A Critical History of Indigenous Eye Health Policy-Making The terms ‘Aboriginal’ and ‘Indigenous’ refer to the many di erent peoples and language groups who were living in Australia at the time of European settlement, including the Aboriginal peoples of the continent and later the Torres Strait Islander people. This report uses the term Indigenous except where it is appropriate to retain the terms Aboriginal and Torres Strait Islander as used in historical documents referred to in this study.

Acknowledgements We thank the interviewees (who will remain anonymous) in this study for generously providing their time and wisdom as a contribution towards a better understanding of the policy-making process in Indigenous eye health from the time of the National Trachoma and Eye Health Program to the present. We acknowledge the funding support of the Indigenous Eye Health Unit, Melbourne School of Population Health, The University of Melbourne, and the secretarial support provided by Judith Carrigan and Judy Pryor and Rachael Ferguson. We also thank John Thompson and Roslyn Henderson for their unquestioning support.

Cover Image Artist: Ngarralja Tommy May, DOB 1935, Language Walmajarri Title: Wati Kujarra (Two Men) Story: “This was my brothers country in Wangkajungka country” Reproduced with permission of the artist. We thank the Fred Hollows Foundations for providing the photograph of their painting.

Title Page Image Artist: Eileen Forrest (Kurputti), DOB 1969, Jubilee Downs Station, Language Walmajarri Title: Pulkartujarti Story: “Spider Dreaming, this story from Jumangkarni (dreamtime). These are the hills along the road to Djugerari. This hills are fenced o now. If you go there you will get bitten by the little spiders, everyone who goes there gets bitten. There are lots of di erent types of spiders there. Back in the Jumangkarni the spiders were a lot bigger and they hunted and killed people”. Reproduced with permission of Towardsthe artist. E ective Sytem Reform

January 2011 Published by the Indigenous Eye Health Unit, Melbourne School of Population Health, the University of Melbourne. ISBN 978-0-7340-4209-5 A Critical History of Indigenous Eye Health Policy-Making Towards E ective System Reform

This report was prepared by Jilpia Nappaljari Jones 1, Graham Henderson 1, Nerelle Poroch 1,

Ian Anderson 2 and Hugh Taylor 3

1 Honorary Associates, Indigenous Eye Health Unit, Melbourne School of Population Health, University of Melbourne. 2 Professor, Onemda VicHealth Koori Health Unit, Melbourne School of Population Health, University of Melbourne. 3 Professor, Indigenous Eye Health Unit, Melbourne School of Population Health, University of Melbourne. Table of Contents

Preface...... 1

Summary...... 3

Recommendations...... 7

List of Abbreviations...... 8

Timeline of Important...... 11

1.0 Introduction...... 13

2.0 Broad Aim of Project...... 14

2.1 Speci c Aims...... 14

3.0 Key Questions...... 14

4.0 Objectives...... 15

5.0 Methods...... 15

5.1 Literature review...... 15 5.2 Interviews...... 16 5.2.1 Research Ethics...... 16 5.2.2 Questionnaire...... 16 5.2.3 Sample...... 16 5.2.4 Interviews...... 16 5.2.5 Analysis...... 16 5.3 Writing of Report...... 16

6.0 Findings- Literature Review...... 17

6.1 A history of Indigenous eye health policies within the context of broader key health policies in Indigenous and non-Indigenous Australia, 1980-2010...... 17 6.1.1 Introduction...... 17 6.1.2 The period pre- 1980...... 18 6.1.3 The period 1980-1989...... 20 6.1.3.1 Indigenous eye health...... 20 6.1.3.2 Broader signi cant policy events...... 24 6.1.3.3 Summary...... 26 6.1.4 The period 1990-1999...... 26 6.1.4.1 Indigenous eye health...... 26 6.1.4.2 Broader signi cant policy events...... 34 6.1.4.3 Summary...... 39 6.1.5 The period 2000-2010...... 39 6.1.5.1 Indigenous eye health...... 48 6.1.5.2 Broader signi cant policy events...... 57 6.1.5.3 Summary...... 58 6.2 A case-study of water and Indigenous eye health...... 58 6.3 Screening for diabetic retinopathy...... 58 i Table of Contents (continued)

7.0 Findings- Interviews...... 60

7.1 Introduction...... 60 7.1.1 The aims of the research...... 60 7.1.2 Respondent details and interview themes...... 60 7.2 1976-1979 National Trachoma & Eye Health Program- Respondent’s perspectives about Indigenous eye health policies...... 60 7.2.1 Respondents’ role in policy development...... 60 7.2.2 Policy processes in Indigenous eye health...... 61 7.2.3 Evidence and resources...... 62 7.2.4 Implementing the National Trachoma & Eye Health Program policies...... 63 7.2.5 The role of the community controlled health services...... 63 7.2.6 Respondents’ involvement in policy development and implementation after 1980...... 63 7.2.7 Concluding comments...... 65 7.3 1990-2010 Commonwealth public servant & consultant perspectives of Indigenous eye health policies...... 65 7.3.1 Respondents’ role in policy development...... 65 7.3.2 Policy processes in Indigenous eye health...... 65 7.3.3 Evidence and resources...... 68 7.3.4 Implementation issues...... 68 7.3.5 Role played by community controlled health services in the development and implementation of Indigenous eye health policies...... 68 7.3.6 Concluding comments...... 69 7.4 1990-2010 Fred Hollows Foundation, Royal Australian & New Zealand College of Ophthalmologists, Alice Springs Hospital Eye Department perspectives of Indigenous eye health policies...... 70 7.4.1 Respondents’ role in policy development...... 70 7.4.2 Policy processes in Indigenous eye health...... 71 7.4.3 Evidence and resources...... 72 7.4.4 Implementation issues...... 72 7.4.5 Role played by community controlled health services in the development and implementation of Indigenous eye health policies...... 73 7.4.6 Concluding comments...... 73

8.0 Discussion...... 73

8.1 Respondents’ role and policy processes in Indigenous eye health...... 73 8.2 Barriers & Facilitators to eective policy and program development...... 74 8.3 Strategies for future systems reform...... 76

9.0 References...... 77

ii Table of Contents (continued)

10.0 Appendixes...... 103

Appendix A- Advisory groups to AHMAC, AHMC and COAG...... 104 Appendix B- Informed- consent form for participants...... 105 Appendix C- Information sheet for participants...... 106 Appendix D- Questionnaire for participants...... 110 Appendix E- Location of the rst community- controlled Aboriginal Medical Service in Australia...... 112 Appendix F- Professor Archie Cochrane and the NTEHP...... 113 Appendix G- Medical Specialist Service Delivery to Rural and Remote Australian Communities: A Demonstrations Project (Brian 1997)...... 118 Appendix H- Recommendations of the Eye Health in Aboriginal and Torres Strait Islander Communities Report (Taylor 1997, pp. 7-12)...... 143 Appendix I- The Regional Model of Public- Private Eye Services Delivery (Brian 1998, pp 1-9)...... 146 Appendix J- Recommendations of the Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program Report (Taylor et al 2004, pp. xviii-xxvii)...... 153 Appendix K- The visiting Optometrists Scheme (VOS)...... 158 Appendix L- The Medical Specialist Outreach Assistance Program (MSOAP)...... 161 Appendix M- Bibliography of Indigenous Eye Health...... 163

iii Preface

This project was initiated in early 2009 by Professor Hugh Taylor and Professor Ian Anderson in the Melbourne School of Population Health at The University of Melbourne. The project forms part of a larger program of research on Indigenous eye health within the Indigenous Eye Health Unit of the Melbourne School of Population Health. Other projects in this research program include: The National Indigenous Eye Health Sur vey (Minum Barreng); The National Indigenous Eye Health Services Survey; Funding Eye Services in Remote Australia; and Improving Indigenous Eye Health by Mapping the Research Evidence to the Needs of Indigenous People.

The poor state of Indigenous eye health in Australia is well described in the literature (e.g. Taylor 1978; RACO 1980; Bellear 1985; Thomson & Merri eld 1988, pp. 185-193; Taylor 1997; Thomson & Paterson 1998; OATSIH 2001; Burns & Thomson 2003, pp. 273-289; Taylor et al 2004; AIHInfoNet 2004; Wright 2007; Atkinson et al 2008, p.553; Couzos et al 2008; Durkin 2008; Bragge et al 2009; Taylor et al 2009; AIHInfoNet 2010; Kelaher et al 2010; Taylor & Stanford 2010); in Appendix M of this report; and in the work of prominent ophthalmologists in Indigenous public health ophthalmology (Mann 1966, pp. 444-483; Mann 1983; Fiske & Johnson 1995; Hollows & Corris 1997; Allen 1994; Taylor 2008). However, there is less pu blished literature about the historical development of Indigenous eye health policy in Australia (e.g. Bellear 1985; Taylor 1997; Taylor et al 2004; Kaplan-Myrth 2004), and the important role Indigenous people have played in this development (e.g. Jones et al 2008; Briscoe 2010).

The literature on Australian Indigenous health policy (e.g. Osborne 1982; Toussaint, 1982; Hollows 1984; NAHSWP 1989; Saggers & Gray 1991a; Anderson 1994; Anderson & Brady 1995 ; Anderson 1997; Brian & Smith 1999; Anderson 2001; Anderson 2002; Murray et al 2003, pp. 1-37; Anderson 2004; Griew et al 2004; Kelaher et al 2005; Anderson 2006; Aldrich et al 2007; Anderson 2007; Kaplan-Myrth 20071; Couzos & Murray 2008, pp. 29-73; Dugdale & Arabena 2008, pp. 148-169; Matthews et al 2008; AIHInfoNet 2008) highlights the large amount of work done in this area, the importance and complexity of the processes involved, and the weaknesses in rollou t and implementation of policies. Murray et al (2003, p. 33) concluded that:

The political will and resources required to deal with the legacy of discrimination, neglect and destructive social policy remain elusive. An understanding of the health policy process and the history of Aboriginal health policy can assist Aboriginal communities, service providers, politicians and public servants to improve eorts to address inequity.2

A good case can be made that a critical history of Indigenous eye health policy-making may provide valuable insights for future debates in both eye health and Indigenous health policy-making more broadly3. These debates may include strengthening the link between policy formulation and implementation of policy directions (Matthews et al 2008), vertical (i.e. condition focused) program development compared with other models of primary health care development, community control in Indigenous health, health care nancing and systems development.

