed in Chapter 8, the Coroner was required to establish the circumstances and cause of death of all individuals living in State care. This was a positive development in that it ensured the death would be properly investigated. On the other hand, it impeded the natural family grieving process.

10.2 Health Issues Affected the Cohort throughout their Lives

Health issues were central to the admission of many of the cohort to Watt Street in 1952. Some families thought that the hospital would provide a more suitable environment in which their child would receive holistic care. Others could no longer cope with their child’s complex needs and had no viable alternatives other than placement in an institution. Not surprisingly,

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many members of the cohort died prematurely. Indeed, three of them died within the first year of admission (Jennifer, Susan and David).

A recurring theme in the data was concern about the quality of patient care and the standards of the hospital facilities, particularly in relation to over-crowding. Bourke Gibbons’ recollections of his teenage years at Peat and Milson Islands highlight the inadequacy of the medical care and the ever-presence of death, as does the case study of Michael McFadden’s deterioration and death aged 13 years.

Ongoing medical and health issues compounded as the cohort aged. Many of their interactions with hospitals, for emergencies and/or care for chronic conditions, were frustrating for families and carers as the public health system struggled to respond to people with an intellectual disability or differentiate their health issues from their disability. Administrative requirements became more formalised following the introduction of the person responsible, which clarified the decision-making process in relation to medical and dental treatment (see Chapter 8).

10.3 Co-contributions from Families and Auxiliaries Benefitted the Cohort

The government mental hospitals were agents of the state. As explained in Chapter Six, the auxiliaries at Stockton and Peat and Milson Island raised funds for patient amenities, carried out volunteer work with the cohort and, in later years, advocated for residents.

In the children’s early years the concept of co-contribution was integral to Australian social welfare policy, including in government mental hospitals such as Watt Street which provided full-time nursing care and board and, for some, education and therapy. Co-contribution meant that the state contributed welfare services and/or social security payments and the recipient or guardian (in this case the children and their parents) contributed either financially or in-kind (Kewley, 1961). Parents or guardians were expected to make these contributions from their Child Endowment allowance. As long as a “reasonable contribution” was made, the parent or guardian remained eligible to receive the allowance, since he or she technically still had “custody, care and control” even though the child was in institutional care (FACSIA, 2004, p 99).

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Co-contribution benefitted children whose parents could and did contribute consistently. These children were more likely, for instance, to have shoes that fitted. Gowlland’s parents sent money one year for a birthday cake for Ricky; in contrast, nurses recalled, most birthdays at Watt Street went uncelebrated. The overall impact of co-contributions remains uncertain. The reality was that children without such family support, such as Richard McLachlan and Elizabeth, were still fed, clothed, and cared for.

During the cohort’s teenage and adult years co-contribution primarily came from the auxiliaries. These played a pivotal role in fundraising for lifestyle amenities such as the swimming pool at Peat Island. Some also contributed to annual amounts of pocket money which ensured equitable participation in excursions and canteen purchases.

The Sheltered Employment Allowance (SEA) introduced in 1967 reduced the need for financial assistance from the auxiliaries, which instead made in-kind contributions such as running the canteens at Peat and Milson Islands and teaching patients how to use money in preparation for shopping in the community. The successful Grandparents Scheme at Stockton in the 1980s provides another example. During the cohort’s retirement years, co-contribution came in the form of family involvement via the person responsible requirements in the Guardianship Act 1987 (NSW), as discussed above.

Unfortunately, the literature fails to address the role of family co-contributions in patients’ lives, even though such co-contributions were required by law early on.

10.4 Social Welfare Payments and Obligations Improved Quality of Life

As discussed earlier, the introduction of the SEA led to meaningful improvements in the cohort’s quality of life. It gave recipients a structure and routine to their daily lives through weekday work or training, upgraded accommodation, some exposure to the outside community and a small amount of fortnightly pocket money to purchase items of their choice.

Nonetheless, there was a gap between the intent of the policy and its implementation. As explained in Chapter 7, the SEA was not fully implemented across the hospitals. Stockton initially targeted only those patients who could be relatively easily de-institutionalised. Over half the population at Peat Island was engaged in work or training within a couple of years of its introduction, although implementation was much slower at Stockton.

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The downside for the cohort was that the work was repetitive and boring, with the hospitals challenged to keep up a steady flow of contracts. The additional pay they received was relatively small, and was sometimes aggregated to purchase group items or experiences rather than what an individual might choose. When the Commonwealth introduced new industrial conditions and required sheltered workshops to be located in the community from 1986, the hospitals struggled to meet these standards, and the workshops at Peat Island and Stockton were closed by the 1990s. The focus then switched to day activities, as the majority of the cohort were now in receipt of the invalid pension.