1 This book published in 2007 had its origin in her Yale University PhD thesis (Kaplan-Myrth 2003) although her thesis is not mentioned in this book. 2 It is worth remembering here the comment by British physician Georey Rose (1992, p. 2) that ‘Doctors often act as though their professional responsibility does not go beyond the sick and the nearly sick (those at imminent risk), and politicians, who inuence health more than the doctors, are rarely troubled by thoughts for the distant future.’ 3 For example, Osborne (1982, pp. 66-83) includes trachoma as one of 3 examples to illustrate the necessity of rede ning Indigenous health problems and re-assessing the delivery of health services.

1 Preface (continued)

The National Trachoma and Eye Health Program (NTEHP) lead by Professor Fred Hollows, his Associate Director Gordon Briscoe and Assistant Director Hugh Taylor during the period 1976-1979 was instrumental in raising broad public and political awareness of the poor health and living conditions of at that time, and in particular, their poor eye health (RACO 1980). Various key reports, programs, guidelines and policie s on Indigenous eye health followed the NTEHP (e.g. Mayers 1982; TFFNTEHP 1984; Bellear 1985; NAHSWP 1989, pp. 166-168; Taylor 1997; OATSIH 2001; Taylor et al 2004; CDHA 2004a; AHMC 2005a4; 2005b4; BHC 2006; CDHA 2006a).

Much past policy-making and implementation in Indigenous health by Australian governments appears to have been ad hoc, under-funded, often compartmentalised, uncoordinated, and not based on clear evidence5. The purpose of this project was to prepare a critical history of Indigenous eye health policy-making from the NTEHP to the present time. We have reviewed the relevant literature and interviewed 23 individuals who have played a signi cant role in Indigenous eye health policy-making during this 30-year period.

4 These are mainstream documents, but have identi ed Indigenous people as a vulnerable group. 5 Osborne (1982, p. 3) noted ‘Responsibility for Aboriginal health has shifted between federal and state authorities, charitable organisations and private enterprise medicine, without a satisfactory improvement in Aboriginal health.’ Cochrane once wrote (Cochrane & Blythe 1989, p. 201) ‘The methods of ophthalmologists seemed so beautifully quantitative, and there seemed so much that might be gained by the study of the aetiology and possible prevention of cataract and glaucoma.’

2 Summary

Trachoma is a major cause of visual impairment in Indigenous communities in Australia. It is the leading infectious cause of preventable blindness and occurs where people live in overcrowded conditions with limited access to water and health care. Trachoma is frequently passed from child-to-child and from child-to-mother within the family (WHO 2003a). Trachoma occurs in 46 countries. However, Australia is the only developed country in which it still occurs (Lansingh et al 2001).

Recent analyses of the contribution of vision loss to the overall health gap between Indigenous and non-Indigenous Australians indicates that for mainstream Australians vision loss resulted in 40,000 Disability-Adjusted Life Years (DALYs) or 2.7% of the total burden of disease (Taylor & Keee 2005). An informal analysis using the National Indigenous Eye Health Survey suggested vision loss in Indigenous Australians causes 2% of the total Indigenous health gap in DALYS or 7% of the non-fatal component of years lost to disability (Vos, T. 2010, pers. comm.).

It was not until 1981 that the Commonwealth Government started to put any emphasis on improved environmental living conditions for Indigenous Australians. Attaining such improved conditions remains a goal in Commonwealth Government policymaking and imp lementation in 2010.

Most of the Indigenous eye policy development has been Commonwealth Government funded. For this reason the review has provided a detailed Commonwealth Government policy analysis (to the exclusion of State and Territory policies) in an attempt to understand the context of Indigenous eye health policy development from 1980-2010 within the complex Commonwealth health portfolio.

The review draws attention to the p eaks and troughs in Indigenous eye health policy development and implementation, the characteristics of the peaks being dedicated change leaders such as Fred Hollows and Gordon Briscoe, and in more recent times international evidence-based research propounded by medical professionals and academics such as Hugh Taylor who have delivered and continue to deliver evidence-based Indigenous eye health research. The troughs have occurred during periods of mainstream and Ministerial apathy, shared departmental responsibility for Indigenous health and its location in 3 dierent organisations from 1984 to 1995.

Drawing on their considerable experience in Indigenous eye health a Royal Australian and New Zealand College of Ophthalmologists (RANZCO) respondent in the study considers that future policymaking requires input from individuals with a background of working in ru ral areas, an interest in Indigenous eye health, and having cultural awareness. Future lobbying/advocacy requires key high pro le, passionate people who can communicate, and policy implementation requires a correct mix of appropriate people, and interested persons in all levels of government, with leadership and mentoring qualities.

The National Trachoma and Eye Health Program (NTEHP) funded by the Commonwealth Department of Health (CDH) and administered by the Royal Australian College of Ophthalmologists (RACO), was initiated in 1975. From 1976-1979 under Fred Hollows’ strong and charismatic leadership the NTEHP examined and treated Indigenous people and non-Indigenous people throughout rural and remote Australia. The NTEHP was the rst large scale epidemiological survey and example of evidence-based public health care in Australia, and found the prevalence of blindness in Indigenous people to be 15/1000 compared with 1-4/1000 for non-Indigenous people, and that trachoma was a major contributing factor in 42% of Indigenous blindness (RACO 1980; Thomson 1984). To continue the provision of eye care after the NTEHP, State-based Trachoma and Eye Health Committees were established in 1980.

3

Summary Summary (continued)

Trachoma is a major cause of visual impairment in Indigenous communities in Australia. It is the leading In 1975 the Visiting Optometrists Scheme (VOS) was established. This was the forerunner of infectious cause of preventable blindness and occurs where people live in overcrowded conditions with Commonwealth Government programs which extended health services from large cities and towns to rural limited access to water and health care. Trachoma is frequently passed from child-to-child and from and remote areas and laid the basis for future Indigenous eye health initiatives. child-to-mother within the family (WHO 2003a). Trachoma occurs in 46 countries. However, Australia is the only developed country in which it still occurs (Lansingh et al 2001). Commonwealth Government initiatives during the 1970s form the basis of later policy development and implementation. For example, the rst Aboriginal Community Controlled Health Service (ACCHS) in Recent analyses of the contribution of vision loss to the overall health gap between Indigenous and Redfern Sydney in 1971 was followed by the establishment of the Commonwealth Department of non-Indigenous Australians indicates that for mainstream Australians vision loss resulted in 40,000 Aboriginal Aairs (CDAA) in 1973 and the National Aboriginal and Islander Health Organisation (NAIHO) Disability-Adjusted Life Years (DALYs) or 2.7% of the total burden of disease (Taylor & Keee 2005). An in 1976. The introduction of ACCHs (now numbering in excess of 140) provided a launching pad for informal analysis using the National Indigenous Eye Health Survey suggested vision loss in Indigenous Indigenous control and participation in health care policy, service delivery and nancial s upport (ANAO Australians causes 2% of the total Indigenous health gap in DALYS or 7% of the non-fatal component of 1998, p. 123). years lost to disability (Vos, T. 2010, pers. comm.). The National Aboriginal Community Controlled Health Organisation’s (NACCHO) replacement of NAIHO It was not until 1981 that the Commonwealth Government started to put any emphasis on improved in 1992 brought widespread recognition of the national importance of ACCHs in delivering primary health environmental living conditions for Indigenous Australians. Attaining such improved conditions remains care to Indigenous people. However, the goals of the ACCHSs, NACCHO and OATSIH (currently located a goal in Commonwealth Government policymaking and imp lementation in 2010. within the Commonwealth Department of Health and Ageing) have not always coincided, resulting in con icts in communication and coordination of policy implementation. Most of the Indigenous eye policy development has been Commonwealth Government funded. For this reason the review has provided a detailed Commonwealth Government policy analysis (to the exclusion of Although many encouraged Indigenous community control and self determination, this has not always State and Territory policies) in an attempt to understand the context of Indigenous eye health policy occurred in more recent times. Modern day bureaucrat respondents in the study involved in developing development from 1980-2010 within the complex Commonwealth health portfolio. Indigenous health policies indicate that improvements have been made towards greater community consultation, negotiation and feedback. Other respondents have noted that the requirement for extended The review draws attention to the p eaks and troughs in Indigenous eye health policy development and community consultation periods is an issue for governments and there needs to be a shift in power implementation, the characteristics of the peaks being dedicated change leaders such as Fred Hollows and between government and Indigenous people, as evidenced during the 2007 Northern Territory Emergency Gordon Briscoe, and in more recent times international evidence-based research propounded by Response. medical professionals and academics such as Hugh Taylor who have delivered and continue to deliver evidence-based Indigenous eye health research. The troughs have occurred during periods of The NTEHP Report (RACO 1980) had far-reaching eects in bringing the poor living conditions and poor mainstream and Ministerial apathy, shared departmental responsibility for Indigenous health and its health of Indigenous Australians to the attention of the wider Australian population and the media. location in 3 dierent organisations from 1984 to 1995. Howeve r the literature review and respondents’ perspectives of the 1980s and part of the 1990s record instability in Indigenous eye health policymaking, a reduction in eye health funding under the Aboriginal Drawing on their considerable experience in Indigenous eye health a Royal Australian and New Zealand and Torres Strait Islander Commission (ATSIC) thereby reducing community control, and competition for College of Ophthalmologists (RANZCO) respondent in the study considers that future policymaking funding for other problem areas. The 1989 National Aboriginal Health Strategy (NAHS) considered that requires input from individuals with a backgrou nd of working in rural areas, an interest in Indigenous Indigenous community control and participation found in ACCHSs was paramount to the physical eye health, and having cultural awareness. Future lobbying/advocacy requires key high pro le, wellbeing of the individual and the social, emotional, and cultural wellbeing of the whole community. passionate people who can communicate, and policy implementation requires a correct mix of However, the 1994 evaluation report of the implementation of the NAHS found little evidence that the appropriate people, and interested persons in all levels of government, with leadership and mentoring strategy had been adequately implemented as it was signi cantly under-funded. qualities. The literature review found that eye health service delivery to much of rural and remote Australia was The National Trachoma and Eye Health Program (NTEHP) funded by the Commonwealth limited and ad hoc in the mid 1990s, although several successful models for specialist eye service Department of Health (CDH) and administered by the Royal Australian College of Ophthalmologists (RACO), delivery to rural and remote communities had been developed. was initiated in 1975. From 1976-1979 under Fred Hollows’ strong and charismatic leadership the NTEHP examined and treated Indigenous people and non-Indigenous people throughout rural and Following the Review of Indigenous Eye Health (Taylor 1997) the remaining Trachoma and Eye Health remote Australia. The NTEHP was the rst large scale epidemiological survey and example of Committees of Queensland and the Northern Territory were replaced with regional eye evidence-based public health care in Australia, and found the prevalence of blindness in Indigenous health services. The implementation phase of the recommendations of the 1997 Review became known people to be 15/1000 compared with 1-4/1000 for non-Indigenous people, and that trachoma was a major as the National Aboriginal and Torres Strait Islander Eye Health Program, although we could nd no contributing factor in 42% of Indigenous blindness (RACO 1980; Thomson 1984). To continue the Commonwealth Government policy document with this title. Respondents considered the provision of eye care after the NTEHP, State-based Trachoma and Eye Health Committees were established implementation was piecemeal and recalled the diculties encountered in obtaining commitment in 1980. from the States and Territories, and a certain lack of expertise in policy implementation.