The accounts of institutional life reviewed in Chapter 2 support this dissertation’s finding about the importance and positive experience of work engagement for people with intellectual disability living in institutional settings, particularly work that involved helping other patients (particularly children), maintenance work such as gardening or doing the laundry in the hospitals where they lived. Only two studies referred to assembly line and packaging work of the type undertaken in sheltered workshops by many of the cohort from 1967 onwards (Hallrup, 2012; Roberts & Hamilton, 2010). Overall, participants consistently reported that they enjoyed the work they performed, although they expressed dissatisfaction about doing it for free or for low wages.

10.5 Relationships with Family, Staff and Peers Varied Over Time

The cohort’s engagement with their families over their life time was influenced by a range of factors, including the administrative requirements of the era. The level of family involvement also varied over time and among the families. Some families were proactively involved, while two children (Elizabeth and Richard McLachlan) were wards of the state or orphans and had no family visits in childhood.

The extent of family involvement seems to have reflected administrative requirements for some form of engagement. In the childhood years, the expectation for a co-contribution meant that families paid for clothing and sundries. A decade later in the teenage years, families were expected to make informal contributions, often in-kind, through the voluntary work and fundraising activities of the hospital auxiliaries. The auxiliaries gave many parents a meaningful way of engaging with their children and staff at the hospital.

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In the cohort’s adult years, the absence of administrative requirements encouraging family involvement, and the provision of pocket money under the Invalid Pension and the SEA, may have contributed to less family involvement. Families no longer had a structured role in fundraising nor were they required to make administrative decisions. During these adult years, families—if they were involved at all—were encouraged to make contributions to the collective via the auxiliaries. Since the cohort were adults, families were perhaps less likely to be actively involved. At the same time, the ability of family members, particularly parents, to contribute was affected by the fact that they were themselves ageing.

A range of factors informed individuals’ relationships with their family—their own and their family members’ age and life stage, temperament, family dynamics, and proximity of the family home to the institution. However, the role of changing administrative requirements should not be under-stated, particularly the effect of the introduction of the person responsible (see Gowlland’s case study in Chapter 8).

All of these factors influenced the ebb and flow of Gowlland’s relationship with his family. Of particular significance in the present context is an entry in his administrative file circa 1986, the year prior to the introduction of the person responsible concept under the Guardianship Act. A staff member wrote: “What seems to be Ricky’s future? He has no contact with his family, as only sister is alive”. The implementation of the Guardianship Act, however, facilitated regular interaction with his eldest sister and closer relationships with other members of his family from the 1990s.

McLachlan’s experiences of family and relationship took a different path. He lost both parents to tuberculosis within a year of his admission and had no interaction with anyone else in his family over the next 40 years. In 1992, two of his brothers located him after a national missing persons’ inquiry. A relationship developed between McLachlan and several of his brothers and, later, his niece, who is today his person responsible. His integration into his niece’s family was evidenced in his attendance at her daughter’s wedding and her desire to move Richard to a group home or aged care facility closer to her home.

Nurse and peer relationships carried more weight in some instances particularly when there was no family involvement. The majority of nurses took their caring role seriously, developing emotionally engaged relationships with many in the cohort. In some ways these

246 relationships can be seen as parens patriae in practice, as nurses acted as substitute parents. When the members of the cohort were young, these relationships were condoned by hospital leadership. As discussed in Chapter 5, the ‘pet’ system was most evident at Watt Street and, later, at Stockton in the mid-1960s with the arrival of a new wave of younger female nurses. Some would take their ‘pet’ out on an excursion or home visit. These practices were discontinued during their adult years, though it is not clear why. Nonetheless, some retired nurses acted as advocates for ageing former clients or became their legal guardians under the Guardianship Act.

Peer friendships were consciously facilitated by progressive nurses during the cohort’s adult and retirement years according to those I interviewed. These peer to peer relationships varied depending on the personality of the individuals, the nature of their disability, and the opportunity for the friendship to develop. Nurses frequently spoke about peer friendships blossoming in the context of work, living arrangements or day activity programs.

Two of the eight studies reviewed in Chapter 2 identified peer friendships as an important part of the lives of persons with intellectual disability and their experiences of institutional life (Hreinsdottir & Stefansdottir, 2010; Roberts & Hamilton, 2010). This suggests, as did my own findings, that peer friendships were important to some individuals but not necessarily to all. During the cohort’s later retirement years, some forms of peer friendship were actively supported by the administration. For example, an older couple married during their time at Casuarina Grove and lived together in the rooms next to Gowlland. In recent years, McLachlan has attended day activity programs with his female companion and sometimes shares mealtime with her.

10.6 Institutional Life Remains Regimented

The cohort first experienced the regimentation of institutional life at Watt Street, a regimentation that persisted at least until the early 1990s. Throughout the latter part of this period, the sites in which they lived were the same—they were simply remodeled to accommodate more person-centred arrangements.

Although institutional life changed for the better by the 1990s, these environments fell short of international, Commonwealth and NSW policy and program requirements. For

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example, Casuarina Grove, where McLachlan and Gowlland moved in 2010, is described as a purpose-built, first-of-its-kind, government aged care facility for intellectually disabled persons. Although a vast improvement on the building conditions at Peat Island and Stockton, an independent evaluation (Fisher et al., 2013) reported that it failed to meet the person-centred principles of the UNCRPD and NSW government policy objectives under Stronger Together II (2011).

The continued existence of institutional regulation in the face of changing administrative frameworks needs to be understood in the context of de-institutionalisation processes in NSW at this time. The ‘first wave’ of de-institutionalisation in NSW government mental hospitals followed the introduction of the SEA in 1967 and the subsequent preparation of residents for work and community living. Recipients of the SEA lived in refurbished ‘hostel style’ individual rooms (as opposed to dormitories). The ‘second wave’ was propelled by the Richmond Report of 1983, during which the accommodation at the sites where the cohort lived was further ‘scaled down’. For example, some of the disused staff accommodation at Peat Island became small group homes for the more capable patients. In 1989, the transfer of responsibility for residential care of people with intellectual disability to the Department of Community Services represented a philosophical shift from the former medical model to a community-based approach to social and, preferably, also economic participation. This administrative transfer contributed further de- institutionalisation in the environments where the cohort lived by encouraging more home-like and personalised accommodation, albeit within the context of the individual’s own room.

Nonetheless, when the hospitals finally closed in 1989, the cohort remained on the same physical sites, which were renamed large residential centres, and the staff were still predominantly nurses. In other words, the external scale of the buildings and the size of the population reinforced an institutional culture based on highly routinised service delivery—the opposite of what is needed for a person-centred approach. With the introduction of the Disability Services Act 1993 (NSW), higher standards of service delivery were required at the large residential centres. The new standards were grounded in human rights principles and advocated a person-centred approach to service delivery.140 The introduction of individualised plans from the early 1990s reflected this approach. In the NSW policy context a person-centred approach

140 The concept of a person centred approach was advocated by social policy theorists and practitioners in the UK in the early 2000s (Leadbeater, 2004; Leadbeater & Lownsbrough, 2005; Leadbetter Charles et al, 2008).

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was later defined as: “People with a disability and their families and carers are to be at the centre of decision-making about how the specialist disability system supports them, not just as the focus but as the key determiners of how available resources are used” (NSW Government, 2011, p. 20). Whilst these policies were progressive, their implementation was made difficult due to the institutional environment in which the cohort remained living.

The infrastructure of the large residential centres such as Stockton and Peat Island (until 2010) and medium-scale aged care facilities like Casuarina Grove is, by its very nature, contrary to the realisation of person-centred approaches and the human rights values expressed in the United Nations CRPD (2008). These environments continued to existent for three main reasons.

First, the NSW disability services system that applied to the cohort in large residential centres from the 1990s141 was based on a ‘block funding’ model. Under this model, the NSW Department of Ageing, Disability and Home Care select service providers who offered ‘purchased services’.142 This was potentially efficient in terms of economies of scale, but left the cohort with little in the way of service choice. The funding model thus negated individualisation and choice in person-centred planning and the standards under Stronger Together 1 and 2

Second, the sites at Peat Island and Stockton are former mental hospitals and retain the institutional buildings, large day activity and therapy rooms, industrial kitchens and extensive grounds that characterised such facilities. The accommodation, although vastly improved in relation to space and possibilities for individualisation, retains an institutional ‘feel’: each eight- ten bed ‘unit’ is largely identical, residents do not have keys to their bedroom, and there is a scheduled daily routine. Even Casuarina Grove, a new-build with up-to-date amenities, struggles to break away from a quasi-institutional paradigm.

Third, workforce and organisational issues have made it difficult for these policies to be fully realised on the ground. ‘Workforce issues’ were also cited in Fisher et al.’s (2013) evaluation of the implementation of person-centred principles at Casuarina Grove.

In summary, as other research on the challenges associated with de-institutionalisation of persons with intellectual disability in Australia and NSW has indicated (Chenoweth, 2000;

141 Until the introduction of the NDIS in 2014. 142 A purchased service is any service that is contracted for and performed by an external party rather than in house staff.

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Fisher et al., 2013; Molony & Taplin, 1988a, 1988b, 1990; NSW Ombudsman, 2010; Wiesel & Bigby, 2015), the structural characteristics of the cohort’s living environments were powerful inhibitors of the realisation of progressive, person-centred policies. This finding further demonstrates that, even with the best of intentions, policies are unlikely to be effectively implemented unless environmental and structural impediments are addressed.