4 Summary (continued)

In 1975 the Visiting Optometrists Scheme (VOS) was established. This was the forerunner of Speci c implementation problems were Medicare’s reluctance in making a special allowance for Commonwealth Government programs which extended health services from large cities and towns to rural Indigenous people, and RACO’s delay in developing a nancing system for ophthalmologists who would and remote areas and laid the basis for future Indigenous eye health initiatives. visit remote areas, critical in delivering eye health services ‘on the ground’. In addition, it was found necessary to stop the $4 million tendering process for eye equipment, a reection of the many internal Commonwealth Government initiatives during the 1970s form the basis of later policy development and problems within OATSIH. implementation. For example, the rst Aboriginal Communit y Controlled Health Service (ACCHS) in Redfern Sydney in 1971 was followed by the establishment of the Commonwealth Department of The release of the 1997 Review of Indigenous Eye Health, the adoption of the WHO endorsed SAFE strategy Aboriginal Aairs (CDAA) in 1973 and the National Aboriginal and Islander Health Organisation (NAIHO) (the components of which are surgery, antibiotic treatment, facial cleanliness and environmental in 1976. The introduction of ACCHs (now numbering in excess of 140) provided a launching pad for changes) and the launch of Vision 2020 Australia (part of a global initiative of the WHO) in 2000 heralded Indigenous control and participation in health care policy, service delivery and nancial suppor t (ANAO another period of support for treating trachoma. Some Commonwealth Public Service respondents in 1998, p. 123). the study recalled their recent involvement in implementing elements of the SAFE strategy in Western Australia, Northern Terr itory and South Australia and the need to complete mapping exercises in The National Aboriginal Community Controlled Health Organisation’s (NACCHO) replacement of NAIHO Queensland and New South Wales. They commented that Indigenous eye health gains in importance when in 1992 brought widespread recognition of the national importance of ACCHs in delivering primary health referring to eye health data, and noted that areas such as eye health have lower priority and struggle care to Indigenous people. However, the goals of the ACCHSs, NACCHO and OATSIH (currently located in the overall Indigenous health agenda because of so many other competing issues. within the Commonwealth Department of Health and Ageing) have not always coincided, resulting in conicts in communication and coordination of policy implementation. The 2000 to 2010 period was characterised by a concerted Commonwealth Government eort in Indigenous health policymaking, building upon preceding policy work. However it was apparent from Although many encouraged Indigenous community control and self determination, this has not always the 2004 Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health occurred in more recent times. Modern day bureaucrat respondents in the study involved in developing Program (see Taylor et al 2004) that successive policy documents commissioned by the Commonwealth Indigenous health policies indicate that improvements have been made towards greater community contained similar recommendations which do not seem to be implemented. consultation, negotiation and feedback. Other respondents have noted that the re quirement for extended community consultation periods is an issue for governments and there needs to be a shift in power Indigenous disadvantage was the framework for the whole-of-government approach in 2004. between government and Indigenous people, as evidenced during the 2007 Northern Territory Emergency Resultant Indigenous eye health policymaking further re ned VOS and the Medical Specialist Outreach Response. Assistance Program (MSOAP) to ensure Indigenous people living in rural and remote areas had better access to these outreach programs. In 2005 a ‘National Framework for Action to Promote Eye Health and Prevent The NTEHP Report (RACO 1980) had far-reaching eects in bringing the poor living conditions and poor Avoidable Blindness and Vision Loss’ was developed. In 2006 ‘Guidelines for the public health health of Indigenous Australians to the attention of the wider Australian population and the media. management of trachoma in Australia’ were published, a National Trachoma Surveillance and Howeve r the literature review and respondents’ perspectives of the 1980s and part of the 1990s record Reporting Unit was established in Melbourne, and a feasibility report of an integrated regional eye instability in Indigenous eye health policymaking, a reduction in eye health funding under the Aboriginal service in Central Australia and planning for a Central Australia Integrated Eye Health Program were and Torres Strait Islander Commission (ATSIC) thereby reducing community control, and competition for developed. funding for other problem areas. The 1989 National Aboriginal Health Strategy (NAHS) considered that Indigenous community control and participation found in ACCHSs was paramount to the physical Following the 2007 Northern Territory Emergency Response (renamed Closing the Gap: NT), six targets wellbeing of the individual and the social, emotional, and cultural wellbeing of the whole community. were identi ed for Closing the Gap nationally across urban, rural and remote areas with $4.6 billion provided However, the 1994 evaluation report of the implementation of the NAHS found little evidence that the for Indige nous initiatives in early childhood development, health, and housing. The National Indigenous strategy had been adequately implemented as it was signi cantly under-funded. Health Equality Council was established in 2008 and a $1.578 billion National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes commenced in 2009-10. The CDHA improved access for The literature review found that eye health service delivery to much of rural and remote Australia was Indigenous people to the Medical Bene ts Scheme (MBS), Pharmaceutical Bene ts Schedule (PBS) limited and ad hoc in the mid 1990s, although several successful models for specialist eye service and mainstream health services. There was a relative increase in CDHA spending for Indigenous health delivery to rural and remote communities had been developed. programs over the period 1997-8 to 2008-9.

Following the Review of Indigenous Eye Health (Taylor 1997) the remaining Trachoma and Eye Health The respondents in this study indicated that they had been involved in much of the associated work of these Committees of Queensland South Australia and the Northern Territory were replaced with regional eye Indigenous health initiatives. In spite of the transfer from vertical (disease focused) to horizontal health services. The implementation phase of the recommendations of the 1997 Review became known (comprehensive primary health care) programs in 2004 there is ongoing debate around the vertical versus as the National Aboriginal and Torres Strait Islander Eye Health Program, although we could nd no horizontal model of delive ry, broad-based funding in the reform agenda, and the lack of emphasis on Commonwealth Government policy document with this title. Respondents considered the Indigenous eye health in Closing the Gap initiatives. implementation was piecemeal and recalled the diculties encountered in obtaining commitment from the States and Territories, and a certain lack of expertise in policy implementation.