10.7 Absence of Frameworks to Address Institutional Abuse

This theme cross-cut the findings from each life stage of the cohort and the various data sources, although it was most evident in the witness accounts of nurses during the 1960s and early 1970s.

This study, like others before it (e.g. Blatt & Kaplan, 1966; French, Dardel, & Price- Kelly, 2010; Llewellyn, 2016; Sobsey, 1994), found examples of abuse in institutional settings for people with intellectual disability. The findings from the present study have made an original contribution to the historical evidence base on institutional abuse in Watt Street, Stockton and Peat and Milson Island in the post-World War II period. There was an increase in cited instances in the 1960s-1970s, which coincided with the cohort’s teenage and early adult years, when they were living in overcrowded, single sex, understaffed facilities, without an administrative mechanism in place to prevent and/or respond to incidents of institutional abuse. Similar organisational factors were identified in research by Palmer, Feldman, and McKibbin (2016) with regards to organisational factors in institutions that result in conditions where child sexual abuse occurs. Overall, the findings point to the absence of administrative frameworks around the prevention of and appropriate responses to institutional abuse as a key explanatory factor. This situation began to change from the mid-1980s, as systematic policy-based procedures were introduced at the sites where the cohort lived.

10.8 Summary

This chapter has examined the impact of changing administrative frameworks, which sought to promote a more person-centred, community-based approach to care, on the lived experiences of the cohort of children from the time of their admission to Watt Street in 1952 until the later years of their lives. The analysis shows that the implementation of these frameworks was only partially successful in achieving the policy goals. The cohort continued to

250 live in sites that retained many, if not most, of the defining characteristics of institutions, in that the routines, relationships and experiences of the cohort continued to be dictated, for the most part, by the decisions of others.

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Chapter 11: Conclusion and Recommendations

This thesis has presented the results of a case study exploring the lives of a group of children with an intellectual disability who were admitted to Watt Street Newcastle Mental Hospital in 1952. The study addressed two research questions: Why were the children admitted to Watt Street?143 What was the impact of various administrative instruments (statutory laws and policies) on their lives? This chapter presents the two main conclusions that I have drawn from my analysis and interpretation of findings. I also discuss the limitations of the study and make recommendations for research, policy and practice.

11.1 Policy Challenges to the Realisation of Human Rights Values

The residential settings in which many people with intellectual disability continue to live in NSW represent a vast improvement over the conditions that prevailed at the time of the children’s admission in 1952. However, they retain important elements that characterise Goffman’s (1961) concept of the ‘total institution’ as a place in which “sleep, play and work” (p. 17) take place in a single location.

Members of the cohort have lived in institutional settings at all stages of their lives—a mental hospital as children, a hospital in their teens, a large residential centre as adults, and in an aged care facility in retirement—where they slept, enjoyed recreation and worked. As long as these institutional settings remain in various guises in NSW, residents will not enjoy the rights embedded in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), despite the aspirations of Commonwealth and NSW policy. The UNCRPD seeks to promote the human rights and fundamental dignity of people with disabilities. As a signatory to the UNCRPD, Australia has undertaken to ensure that these rights are respected and implemented at Commonwealth and State level through, for instance, the National Disability Insurance Scheme Act 2013 (Cth) and the Disability Inclusion Act 2014 (NSW), respectively.

143 See Chapter 5, section 5.4 ‘The Case study cohort: reasons for scheduling’

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The realisation of two of the eight general principles in the UNCRPD has proved particularly challenging for the members of the cohort who live in residential care facilities such as Casuarina Grove.

CRPD Principle 1—“Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons”—is closely aligned with the person-centred approach that was actioned in NSW via individual plans. The challenges associated with the implementation of individual plans in residential settings were discussed in Chapter 9. Nonetheless, small gains have been made through, for example, the introduction of individualised plans in the 1990s, which has facilitated more personalised service delivery, albeit to a limited extent.

CRPD Principle 3—“Full and effective participation and inclusion in society”—has yet to be realised in the residential environments in which members of the cohort have lived since the early 2000s. These settings retain the organisational and physical structures that are characteristic of institutions and which act as barriers to the achievement of community inclusion. The scale of these residential settings and the nature of their staffing arrangements result in inflexible and regimented routines for meals, bathing, dressing, cleaning and recreation. The development of smaller, more personalised environments hindered by limited government budgets, the perceived need to achieve economies of scale, and the persistence of ‘traditional’ group-oriented care practices.