5 Summary (continued)

Speci c implementation problems were Medicare’s reluctance in making a special allowance for The recurrent debate about policymaking and policy implementation suggests that a consistent focus on Indigenous people, and RACO’s delay in developing a nancing system for ophthalmologists who would Indigenous eye health that addresses system barriers for change in the face of many competing visit remote areas, critical in delivering eye health services ‘on the ground’. In addition, it was found challenges for attention in Indigenous health must be maintained. For example, a tightly focuses strategy to necessary to stop the $4 million tendering process for eye equipment, a reection of the many internal address diabetic retinopathy can bring about broader system change because such a strategy requires problems within OATSIH. properly co-ordinated eye services working with a well established and integrated primary health care centre having a chronic disease management program , improved nutrition, and patient education. Similar The release of the 1997 Review of Indigenous Eye Health, the adoption of the WHO endorsed SAFE strategy arguments can be mounted for a range of interventions. (the components of which are surgery, antibiotic treatment, facial cleanliness and environmental changes) and the launch of Vision 2020 Australia (part of a global initiative of the WHO) in 2000 heralded There is an urgent need for a revised policy framework that balances both the horizontal and vertical another period of support for treating trachoma. Some Commonwealth Public Service respondents in aspects of health care delivery. Much Indigenous health policy is built around big “Gap” issues. Rheumatic the study recalled their recent involvement in implementing elements of the SAFE strategy in Western heart disease and trachoma for example, are no longer problems in mainstream health, but are egregious Australia, Northern Territory and South Australia and the need to complete mapping exercises in examples of diseases that are morally unacceptable in their inequity because they can be relatively easily Queensland and New South Wales. They commented that Indigenous eye health gains in importance when addresses in Indigenous health. referring to eye health data, and noted that areas such as eye health have lower priority and struggle in the overall Indigenous health agenda because of so many other competing issues. The “best buys” economic argument in policymaking favoured by Commonwealth bureaucrats where funding is allocated in Indigenous health “buckets” of resources is a false argument. Policy choices should The 2000 to 2010 period was characterised by a concerted Commonwealth Government eort in not be made from one priority to another in Indigenous health, but comparisons made between Indigenous health policymaking, building upon preceding policy work. However it was apparent from Indigenous and non-Indigenous health issues. the 2004 Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program (see Taylor et al 2004) that successive policy documents commissioned by the Commonwealth There has been considerable similarity in the Indigenous eye health policies developed over the time contained similar recommendations which do not seem to be implemented. period of our study. What is lacking are not ideas for policy but the ability to have policies implemented. The following points summarised hey lessons (not necessarily in order of importance) from our ndings: Indigenous disadvantage was the framework for the whole-of-government approach in 2004. Resultant Indigenous eye health policymaking further re ned VOS and the Medical Specialist Outreach • Indigenous eye health programs should be integrated in Comprehensive Primar y Health Care Assistance Program (MSOAP) to ensure Indigenous people living in rural and remote areas had better access Services; to these outreach programs. In 2005 a ‘National Framework for Action to Promote Eye Health and Prevent • Indigenous eye health requires a champion(s) for lobbying and advocacy for action; Avoidable Blindness and Vision Loss’ was developed. In 2006 ‘Guidelines for the public health management of trachoma in Australia’ were published, a National Trachoma Surveillance and • The divide between Commonwealth, State, and Territory governments is in the context of Reporting Unit was established in Melbourne, and a feasibility report of an integrated regional eye Indigenous health; service in Central Australia and planning for a Central Australia Integrated Eye Health Program were • The attainment of improved environmental living conditions for Indigenous Australians; developed. • The need to reduce conicts between ACCHSs, NACCHO and OATSIH; • Widespread lack of expertise in policy implementation; Following the 2007 Northern Territory E mergency Response (renamed Closing the Gap: NT), six targets were identi ed for Closing the Gap nationally across urban, rural and remote areas with $4.6 billion provided • More ser ious involvement of Indigenous communities and their organisations from the outset for Indigenous initiatives in early childhood development, health, and housing. The National Indigenous in health policymaking, programs and implementation; Health Equality Council was established in 2008 and a $1.578 billion National Partnership Agreement on • Suitably quali ed Indigenous sta should occupy key decision making positions at the Closing the Gap in Indigenous Health Outcomes commenced in 2009-10. The CDHA improved access for highest level in OATSIH and the CDHA; Indigenous people to the Medical Bene ts Scheme (MBS), Pharmaceutical Bene ts Schedule (PBS) • ACCHSs play a key role in Indigenous health policymaking, programs and implementation; and mainstream health services. There was a relative increase in CDHA spending for Indigenous health programs over the period 1997-8 to 2008-9. • The need to elevate the relative importance of Indigenous eye health; • The recomme ndations of many reviews, reports and studies have not been implemented; The respondents in this study indicated that they had been involved in much of the associated work of these • Recognise what works and what doesn’t work, and change programs accordingly; Indigenous health initiatives. In spite of the transfer from vertical (disease focused) to horizontal (comprehensive primary health care) programs in 2004 there is ongoing debate around the vertical versus • Proper funding for eye health programs is essential; horizontal model of delivery, broad-based funding in the reform agenda, and the lack of emphasis on • There have been signi cant policy implementation failures for various reasons including: a very Indigenous eye health in Closing the Gap initiatives. slow bureaucracy often made worse by developments having to work together; workforce issues (failures in human capital); issues in Commonwealth and State/Territory relations; capturing resources ‘on the ground’; and • Indigenous eye health policymaking and implementations should be an exemplar for Indigenous health policymaking, programs and implementation.

6 Recommendations

The following recommendations are framed around the necessity for change in organisational culture of the policymaking and implementation organisations in adopting a true commitment to diversity in Indigenous policymaking environments. This requires strong, ongoing and visible leadership in support of that change:

• Maintain a consistent focus on Indigenous eye health that addresses the system barriers for change in the face of many competing challenges for attention in Indigenous health. • Instigate a more sophisticated policy framework in Indigenous health that simultaneously maintains a focus on system issues and develops targeted strategies for problems such as eye health. • Treat Indigenous eye care as urgent and a priority in government(s) policymaking and so reduce occurrences of repeating neglected recommendations in successive reports. • Develop co mprehensive primary care that integrates visiting specialist services including ophthalmologists and optometrists and which have strong links to regional hospital services. • Train Remote Area Nurses, Aboriginal Health Workers, and Rural General Practitioners working in areas where trachoma is endemic in the diagnosis and treatment of trachoma. • Provide adequate funding and training for proper co-ordination of visiting services and the patient pathway of care. • Develop an Information Network – a central point for an information/evidence base to be used to inuence policymaking and implementation in Indigenous eye health. • Place Aboriginal and Torres Strait Islander public servants in suciently high level positions in CDHA to provide leadership in organisational cultural change in Indigenous eye health policy making and imp lementation. • Revitalise the National Aboriginal Health Strategy focusing on community control and the

signi cant participation of ACCHSs addressing the physical wellbeing of the individual and the

social, emotional and cultural wellbeing of communities. • Introduce governance capacity building in communities and ACCHSs to better coordinate the delivery of Government programs. • Train Aboriginal and Torres Strait Islander people in ophthalmology, optometry and general eye health care.

7 List of Abbreviations

AAAC Australian Aboriginal A airs Council ABS Australian Bureau of Statistics ATSIC Aboriginal and Torres Strait Islander Commission ATSIHF Aboriginal and Torres Strait Islander Healing Foundation ATSIHPF Aboriginal and Torres Strait Islander Healt h Performance Framework ACCHS Aboriginal and Torres Strait Islander Community Controlled Health Service ADCA Aboriginal Development Commission Act ADC Aboriginal Development Commission AHDG Aboriginal Health Development Group AIH Australian Institute of Health AIHW Australian Institute of Health and Welfare AHW Aboriginal Health Worker AMS Aboriginal Medical Service ASSA Academy of the Social Sciences in Australia ACAC Anyinginyi Congress Aboriginal Corporation ANZSOG Australia and New Zealand School of Government ACT Australian Capital Territory AGDHA Australian Government Department of Health d an Ageing AGPS Australian Government Publishing Service AHPIB Aboriginal Health Project Information Bulletin AHMAC Australian Health Ministers Advisory Council AHMC Australian Health Ministers Conference AHRC Australian Human Rights Commission AIDA Australian Indigenous Doctors’ Association APY Anangu Yankunytjatjara ASGC-RA Australian Standard Geographical Classication-Remoteness Areas

BHC Bansc ott Health Consulting

CAAC Central Australian Aboriginal Congress CAIEHP Central Australia Integrated Eye Health Program CAEPR Centre for Aboriginal Economic Policy Research CERA Centre for Eye Research Australia CHETRE Centre for Health Equity Training, R esearch and Evaluation CTGSCIHE Close the Gap Steering Committee for Indigenous Health Equality CDAA Commonwealth Department of Aboriginal A airs CDCSH Commonwealth Department oof C mmunity Services and Health CDEET Commonwealth Department of Employment, Education and Training CDFaHCSIA Commonwealth Department of Families Housing Community Services and Indigenous A airs CDH Commonwealth Department of Health CDHA Commonwealth Department of Health and Ageing CDHAC Commonwealth Department of Health and Aged Care CDHFS Commonwealth Department of Health and Family Services CDHHCS Commonwealth Depart ment of Health, Housing and Community Services CDHHLGCS Commonwealth Department of Health, Housing, Local Government, and Community Services CDHSH Commonwealth Department of Human Services and Health CDTC Commonwealth Department of Transport and Construction CDNA Communicable Disease Network Australia CAG Community Advisory Group CHIP Community Housing Infrastructure Program CRCAH Cooperative Research Centre for Aboriginal Health CRCATSIH Cooperative Research Centre for Aboriginal and Torres Strait Islander Health CGRIS Coordinator-General for Remote Indigenous Services COAGRC Council of Australian Governments Reform Council

DALY Disability-Adjusted Life Years

EF Eye Foundation

FACS Family and Children’s Services FHF Fred Hollows Foundation

8 List of Abbreviations (continued)

HAHU Heads of Aboriginal and Torres Strait Islander Health Units HealthPACT Health Policy Advisory Committee of Technology HRSCAA House of Representatives Standing Committ ee on Aboriginal A airs HREOC Human Rights and Equal O pportunity Commission ICC Indigenous Coordination Centre IPAA Institute of Public Administration Australia ICEE International Centre for Eye Care Education IAPB International Agency for the Prevention of Blindness

LI Lowitja Institute

MBS Medical Benets Scheme MSAC Medical Services Advisory Committee MSOAP Medical Specialist Outreach Assistance Program MCFFR Ministerial Council for Federal Financial Relations

NACCHO National Aboriginal Community Controlled Health Organisation NAC National Aboriginal Conference NAIHO National Aboriginal and Islander Health Organisation NAHS National Aboriginal Health Strategy NAHS-EHP National Aboriginal Health Strategy – Environmental Health Program NAHSEC National Aboriginal Health Strategy Evaluation Committee NAHSWP National Aboriginal Health Strategy Working Party NATSIHA National Aboriginal and Torres Strait Islander Health Authority NATSIHC National Aboriginal and Torres S trait Islander Health Council NATSIEHP National Aboriginal and Torres Strait Islander Eye Health Program NACMH National Advisory Council on Mental Health NCEPH National Centre for Epidemiology and Population Health NEHDGP National Eye Health Demonstration Grants Program NHHRC National Health and Hospitals Reform Commission NHMRC National Health and Medical Research Council NIHEC National Indigenous Health Equality Council NIRA National Indigenous Reform Agreement (Closing the Gap) NPA National Partnership Agreement NSFATSIH National Strategic Framework for Aboriginal and Torres Strait Islander Health NTDHF Northern Territory Department of Health and Families NTEHC National Trachoma and Eye Health Conference NTEHP National Trachoma and Eye Health Program NTRC National Trachoma Review Committee NTSRU National Trachoma Surveillance and Reporting Unit NSW New South Wales NGO Non Government Organisation NT Northern Territory NTDHCS Northern Territory Department of Health and Community Services NTER Northern Territory Emergency Response n.d. Not Dated

OATSIH Oce for Aboriginal and Torres Strait Islander Health OATSIHS Oce for Aboriginal and Torres Strait Islander Health Services ORH Oce of Rural Health OAA Optometrists Association of Australia OA Oxfam Australia PAPL Parliamen t of Australia Parliamentary Library PBS Pharmaceutical Benets Schedule PHAA Public Health Association of Australia

QLD Queensland QTEHP Queensland Trachoma and Eye Health Program QTEHPC Queensland Trachoma and Eye Health Program Committee

9 List of Abbreviations (continued)

RACO Royal Australian College of Ophthalmologists RANZCO Royal Australian and New Zealand College of Ophthalmologists RCIADIC Royal Commission into Aboriginal Deaths in Custody

SES Senior Executive Service SRA Shared Responsibility Agreement SA South Australia SCRGSP Steering Committee for the Review of G overnment Service Provision SAFE Surgery, Antibiotic, Face, Environment

TFFNTEHP Task Force on the Future of the National Trach oma and Eye Health Program TAS Tasmania TCC The Cochrane Collaboration TSHS Torres Strait Health Strategy TSI&NPAHC Torres Strait Islander & Northern Peninsula Area Health Council

VIC Victoria VAHS Victorian Aboriginal Health Service VOS Visiting Optometrist Scheme V2020A Vision 2020 Australia

WA Western Australia WHA World Health Assembly WHO World Health Organisation

10 Timeline of Important Events

Timeline of important events/ policy making in the periods referred to by respondents in the study

1967-1968 Prime Minister John McEwen 1967 Referendum. 1968-1971 Prime Minister John Grey Gorton 1968 Commonwealth Oce of Aboriginal A airs established. 1971-1972 Prime Minister William McMahon 1971 First Community Controlled Aboriginal Medical Service at Redfern. 1972-1975 Prime Minister Edward Gough Whitlam 1973 Commonwealth Department of Aboriginal A airs established. 1975-1983 Prime Minister John Malcolm Fraser 1975 Visiting Optometrist Scheme commenced. 1976 National Aboriginal and Islander Health Organisation established. 1976-1979 Commonwealth funded National Trachoma and Eye Health Program, administered by the Royal College of Ophthalmologists. 1980 National Trachoma and Eye Health Program had far reaching e ects beyond eye health and other services it provided to rural and remote Australians. It brought attention to the poor health and living conditions of Indigenous people. 1981 Commonwealth invested in improving environmental living conditions for Indigenous communities. 1983-1991 Prime Minister Robert James Lee Hawke 1983-1985 Instability in Indigenous health policy making. Responsibility transferred from the Commonwealth Department of Health to the Commonwealth Department of Aboriginal A airs; Australian Institute of Health and Welfare was established and focused on health including Indigenous health data, critical for evidence-based policy making. 1984 Commonwealth Health portfolio lost responsibility for Indigenous health to Commonwealth Department of Aboriginal A airs. 1986 The National Aboriginal and Islander Health Organisation lost Commonwealth funding; the World Health Organisation progressed the diagnosis of trachoma worldwide; the Commonwealth Department of Aboriginal A airs funded Trachoma and Eye Health Committees in Queensland, South Australia and the Northern Territory. 1988 The Royal Commission into Aboriginal Deaths in Custody formed and had an impact on later policy making initiatives in Indigenous health and Indigenous a airs. 1989 The Commonwealth National Aboriginal Health Strategy responsible for whole of government comprehensive primary health care policymaking advances including the National Strategic Framework for Aboriginal and Torres Strait Islander Health. 1990 Commonwealth Department of Aboriginal A airs and Aboriginal Development Commission abolished. Replaced by Aboriginal and Torres Strait Islander Commission. 1991-1996 Prime Minister Paul John Keating 1991 Final Royal Commission into Aboriginal Deaths in Custody Report containing many health related recommendations. 1992 The National Aboriginal Community Controlled Health Organisation replaced the National Aboriginal and Islander Health Organisation with wide recognition of the national importance of Aboriginal Community Controlled Health Services. 1993 Torres Strait Health Strategy released. 1994 Evaluation of the National Aboriginal Health Strategy (implementation of Strategy underfunded and inadequate). 1995 Commonwealth Department of Health and Family Services took responsibility for Indigenous Health from the Aboriginal and Torres Strait Islander Commission. Eye health services in rural and remote Australia were limited and ad hoc. 11 Timeline of Important Events (continued)

1996- 2007 Prime Minister John Winston Howard 1996 Implementation report on the 1993 Torres Strait Health Strategy. 1996 National Aboriginal and Torres Strait Islander Health Council established. 1997 National Review of Indigenous Eye Health followed by the National Aboriginal and Torres Strait Islander Eye Health Program. 1997 Surgery, Antibiotic, Face, Environment (FACE) Strategy for Trachoma control endorsed by the World Health Organisation. Professor Taylor recommended this Strategy be adopted in Australia. 1997 Australian Health Ministers’ Conference endorsed set of national performance indicators and targets. 1997-1998 Increase in Commonwealth Department of Health and Ageing spending for Indigenous health programs. 1998 Framework Agreements for implementation of the 1997 National Review of Eye Health concluded. 1999 Review of National Aboriginal Health Strategy by National Aboriginal and Torres Strait Islander Health Council. 2000 Vision 2020 Australia launched. 2004 Shift to whole of government approach. The Council of Australian Governments addressed Indigenous disadvantage as the framework for whole of government approach. Indigenous eye health policy making followed this approach. The visiting Optometrist Scheme and the Medical Specialist Outreach Assistance Program rened for improved rural and remote access and Commonwealth Outreach Programs. 2004 Review of National Aboriginal and Torres Strait Islander Eye Health Program released and Commonwealth response to the Review. A number of initiatives on trachoma followed. 2004 The National Strategic Framework for Aboriginal and Torres Strait Islander Health published by the Australian Health Ministers Conference. Commonwealth implementation plans and Health Performance Framework reports released. Whole of government approach made mainstream agencies responsible for delivery of Indigenous specic services. 2005 Aboriginal and Torres Strait Islander Commission/Aboriginal and Torres Strait Islander Services abolished. 2005 Development of National Framework for Action to promote Indigenous health and prevent avoidable blindness and visions loss (5 key action areas). 2006 Guidelines for public health management of trachoma published. National Trachoma Surveillance and Report Unit established in Melbourne. 2006 Feasibility report on an integrated regional eye service in Central Australia and planning for this program. 2007-2010 Prime Minister Kevin Michael Rudd 2007 Northern Territory Emergency Response with considerable reporting. Renamed Closing the Gap: NT. 2008 Progress report on Implementation of the Framework. 2008 Council of Australian Governments agreed to six targets for Closing the Gap including health. 2008 National Indigenous Health Equality Council established. 2008-2009 Increase in Commonwealth Department of Health and Ageing spending for Indigenous Health Programs. 2009-2010 $1.578 billion National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes. 2010 Prime Minister Julia Eileen Gillard.

12 Introduction

1.0 INTRODUCTION

Dugdale (2008) reminds us that the health policy scene in Australia is large, complex6, vigorous, and populated by nine federal, state and territory governments, and numerous professional associations, charities and lobby groups - all with their own agendas. To comprehend this scene we need to understand the interests of the many players (Sax 1984). Tatz (1964, pp. 264-265) considered that there is no dividing line between policy (word formulation by politicians) and administration (execution of the will of the policy-framers) ‘provided that ultimate aims are broken down into sub-aims that are mutually consistent at a given point and are progressive over successive time’. Sax (1984, p. 236) observed that:

A health care administration’s goal could be summarised in the following words: to provide reasonable access to e ective care, supplied in a humane way, and to do so at a cost that society will accept. The fact is that no one can be condent that we know what to do and, even if we could agree on what to do, in many instances we would not know how to do it (Mechanic 1979:ix). Inevitably i n such cases, issues are resolved in “a political, ad hoc, learn-as-we-go fashion” (Stoelwinder 1983).

Whilst health outcomes and health system performance are generally good for most Australians (AIHW 2010a), the situation for Indigenous Australians is less optimistic (ABS & AIHW 2010), and successful major reform is slow in coming for Indigenous health policy-making (e.g. Anderson 2007; Dugdale & Arabena 2008). Aldrich et al (2007) have suggested that, at the federal level at least, politicians’ negative discourses about Indigenous Australians has permeated and shaped health policies such that the potential for health gain is limited by the very scope of the policies7.

Kaplan-Myrth (2004) completed a case-study in Victoria of the history of Indigenous eye health programs and policy processes from the time of the NTEHP to the present day in the context of exploring community and government relations in Indigenous health more broadly (Kaplan-Myrth 2007). Amongst other things, she felt that Indigenous eye health policy and politics had made signicant gains in the past 5 years, however (Kaplan-Myrth 2004, p. 34):

Despite government commitments to engage with Aboriginal communities and organisations as co ll aborators in health policy, eye health programs are developed through top-down processes. The outcomes of eye health programs in Aboriginal and Torres Strait Islander communities are inuenced by imbalances in decision-making power, professional interests, unsustainable infrastructure and resources, and lack of attention to regional di erences in the needs and capacities of those communities.

6 For example, Appendix A shows the advisory groups to the Australian Health Ministers Advisory Council (AHMAC), Australian Health Ministers Council (AHMC) and Council of Australian Governments (COAG) (OATSIH 2010, pers. comm., May). 7 In this regard, there has never been an Indigenous First Assistant Secretary of the Oce of Aboriginal and Torres Strait Islander Health since its establishment within the Commonwealth Department of Human Services and Health in 1995, despite the availability of capable and qualied Indigenous professionals (personal communication, Respondent 17).

13 1.0 INTRODUCTION Our history of Indigenous eye health policy-making in Australia over the past 30 years takes a di erent approach to that of Kaplan-Myrth (2004), but builds upon the ndings from her work. We hope that our Dugdale (2008) reminds us that the health policy scene in Australia is large, complex6, vigorous, and report will be helpful for future eye health policy-making, and that it may also provide useful insights populated by nine federal, state and territory governments, and numerous professional towards e ective system reform for Indigenous health policy-making and implementation more associations, charities and lobby groups - all with their own agendas. To comprehend this scene we need to generally. understand the interests of the many players (Sax 1984). Tatz (1964, pp. 264-265) considered that there is no dividing line be tween policy (word formulation by politicians) and administration The history o f Indigenous eye health in Australia is characterised by a unique combination of (execution of the will of the policy-framers) ‘provided that ultimate aims are broken down into sub-aims exceptional individuals (both Indigenous and non-Indigenous)8 at the community, government, health that are mutually consistent at a given point and are progressive over successive time’. Sax (1984, p. service, non-government, and research sector levels, together with a well documented record of 236) observed that: Indigenous eye health policy initiatives and challenges (refer to 6.0 Findings of this report).