On a positive note, research findings showed that some administrative instruments had a positive influence on the personal relationships of people with intellectual disability in residential care. Although the development of residents’ personal relationships remains largely constrained by management, policies such as those of having a person responsible and the implementation of individual plans, which include a requirement for choice and control in personal relationships, have facilitated the renewal of family connections and the development of supportive relationships. The literature reviewed in Chapter 2 highlighted the importance of fulfilling personal relationships in the lives of persons with intellectual disability in institutional settings.

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One of the policy and practice challenges that remain in institutional settings is how to prevent and respond to institutional abuse. I argue that appropriate prevention and reporting mechanisms need to be considered as part of an institution’s core policies and practices. The increase in instances of institutional abuse cited by nurses and workers in the 1960s-1970s, which coincided with the cohort’s teenage and early adult years, was associated with an absence of administrative frameworks and with other organisational factors that created barriers to the effective prevention of and responses to incidents of institutional abuse.

These findings are relevant to the work of the current Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Further research is warranted into developing a better understanding of what administrative interventions could play a role in better protecting vulnerable persons with intellectual disability living in institutional settings.

11.2 Australia’s Federalist Governance Structure is a Source of Tension

The direct impact on people with intellectual disability from Australia’s federal system and its respective policies at Commonwealth and State level has been a neglected area of research. This study’s findings have generated new insight into the lived reality of these intergovernmental dynamics among those who rely on state care. Under Australia’s federal structure, there is constant tension between the Commonwealth and the States with regard to responsibilities for policies and program for people with disabilities, including people with intellectual disability. In practice, Australia’s federal system is more centralised than it might appear, partly due to the ways in which powers are allocated between the two main levels of government144 but mainly because the Commonwealth controls the purse strings, which creates an imbalance between responsibilities and revenue to fund them. Apart from social security, over which the Commonwealth has exclusive power, all other legislative powers relevant to people with an intellectual disability, including main stream service provision (eg. public

144 The Australian Constitution allocates only a number of specific powers to the Commonwealth, with all other law making residing with the States (Saunders & Foster, 2014, p. 98). Only in the event of an inconsistency between a Commonwealth and State law does the former prevail, under section 109 of the Constitution (Saunders & Foster, 2014, p. 87).

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housing, hospital, education, emergency services), lie with the States (Saunders & Foster, 2014).145

According to Lindsay (1996), “Commonwealth responsibility for disability policy has evolved gradually” over the past century (p. 7), with the Commonwealth assuming greater responsibility in the past 50 years in relation to income support, service provision and anti- discrimination legislation. The Commonwealth’s changing role mirrors changing attitudes to disability. Originally viewed as a family, a charity and then a welfare issue, disability is increasingly seen as a human rights concern and community responsibility. Commonwealth policy both reflects these views and enhances them (Lindsay, 1996, p. 8).

This federalist dynamic has created mixed outcomes for the cohort over their life time. When the intergovernmental policy agreements and funding mix are adequate, there can be positive outcomes for vulnerable people. When this is not the case, it is up to the states to decide if they are going to seek to meet the policy standards established in Commonwealth Agreements or other arrangements in order to grasp the ‘funding hook’—or not. Over the course of the lives of the cohort, Commonwealth policy leadership has at times had a positive impact, for example, the establishment of basic service standards associated with eligibility for the SEA. On other occasions, however, it has been much less successful; for instance, NSW has been slow to close all its large residential centres despite international obligations and its own policy undertakings.

The expectation of co-contributions embedded in disability policy also proved to have a positive impact, as long as a safety net was built into its design. Co-contributions from family and/or auxiliaries clearly benefitted the cohort when equity was built into the system. One of the reasons for the effectiveness of the auxiliaries in the 1950s-1970s was that they provided a financial and practical safety net for all members of the cohort.

This study has also identified a number of occasions on which Commonwealth and State initiatives did not achieve positive outcomes for the cohort. For example, the Commonwealth’s Institutional Pension was paid directly to the State and then to the mental hospital. In NSW, the

145 In 2020, Australia has three key policy instruments that identify contemporary Commonwealth and state intergovernmental responsibilities for persons with disability: the National Disability Agreement (COAG, 2009), the National Disability Strategy 2010-2020 (2011) and the National Disability Insurance Scheme Act 2013 (Cth). The Australian Productivity Commission (2019) noted the need for an overhaul and streamlining of the existing intergovernmental disability policy frameworks (Olney & Dickinson, 2019).

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patient never saw the money, and the amount was low. A contemporary example is NSW’s failure to close its remaining large residential centres, despite in-principle commitment to do so in accordance with UNCRPD obligations and Council of Australian Government (COAG)146 agreements under the National Disability Strategy 2010-2020.147

Further, NSW has sometimes been slow to implement statutory changes requested by the Commonwealth with regards to disability service principles. For example, it took NSW seven years to introduce the necessary ‘mirror’ legislation (the Disability Services Act 1993 (NSW)) to the Disability Services Act 1986 (Cth). It was the last jurisdiction to do so. As Saunders and Foster (2014) explain, there is little that the Commonwealth can do to speed things along:

The central government has no power to force competent states to legislate. However, by use of the grants power, the central government may offer monetary incentive to legislate (p. 98).

Intelligent use of financial incentives is the key to remedying such situations—as, for instance, with the SEA in 1967—but this has its limitations. Since 2008, the COAG Council System has been the forum in which formal intergovernmental agreements are reached, including the most recent National Disability Strategy 2010-2020. Despite its potential to generate productive outcomes for jurisdictions, policy makers and the disability sector, and to address flaws in federal system through “constitutional engineering” (Poirier, 2002, p. 425), COAG has received limited academic attention.

11.3 Limitations of the Study

This section discusses the limitations of the study, identifies potential sources of bias, and explains how I sought to mitigate their effects.

146 The Council of Australian Governments (COAG) is the peak intergovernmental forum in Australia. The members of COAG are the Prime Minister (chair), State and Territory First Ministers and the President of the Australian Local Government Association (ALGA). COAG was established in 1992 to manage matters of national significance or matters that need co-ordinated action by all Australian governments. See: https://www.coag.gov.au/about-coag. 147 See policy action item 1: Economic Security in the National Disability Strategy 2010-2020 (2011). https://www.dss.gov.au/sites/default/files/documents/05_2012/national_disability_strategy_2010_2020.pdf

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First, I was unable to access all of the cohort’s files;148 only six were complete.149 To help fill in the gaps, I interviewed stakeholders involved in the cohort’s lives and drew on government and other historical documents.

Second, the Watt Street Admission Books contained no information on how 41 of the 86 children in the study population exited that hospital. It is not known if they died, were transferred to another mental hospital or were discharged.

Third, there were also gaps in the data pertaining to the cohort’s teenage years (1957- 1967). Only one of the 13 (Michael McFadden) had an administrative file for these years. I was unable to interview nurses or other staff who worked at Peat Island at that time, but I was able to interview three nurses who worked at Stockton. These data gaps were unforeseen, so I sought out alternative data sources, including historical accounts (in particular, Andersen’s 2009 interviews with staff who had worked at Stockton and Peat Island), biographical accounts (such as that of Bourke Gibbons), and government documents.

Fourth, I was only able to interview one cohort member, Richard McLachlan. However, I had grown up with my uncle Ricky Gowlland and had an intimate knowledge of Ricky’s life in state care. In an ideal world, I would have interviewed the remaining living members of the cohort. Sadly, one member of the cohort died in 2018 and the other surviving member did not agree to the interview request. To partly address this gap, I drew on first person accounts of people with intellectual disability who had lived in institutional settings (see Chapter 2) to challenge and complement my own data.

Fifth, part-way through the study I realised that while I greatly benefitted from the historical scholarship available (Ellmoos, Cummins and Mitchell) I felt the need to demonstrate more completely the influence of the relevant legal and policy instruments, and concluded that their influence was profound. Accordingly, I accessed the original administrative sources for verification wherever possible.

148 This can be attributed, in part, to the ethical agreements with the NSW Department of Family and Community Services that prevented me from matching the NSW Health files of cohort members with any NSW Department of Family and Community Services files. Luckily, McFadden’s files were raised privately by his brother from NSW Health. 149 Cohort members: Gowlland and McFadden; Gregory (who was discharged and went back to his country of origin), and the three children who died at Watt Street – Peter, Susan and Jennifer. 257

I also acknowledge possible biases that I have brought to this research due to my professional and personal experiences. I came to this research as a professional public policy analyst with over 20 years’ experience. I am trained to frame research questions about people’s lives in terms of laws and policies, notably criminal law and social policy. Recently I worked at the Royal Commission into Institutional Responses to Child Sexual Abuse (2014-2017), so I was likely attuned to identifying examples of abuse among the cohort and in the stories of their peers.

From time to time, my personal relationship with my uncle Ricky threatened to influence the objectivity of my analysis. For example, I found it hard to accept the accuracy of research findings indicating that Ricky was one of only a small percentage of children with intellectual disability who were placed in full-time institutional care as children in the 1950s (Wen & Madden, 1998). I had believed this practice to have been more widespread, but the evidence indicated otherwise.

To mitigate these limitations and biases, I engaged in ongoing critical reflection throughout the research process. I did this through journaling and discussion with my supervisors. I remain open to the possibility that another researcher might have been told different stories and reached different conclusions.

11.4 Recommendations

The findings from this study have important implications for research, policy and practice, as elaborated below.