2.0 BROAD AIM OF PROJECT

To document a critical history of Indigenous eye health policy-making in Australia from the time of the National Trachoma and Eye Health Program (RACO 1980) to the present time to assist e ective system reform in Indigenous eye health in the context of the Close the Gap policy environment of the Commonwealth Government and the Council of Australian Governments (CDHA 2007d; COAG 2008d; Whilst health outcomes and health system performance are generally good for most Australians (AIHW COAG 2009c; NATSIHC 2004a,b). 2010a), the situation for Indigenous Australians is less optimistic (ABS & AIHW 2010), and successful major reform is slow in coming for Indigenous health policy-making (e.g. Anderson 2007; Dugdale & Arabena 2.1 Speci c Aims 2008). Aldrich et al (2007) have suggested that, at the federal level at least, politicians’ negative discourses about Indigenous Australians has permeated and shaped health policies such that the potential To: for health gain is limited by the very scope of the policies7. 1. Describe the development of Indigenous eye health programs and policy from the NTEHP forward; Kapl an-Myrth (2004) completed a case-study in Victoria of the history of Indigenous eye health programs 2. Identify the key barriers and facilitators to e ective policy and program development; and and policy processes from the time of the NTEHP to the present day in the context of exploring 3. Identify strategies for future systems reform in this eld. community and government relations in Indigenous health more broadly (Kaplan-Myrth 2007). Amongst other things, she felt that Indigenous eye health policy and politics had made signicant gains in the past 3.0 KEY QUESTIONS 5 years, however (Kaplan-Myrth 2004, p. 34): These were: • What are the key Indigenous eye health reports and policies and their timelines from the NTEHP to the current time? • What was the wider context of health in Australia during this period? • Who were the key decision makers and organisations inuencing Indigenous eye health policies and programs during this period? • What factors and circumstances inuenced the actions of these key decision makers? and • How can an understanding of t he 4 questions above inform recommendations for e ective system reform?

6 For example, Appendix A shows the advisory groups to the Australian Health Ministers Advisory Council (AHMAC), Australian Health Ministers Council (AHMC) and Council of Australian Governments (COAG) (OATSIH 2010, pers. comm., May). 8 For example, Ida Mann, Frank Flynn, Fred Hollows, Hugh Taylor, Gordon Briscoe, Naomi Mayers, Sol Bellear, Jilpia Nappaljari Jones, Trevor Buzzacott. 7 In this regard, there has never been an Indigenous First Assistant Secretary of the Oce of Aboriginal and Torres Strait Islander Health since its establishment within the Commonwealth Department of Human Services and Health in 1995, despite the availability of capable and qualied Indigenous professionals (personal communication, Respondent 17).

14 Our history of Indigenous eye health policy-making in Australia over the past 30 years takes a di erent 4.0 OBJECTIVES approach to that of Kaplan-Myrth (2004), but builds upon the ndings from her work. We hope that our report will be helpful for future eye health policy-making, and that it may also provide useful insights These were: towards e ective system reform for Indigenous health policy-making and implementation more • To critically review key Indigenous eye health reports and other documents from the NTEHP to the generally. current time; • To review the wider context of health in Australia during this period; The history o f Indigenous eye health in Australia is characterised by a unique combination of • To identify a purposive sample of key decision makers in Indigenous eye health during this exceptional individuals (both Indigenous and non-Indigenous)8 at the community, government, health period; service, non-government, and research sector levels, together with a well documented record of • To design a face-to-face interview questionnaire that would provide useful information when Indigenous eye health policy initiatives and challenges (refer to 6.0 Findings of this report). used to interview the purposive sample of key decision makers; • To obtain ethical approval for this research; 2.0 BROAD AIM OF PROJECT • To undertake the interviews; • To collate and analyse the information from the interviews; To document a critical history of Indigenou s eye health policy-making in Australia from the time of the • To integrate the main ndings into a coherent form that covers the key questions of the study; National Trachoma and Eye Health Program (RACO 1980) to the present time to assist e ective system and reform in Indigenous eye health in the context of the Close the Gap policy environment of the • To prepare a report of the overall ndings. Commonwealth Government and the Council of Australian Governments (CDHA 2007d; COAG 2008d; COAG 2009c; NATSIHC 2004a,b). 5.0 METHODS

2.1 Speci c Aims The research design was a qualitative study based on a review of the literature and face-to-face interviews with a purposive sample of individuals involved in signicant Indigenous eye health To: policy-making over the past 31 years (i.e. 1980-2010). 1. Describe the development of Indige nous eye health programs and policy from the NTEHP forward; 5.1 Literature review 2. Identify the key barriers and facilitators to e ective policy and program development; and 3. Identify strategies for future systems reform in this eld. The literature review focussed on a number of key Commonwealth Government reports and other d ocuments related to Indigenous eye health policy-making and policies produced during the study period. 3.0 KEY QUESTIONS Interviewees drew our attention to a number of these documents. We have tried to place these specic d ocuments in a broader context of health policy in Australia where appropriate. Whilst State and These were: Territory government are responsible for the delivery of a signicant proportion of mainstream eye health • What are the key Indigenous eye health reports and policies and their timelines from the NTEHP services a signicant proportion of Indigenous specic services has been Commonwealth funded and to the current time? most of the policy development has occurred through initiatives at this level. • What was the wider context of health in Australia during this period? • Who were the key decision makers and organisations inuencing Indigenous eye health A bibliography of Indige nous eye health was prepared, and is shown in Appendix M. The published policies and programs during this period? literature for the bibliography was accessed through the databases Australian Indigenous HealthInfoNet+, ISI • What factors and circumstances inuenced the actions of these key decision makers? and Web of Knowledge++ and Informit+++.9 Search terms included Aboriginal eye health OR Torres Strait • How can an understanding of the 4 questions above inform recommendations for e ective Islander eye health OR Aboriginal eye health OR Indigenous eye health AND Australia* AND eye health system reform? policy* AND access OR utilization. Other search terms in cluded ocular, cataract, diabetic retinopathy, trachoma, ophthalmia, eye blight, water and environment*. A ‘snowballing’ technique was used with related articles being located from reference lists of accessed articles.

9 + The Australian Indigenous HealthInfoNet is a website that provides free access to information on Australian Indigenous health. Available at http://www.healthinfonet.ecu.edu.au/ Viewed 30 May 2010. 8 For example, Ida Mann, Frank Flynn, Fred Hollows, Hugh Taylor, Gordon Briscoe, Naomi Mayers, Sol Bellear, Jilpia Nappaljari Jones, Trevor Buzzacott. ++ ISI Web of Knowledge is an online academic database provided by Thomson Scientic's Institute for Scientic Information, which gives comprehensive access to databases including Current Contents Connect, Medline and Web of Science.

+++ Informit includes around 90 databases including several full text collections and many index/abstract databases. Most Informit databases are produced in Australia and contain mainly Australian content. Included are AIATSIS - Indigenous Studies Bibliography, ATSIhealth - Aboriginal and Torres Strait Islander Health Bibliography and RURAL - Rural and Remote Health Database. 15 5.2 Interviews 5.2.1 Research ethics

The study followed ethical guidelines for human research in Australia (NHMRC 2003, 2007), and was approved by The University of Melbourne Human Research Ethics Committee in December 2009. We prepared an Informed-consent form, an Information sheet about the project, and ensured the privacy and condentiality of the respondents using no names on the questionnaire sheets, conducting interviews priv ately, and storing the completed documents in a secure location accessible only by the researchers. The Informed-consent form is shown in Appendix B, and the Information sheet is shown in Appendix C.

5.2.2 Questionnaire

We designed a face-to-face questionnaire with 24 questions. The questionnaire had two parts (Part A: General questions - 5; Part B: Specic questions - 19). The 19 questions in Part B were grouped into 5 main themes: Your role in policy development; Policy processes in Indigenous health; Evidence and resources; Implementation issues; and Other possible issues. The questionnaire is shown in Appendix D.

5.2.3 Sample

We used purposive sampling (Schoeld & Jamieson 1999). The selected respondents were well known to the researchers, and were all senior professionals in various sectors related to Indigenous eye health policymaking and policies at various stages of their careers. The sectors covered were: government (federal, st ate and territory) – (7 interviews); university – (5 interviews); ACCHs – (2 interviews); politicians (federal) – (2 interviews); medical practitioners – (2 interviews); non-government organisations – (4 interviews); and a private organisation – (1 interview). The basic characteristics of the 23 respondents were: 6 females and 17 males; age range 34-71 years (mean and median 55 years); and 5 were Indigenous Australians.

5.2.4 Interviews

Twenty-one (21) of the interviews were face-to-face, one was by telephone, and one by written response to the questionnaire. The face-to-face interviews took about 1.5 hours to complete on average. A number of respondents preferred a less rigid format than the questionnaire shown in Appendix D, and we accommodated this ensuring that the 5 main themes were covered in the interview.

5.2.5 Analysis

The completed questionnaires were analysed using a matrix of the 5 themes, and reported in the ndings according to the research aims.

5.3 Writing of report

The authors wrote the report according to the Style Manual for Authors, Editors and Printers, Fifth edition (AGPS 1994), and Sixth edition (Snooks & Co 2002), using the Harvard system (aut hor-date) of referencing.

16 5.2 Interviews 6.0 FINDINGS – LITERATURE REVIEW 5.2.1 Research ethics 6.1 A history of Indigenous eye health policies within the context of broader key health policies in Indigenous and non-Indigenous Australia, 1980-2010 The study followed ethical guidelines for human research in Australia (NHMRC 2003, 2007), and was approved by The University of Melbourne Human Research Ethics Committee in December 2009. We 6.1.1 Introduction prepared an Informed-consent form, an Information sheet about the project, and ensured the privacy and condentiality of the respondents using no names on the questionnaire sheets, conducting interviews This history has been informed by the Australian Indigenous HealthInfoNet ‘Indigenous health priv ately, and storing the completed documents in a secure location accessible only by the policy timelines’ (AIHInfoNet 2008), a history of the Commonwealth’s role in Indigenous health researchers. The Informed-consent form is shown in Appendix B, and the Information sheet is shown in (Gardiner-Garden 1994; Anderson & Sanders 1996; ANAO 1998, p. 26, Appendix 2 pp. 122-134), and Appendix C. other documents where cited.