11.4.1 Research

This study has established that institutional settings are structurally incongruent with and set up barriers to the realisation of UNCRPD policies of choice and control and person-centred approaches. Further investigation is needed to identify ways of minimising or overcoming these barriers in contemporary residential settings or quasi institutional environments such as aged care facilities.

This study has shown that Australia’s federal system can serve to both facilitate and hinder disability service provision to persons with intellectual disability. Building on this dissertation’s conclusion, further research is needed to understand intergovernmental dynamics that have successfully leveraged the strength of Australia’s federalist system, including the

258 current COAG infrastructure, to create optimal citizenship outcomes for persons with intellectual disability in Australia.

The findings confirmed those from previous research in highlighting the importance of relationships for persons with intellectual disability living in residential environments. Future research could be directed towards identifying ways of facilitating and supporting such relationships.

More information is needed on the historical and contemporary prevalence of institutional abuse of persons with intellectual disability and the extent to which the introduction of administrative frameworks has impacted on prevention and on reporting and responding to incidents of institutional abuse. This evidence could inform the development of best practice policy and training for those living or working in such settings.

11.4.2 Policy

Policy evaluation should be conducted on a regular basis to assess the human impact of administrative interventions on their target population, using an evidence-based approach. This needs to be ongoing, independent and objective. As part of this Commonwealth and state policy evaluation needs to be regularly undertaken to ensure jurisdictions are implementing domestic undertakings regarding the UNCRPD principles.

Policy research is needed to clarify the role of co-contributions in social welfare and other disability initiatives. Questions might include: What initiatives have worked to date and why? What initiatives may work in the future?

This study has shown that social welfare interventions based on appropriate policy, such as the SEA, can benefit people with intellectual disability. Further evaluation of the positive and/or negative effects of such polices is warranted.

NSW’s remaining large residential centres need to close as soon as practical and regular monitoring of other potential institutional environments need to be undertaken to ensure they comply with UNCRPD Principles.

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11.4.3 Practice

The findings also have implications for practice in contemporary residential care settings. Appropriate education and training should be increased—and made mandatory—for everyone associated with these facilities. Such training could include, though not necessarily be limited to information about pre- and post-service options that better align with the principles of the UNCRPD, and ways of facilitating choice and control and person-centred approaches for persons with intellectual disability through individual plans.

11.5 Final Reflections

In undertaking this research I had three aims. First, I wanted to better understand for myself the reasons why children, like my Uncle Ricky, were institutionalised in mental hospitals in the 1950s. Second, I hoped to share the little-known stories of Ricky and his peers. Third, as a career public servant and social policy analyst, I wanted to better understand the lived experience of administrative interventions. I wanted to know which interventions worked, which did not, and why. I can now say that I have achieved these aims.

Finally, I would like to offer my reflections on three aspects of the research process.

First, throughout the research journey I have come to understand that, despite one’s best intentions, research designs sometimes require compromise. For example, my original intention was to collect longitudinal data from the case files of all 13 children in the cohort. In fact, as explained above, I only had access to the files for five children. I had to accept that the research design was no longer a ‘Rolls Royce’ but a basic, albeit adequate Volkswagen, which was just as functional. It took some time for me to process that there were other ways of filling the data gaps of the cohort’s lives and that the interviews with various stakeholders offered a different but rich perspective in lieu of the administrative files. Further, the process of interviewing stakeholders was both humbling and invigorating. Each interviewee offered a unique perspective and generously shared this with me.

On a professional note, I had hoped that undertaking this PhD would strengthen my knowledge of research and my research and writing skills, and deepen my understanding of disability legislation and policy in Australia and the lived experience of institutionalisation of people with intellectual disability. I was not disappointed.

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Finally, on a personal note, I had hoped to better understand my uncle Ricky’s life prior to my meeting him as a child. In many ways I wanted to reconcile and make sense of a family decision that he should live a life in state care apart from family. This research journey has allowed me to better understand the circumstances of my grandparents’ decision to admit Ricky to Watt Street, and to better understand the reasoning of the other parents in the cohort. These decisions were largely made out of desperation—with nothing in the way of Commonwealth social welfare alternatives as options to help them keep their child with a disability at home until the 1970s. Interviews with the three McFadden family siblings, McLachlan’s niece, and my own mother and aunt taught me that the decision to admit a young family member to an institution is often rationalized, never reconciled.

I hope that this research and its findings will be a catalyst for formal government acknowledgement of the Australians with intellectual disability who entered state care as children and remained there, and the lifelong impact of various administrative frameworks on them and their families. It is my hope that my findings, conclusions and recommendations may prove useful to inform policy development and advocacy for the rights of people with intellectual disability in state care in order to achieve more equitable outcomes for them as Australian citizens.