5.2.2 Questionnaire The Commonwealth has played an important role in Indigenous health for much of the period of our review, particularly from 1995 onwards. Reecting the complexity of the Commonwealth We designed a face-to-face questionnaire with 24 questions. The questionnaire had two parts (Part A: health portfolio during the period 1980-2010 (up to August), there have been 3 changes in the General questions - 5; Part B: Specic questions - 19). The 19 questions in Part B were grouped into 5 main political party in power at the Commonwealth level, 11 di erent Commonw ealth Ministers of themes: Your role in policy development; Policy processes in Indigenous health; Evidence and resources; Health (6 Liberal and 5 Labour), 9 di erent Heads of the Commonwealth Department of Health, and 7 Implementation issues; and Other possible issues. The questionnaire is shown in Appendix D. Department name changes from the original name ‘Commonwealth Department of Health’ (established in 1921) (CDHA 2007)10. The Gillard Government in Canberra called a federal election on 5.2.3 Sample 21 August 2010, and subsequently formed a minority government. We used purposive sampling (Schoeld & Jamieson 1999). The selected respondents were well known Since 1988, there have been 12 biennial health reports entitled ‘Aust ralia’s Health’ (AIHW 2010b), to the researchers, and were all senior professionals in various sectors related to Indigenous eye health and since 1997, 7 biennial reports entitled ‘The Health and Welfare of Australia’s Aboriginal and policymaking and policies at various stages of their careers. The sectors covered were: government Torres Strait Islander Peoples’ (ABS 2010) that have provided a reliable evidence base for Indigenous (federal, state and territory) – (7 interviews); university – (5 interviews); ACCHs – (2 interviews); health policymakers. politicians (federal) – (2 interviews); medical practitioners – (2 interviews); non-government organisations – (4 interviews); and a private organisation – (1 interview). The basic characteristics of the Before we start our history of Indigenous eye health policymaking, and Indigenous health 23 respondents were: 6 females and 17 males; age range 34-71 years (mean and median 55 years); and 5 policymaking more broadly, it is worth looking at briey the contribution of vision loss to the overall were Indigenous Australians. health gap between Indigenous and non-Indigenous Australians. The Commonwealth Department of Health and Aged Care (CDHAC) funded the University of Queensland in 2003 to develop for the rst 5.2.4 Interviews time burden of disease and injury estimates of fatal and non-fatal health outcomes for Indigenous Australians (Vos et al 2007, p.11). The ‘Indigenous health gap’ was calculated as ‘the Twenty-one (21) of the interviews were face-to-face, one was by telephone, and one by written response di erence between the burden of disease estimates for Indigenous Australians in 2003 and what to the questionnaire. The face-to-face interviews took about 1.5 hours to complete on average. A number these estimates would have been if Indigenous Australians had experienced mortality and disability at of respondents preferred a less rigid format than the questionnaire shown in Appendix D, and we the level of the total Australian population’ (Vos et al 2007, p. 1). The report from this study accommodated this ensuring that the 5 ma in themes were covered in the interview. provided estimates of the comparative import ance of over 170 diseases and injuries using Disability-Adjusted Life Years (DALYs)11. The study found that cardiovascular disease, diabetes, lung 5.2.5 Analysis disease and chronic respiratory disease accounted for half of the Indigenous health gap (Vos et al 2007, pp. 1-9). The completed questionnaires were analysed using a matrix of the 5 themes, and reported in the ndings according to the research aims.

5.3 Writing of report 10 The name, abbreviation, and year of change were: Commonwealth Department of Health (CDH) from 1921; The authors wrote the report according to the Style Manual for Authors, Editors and Printers, Fifth edition Commonwealth Department of Community Services and Health (CDCSH) 1987; Commonwealth Department of Health, Housing and Community Services (CDHHCS) 1991; Commonwealth Department of Health, Housing, Local Government and (AGPS 1994), and Sixth edition (Snooks & Co 2002), using the Harvard system (author-date) of referencing. Community Services (CDHHLGCS) 1993; Commonwealth Department of Human Services and Health (CDHSH) 1994; Commonwealth Department of Health and Family Services (CDHFS) 1996; Commonwealth Department of Health and Aged care (CDHAC) 1998; and Commonw ealth Department of Health and Ageing (CDHA) 2001 (CDHA 2007a). 11 The DALY is a health gap measure that compares the current health status of a population against an ‘ideal’ in which everyone lives into old age free from disease. DALY = YLL + YLD where YLL is the sum of years of life lost due to premature death, and YLD is the years lived with a disability (Vos et al 2007, pp. 14-15).

17 Vos et al (2007, pp. 49-50) noted that the burden from vision disorders was attributed to multiple underlying causes in the primary listing of diseases and injuries and thus not discussed explicitly in their report. The burden from total vision loss was divided among diabetic retinopathy, glaucoma, cataract, refraction errors, age-related macular degeneration, trachoma, and other causes of vision loss. Indigenous vision loss resulted mainly in non-fatal burden (73% non-fatal and 27% fatal), and Indigenous females experienced the majority of vision loss burden (61% compared to 39% for males). The burden from total vision loss in 2003 was estimated to be 859 DALYs (0.9% of total Indigenous DALYs), or 1.8 DALYs per 1000 Indigenous persons. The total vision loss DALY rate ratio between Indigenous and all Australians was 1.3 (Vos et al 2007, pp. 49-50)12. The inclusion in the burden of disease estimates of health conditions such as vision loss that do not have a signi cant mortality impact helps to ensure that these conditions are properly considered in the context of health policies and programs developed to close the large Indigenous health gap. Detailed analyses by the Centre for Eye Research Australia/Access Economics (CERA 2005 Taylor HR, Keee J. Investing in Sight: Strategic Interventions to Prevent Vision Loss in Australia, Eye Research Australia, 2005. ISBN 0-9757128-8-8) estimated for mainstream that vision loss resulted in 40,000 DALY or 2.7% of the total burden of disease. An informal analysis using the National Indigenous Eye Health Survey (NIEHS) suggested vision loss in Indigenous Australians caused 2% of the total Indigenous health gap in DALYS or 7% of the non-fatal component of years lost to disability (Vos 2010, personal communication).

The NIEHS conducted in 2008 found Indigenous children had much better vision than mainstream and had ve times less poor vision but by the time Indigenous adults reached the age of 40 and above, they had six times as much blindness. Some 94% of vision loss (less than 6/12) was unnecessary being either preventable or treatable, although a third had reported never having had an eye exam. This was the rst nationally represe ntative data on Indigenous eye health since the National Trachoma and Eye health program Report was published in 1980. Then they reported blindness was 10 times higher in Aboriginal people, but the majority of the blindness was due to corneal scarring and trachoma.

Prior to the publication of the ndings of the National Trachoma and Eye Health Program (RACO 1980), the starting point of our history, a number of important init iatives relevant to our story took place.

6.1.2 The period pre-1980

The Commonwealth Government established a new Oce of Aboriginal Aairs in 196813, and made speci c purpose grants to State Indigenous Health Units that became established in the early 1970s (ANAO 1998, p. 123; Franklin & White 1991, pp. 26-27; Saggers & Grey 1991b, 126). The rst Aboriginal Community Controlled Health Service (ACCHS) commenced in Redfern in Sydney in mid 1971 (Briscoe 1974; Foley 1982; Waterford 1982; Foley 1991), and one of us (JNJ) was the second nurse to work there (after Sally Goold) starting in late 1971 (Jones 2005)14. Fred Hollows actively participated in its establishment. The Central Australian Aboriginal Congress (CAAC) was fo unded on 9 June 1973 (Nathan & Leichleitner Japanangka 1983), and the Victorian Aboriginal Health Service (VAHS) was established in Fitzroy in 1974 (Nathan 1980). There are now more than 140 ACCHSs around Australia delivering health care to Indigenous Australians (NACCHO 2008a)15.

12 The DALY rate per 1000 persons for the total Australian population was age standardised to the total Indigenous Australian population, 2003 (Vos et al 2007, p. 50). 13 The year following the successful referendum giving the Commonwealth power to legislate for Indigenous Australians. 14 The location of the original clinic was 147 Regent Street, Redfern (Refer to Appendix E). 15 NACCHO has 8 aliates (except in ACT and Tasmania) with: 135 members and 30 associate members (NACCHO 2008c).

18 Vos et al (2007, pp. 49-50) noted that the burden from vision disorders was attributed to multiple A peak body for ACCHSs was proposed at a meeting in Albury in 1974, and in 1976 the National underlying causes in the primary listing of diseases and injuries and thus not discussed explicitly in their Aboriginal and Islander Health Organisation (NAIHO) was established (NACCHO 2008b). The report. The burden from total vision loss was divided among diabetic retinopathy, glaucoma, cataract, establishment of the early ACCHSs provided a launching pad for Indigenous control and refraction errors, age-related macular degeneration, trachoma, and other causes of vision loss. Indigenous participation in health care policy, service delivery, and nancial support (ANAO 1998, p. 123). The vision loss resulted mainly in non-fatal burden (73% non-fatal and 27% fatal), and Indigenous females Commonwealth Department of Aboriginal Aairs (CDAA) was established in 1973 after a change of experienced the majority of vision loss burden (61% compared to 39% for males). The burden from Commonwealth Government (ANAO 1998, p. 123; Franklin & White 1991, p. 27). total vision loss in 2003 was estimated to be 859 DALYs (0.9% of total Indigenous DALYs), or 1.8 DALYs per 1000 Indigenous persons. The total vision loss DALY rate ratio between Indigenous and all Australians was The Commonwealth Government assumed responsibility from the States16 for Indigenous policy, planning 1.3 (Vos et al 2007, pp. 49-50)12. The inclusion in the burden of disease estimates of health conditions such and coordination in 1973. This responsibility was shared between the C DAA and the Commonwealth as vision loss that do not have a signi cant mortality impact helps to ensure that these conditions are Department of Health (CDH) (Osborne 1982; Thomson 1985, pp. 36-37; ANAO 1998, p. 124). The role of the properly considered in the context of health policies and programs developed to close the large Indigenous Aboriginal Health Branch established in the CDH Public Health Division in 1973 was ‘to provide a central health gap. Detailed analyses by the Centre for Eye Research Australia/Access Economics (CERA 2005 Taylor advisory function and to develop a system for the collection, analysis and dissemination of information on HR, Keee J. Investing in Sight: Strategic Interventions to Prevent Vision Loss in Australia, Eye Research Australia, all aspects of Aboriginal health.’ (Thomson 1985, p. 36). A ten year National Plan for Aboriginal Healt h was 2005. ISBN 0-9757128-8-8) estimated for mainstream that vision loss resulted in 40,000 DALY or 2.7% of the approved by the Commonwealth Minister for Health in 1973 (Thomson 1985, pp.40-41; ANAO 1998, p. 124), total burden of disease. An informal analysis using the National Indigenous Eye Health Survey (NIEHS) although this was little more than a statement of intent to develop a plan (Thomson 1985, p. 33)17. However, suggested vision loss in Indigenous Australians caused 2% of the total Indigenous health gap in DALYS apart from a period in the late 1970s until 1984 - including the time of the NTEHP (RACO 1980) and two other or 7% of the non-fatal compon ent of years lost to disability (Vos 2010, personal key reports on Indigenous eye health (Mayers 198218; TFFNTEHP 1984) - the CDH did not take a direct role in communication). Indigenous health again until 1995 (Anderson & Sanders 1996; ANAO 1998, p. 125; Anderson 2007, p. 242)19.