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Appendix A: Ethical approval

Research Integrity & Ethics Administration

Human Research Ethics Committee

Monday , 6 March 2017

Prof Gwynnyth Llewellyn Disability and Community; Faculty of Health Sciences Email: gwynnyth .llewellyn@sydney .edu.au

Dear Gwynnyth

The University of Sydney Human Research Ethics Committee (HREC) has considered your application.

After consideration of your response to the comments raised your project has been approved.

Approval is granted for a period of four years from 06 March 2017 to 06 March 2021

Project title: A case study of a cohort of children with intellectual disability who were admitted into Watts Street, Mental Hospital, Newcastle, Australia, in 1952. An examination of the lived experience of institutionalisation and administrative changes throughout their life course.

Project no.: 2016/960

First Annual Report due: 06 March 2018

Authorised Personnel: Llewellyn Gwynnyth; Andrews Zucker G; Carney Terry; Smith-Merry Jennifer; Baldry Eileen;

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Documents Approved:

Date Uploaded Version number Document Name 23/02/2017 Version 2 PIS for Participant Group One Survivors Feb 2017 23/02/2017 Version 2 PIS for Participant Group Tvvo Family Feb 2017 23/02/2017 Version 2 PIS for Participant Group Three Carers Feb 2017 23/02/2017 Version 2 PIS for Participant Group Four Supts Managers Feb 2017 23/02/2017 Version 2 PIS for Participant Group Five Administrators Feb 2017 15/11/2016 Version 1 PCF Survivors Plain English 15/11/2016 Version 1 PCF Family 15/11/2016 Version 1 PCF Administrators 15/11/2016 Version 1 PCF Supts Manager 15/11/2016 Version 1 PCF Carers 09/11/2016 Version 1 TAB I: advertisement template 09/11/2016 Version 1 TAB M Phone script for NSW Archivist 09/11/2016 Version 1 TAB K: Consent form for GUARDIANS 09/11/2016 Version 1 TAB J: Participant Information Statement for Guardians 08/11/2016 Version 1 TAB H: Interview Schedule Five: administrators 08/11/2016 Version 1 TAB E: Interview Schedule Two: family or next of kin 08/11/2016 Version 1 TAB F: Interview Schedule Three: carers of persons in instit 08/11/2016 Version 1 TAB G: Interview Schedule Four: Superintendents or Managers 05/11/2016 Version 1 TAB A Diagram 1 THREE pillars of research for the PhD 05/11/2016 Version 1 Tab B diagram 2 PARllCIPANT engagement steps

Research Integrity & Ethics Administra ion T +61 2 9036 9161 A BN 15 211513464 Le .el 2, Margaret Telfer Building (K07) CRICOS 00026A The University of Sydney E human ethics@sydney .edu.au NSW 2006 Australia W sydney edu.au/ethics

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Date Uploaded Version number Document Name 05/11/2016 Version 1 TAB C diagram 3 CONSENT processes 05/11/2016 Version 1 TAB D: Interview Schedule One: Primary Cohort persons with ID

Condition/s of Approval

• Research must be conducted according to the approved proposal.

• An annual progress report must be submitted to the Ethics Office on or before the anniversary of approval and on completion of the project

• You must report as soon as practicable anything that might warrant review of ethical approval of the project including: Serious or unexpected adverse events (which should be reported within 72 hours). Unforeseen events that might affect continued ethical acceptability of the project.

• Any changes to the proposal must be approved prior to their implementation (except where an amendment is undertaken to eliminate immediate risk to participants).

• Personnel working on this project must be sufficiently qualified by education, training and experience for their role, or adequately supervised . Changes to personnel must be reported and approved.

• Personnel must disclose any actual or potential conflicts of interest, including any financial or other interest or affiliation, as relevant to this project.

• Data and primary materials must be retained and stored in accordance with the relevant legislation and University guidelines.

• Ethics approval is dependent upon ongoing compliance of the research with the National Statement on Ethical Conduct in Human Research, the Australian Code for the Responsible Conduct of Research, applicable legal requirements, and with University policies, procedures and governance requirements.

• The Ethics Office may conduct audits on approved projects.

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• The Chief Investigator has ultimate responsibility for the conduct of the research and is responsible for ensuring all others in'lo{)lved will conduct the research in accordance with the above.

This letter constitutes ethical approval only.

Please contact the Ethics Office should you require further information or clarification. Sincerely

Associate Professor Rita Shackel Chair Human Research Ethics Committee

The University of Sydney HRECs are constituted and operate in accordance with the National Health and Medical Research Council's (NHMRC) National Statement on Ethical Conduct in Human Research (2007) and the NHMRC's Australian Code for the Responsible Conduct of Research (2007).

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