The NIEHS conducted in 2008 found Indigenous children had much better vision than mainstream and had The National Trachoma and Eye Health Program, funded by the CDH and administered by the Royal ve times less poor vision but by the time Indigenous adults reached the age of 40 and above, they had Australian College of Ophthalmologists (RACO)20, was initiated in 1975, and over the period 1976-1979 six times as much blindness. Some 94% of vision loss (less than 6/12) was unnecessary being either examined (and treated where necessary) 62,116 Indigenous people and 38,616 non-Indigenous preventable or treatable, although a third had reported never having had an eye exam. This was the rst people throughout rural and remote Australia. The program found the prev alence of blindness in nationally representative data on Indigenous eye health since the National Trachoma and Eye health Indigenous people to be 15/1000 compared with 1-4/1000 for non-Indigenous people, and trachoma was a program Report was published in 1980. Then they reported blindness was 10 times higher in Aboriginal major contributing factor in 42% of Indigenous blindness. The prevalence of trachoma in the survey people, but the majority of the blindness was due to corneal scarring and trachoma. population was 38% in Indigenous people and 1.7% in non-Indigenous people (RACO 1980; Thomson 1984). The NTEHP was the rst large scale epidemiological survey and example of evidence-based public Prior to the publication of the ndings of the National Trachoma and Eye Health Program (RACO 1980), health care in Australia21. the starting point of our history, a number of important initiatives relevant to our story took place. The Commonw ealth universal health insurance scheme Medibank operated from 1975 to 1978, and its 6.1.2 The period pre-1980 replacement scheme Medicare was established in 1984 (PAPL 2005). The implementation of these important health policies provided the opportunity to improve the accessibility of health services to all The Commonwealth Government established a new Oce of Aboriginal Aairs in 196813, and made speci c Australians, including Indigenous Australians. The ‘Section 129A Scheme’ (named after the relevant part purpose grants to State Indigenous Health Units that became established in the early 1970s (ANAO 1998, of the Health Insurance Act 1973), usually calle d the “Visiting Optometrists Scheme”, became available in p. 123; Franklin & White 1991, pp. 26-27; Saggers & Grey 1991b, 126). The rst Aboriginal Community 1975, and provided payments to optometrists for providing optometric care to all Australians, including Controlled Health Serv ice (ACCHS) commenced in Redfern in Sydney in mid 1971 (Briscoe 1974; Foley 1982; Indigenous people, living in remote areas (OAA 2000b, p. 3)22. Remote was de ned as >50 km from the Waterford 1982; Foley 1991), and one of us (JNJ) was the second nurse to work there (after Sally Goold) nearest permanent optometric practice. starting in late 1971 (Jones 2005)14. Fred Hollows actively participated in its establishment. The Central Australian Aboriginal Congress (CAAC) was founded on 9 June 1973 (Nathan & Leichleitner Japanangka 1983), and the Victorian Aboriginal Health Service (VAHS) was established in Fitzroy in 1974 (Nathan 1980). There are now more than 140 ACCHSs around Australia delivering health care to Indigenous 16 Except in Queensland (Osborne 1982). 17 The 1973 National Plan for Aboriginal Health took up a single A4 sheet of paper. Australians (NACCHO 2008a)15. 18 This report was to the RACO, but CDH ocers (R. Packer, M. Wilson and G. Briscoe) were consulted. 19 The Commonwealth Government in 1984 consolidated Indigenous health programs in the CDAA, and the Aboriginal Health Branch in the CDH disappeared (ANAO 1998, p. 125). 20 RACO became the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) in November 2000 (RANZCO 2010).

21 Archibald Cochrane, a distinguished British epidemiologist, was an epidemiological mentor for Fred Hollows, and the in- 12 The DALY rate per 1000 persons for the total Australian population was age standardised to the total Indigenous Australian ternational organisation The Cochrane Collaboration is named in his honour (TCC 2010). Cochrane visited Australia during the population, 2003 (Vos et al 2007, p. 50). NTEHP (see Appendix F). 13 The year following the successful referendum giving the Commonwealth power to legislate for Indigenous Australians. 22 This scheme paid for the full cost of travel and half other costs incurred by optometrists visiting remote areas (OAA 2000b, p. 3). 14 The location of the original clinic was 147 Regent Street, Redfern (Refer to Appendix E). This scheme later became known as the Visiting Optometrists Scheme (VOS), and continues to the present time (see Appendix K of 15 NACCHO has 8 aliates (except in ACT and Tasmania) with: 135 members and 30 associate members (NACCHO 2008c). this report).

19 A peak body for ACCHSs was proposed at a meeting in Albury in 1974, and in 1976 the National The House of Representatives Standing Committee on Aboriginal Aairs (HRSCAA) report Aboriginal Health Aboriginal and Islander Health Organisation (NAIHO) was established (NACCHO 2008b). The was tabled in parliament in 1979 (HRSCAA 1979). This report provided a broad but limited picture of the establishment of the early ACCHSs provided a launching pad for Indigenous control and health of Indigenous people at this time, and made 15 recommendations and 24 suggestions to participation in health care policy, service delivery, and nancial support (ANAO 1998, p. 123). The improve Indigenous health. The recommendations related to the physical environment, culture, Commonwealth Department of Aboriginal Aairs (CDAA) was es tablished in 1973 after a change of health care programs, self-determinat ion, community development, Aboriginal involvement and Commonwealth Government (ANAO 1998, p. 123; Franklin & White 1991, p. 27). employment of non-Indigenous people in the health sector. None of the recommendations or suggestions focused on improving the low socio-economic circumstances of Indigenous people, The Commonwealth Government assumed responsibility from the States16 for Indigenous policy, planning and the recommendations had only partly been acted upon a decade later (NAHSWP 1989). and coordination in 1973. This responsibility was shared between the CDAA and the Commonwealth Department of Health (CDH) (Osborne 1982; Thomson 1985, pp. 36-37; ANAO 1998, p. 124). The role of the 6.1.3 The period 1980-1989 Aboriginal Health Branch established in the CDH Public Health Division in 1973 was ‘to provide a central advisory function and to develop a system for the collection, analysis and dissemination of information on 6.1.3.1 Indigenous eye health all aspects of Aboriginal health.’ (Thomson 1985, p. 36). A ten year National Plan for Aboriginal Health was approved by the Commonwealth Minister for Health in 1973 (Thomson 1985, pp.40-41; ANAO 1998, p. 124), The National Trachoma and Eye Health Program - Report of the Royal Australian College of although this was little more than a statement of intent to develop a plan (Thomson 1985, p. 33)17. However, Ophthalmologists was tabled in the Australian Senate on the 1st April 1980 (Senate Journal No. 164-01 April apart from a period in the late 1970s until 1984 - including the time of the NTEHP (RACO 1980) and two other 1980). The 5 aims of the public health program were challenging (RACO 1980, p. 185)23, and not all were key reports on Indigenous eye health (Mayers 198218; TFFNTEHP 1984) - the CDH did not take a direct role in achieved; however profound and far reaching eects on the communities visited, Aboriginal health, Indigenous health again until 1995 (Anderson & Sanders 1996; ANAO 1998, p. 125; Anderson 2007, p. 242)19. especially the work of Aboriginal Health Workers, the emergence of Aboriginal Medical Services and the people, Aboriginal and others, who worked on the project’ (Taylor 1997, p. 12)24. The The National Trachoma and Eye Health Program, funded by the CDH and administer ed by the Royal epidemiological ndings of poor Indigenous health (e.g. of ocular, ear, skin and nasal conditions Australian College of Ophthalmologists (RACO)20, was initiated in 1975, and over the period 1976-1979 and their association to environmental factors such as climate, housing, water access, sewerage examined (and treated where necessary) 62,116 Indigenous people and 38,616 non-Indigenous systems, nutritional status) were detailed and comprehensive (RACO 1980). The recommendations were people throughout rural and remote Australia. The program found the prevalence of blindness in wide ranging from improving living conditions to the provision of health services, including Indigenous people to be 15/1000 compared with 1-4/1000 for non-Indigenous people, and trachoma was a continuation of the NTEHP (RACO 1980, p. 183). The Commonwealth Government did commit to ensure major contributing factor in 42% of Indigenous blindness. The prevalence of trachoma in the survey improvements achieved by the NTEHP were maintained, and consultations on the need for development population was 38% in Indigenous people and 1.7% in non-Indigenous people (RACO 1980; Thomson of adequate on-going eye health care services took place between major State and Territory health 1984). The NTEHP was the rst large scale epidemiological survey and example of evidence-based public authorities and RACO (CDH 1981, p. 37). There were delays in developing a viable follow-up activity to the health care in Australia21. NTEHP; support was provided for continuation of on-going activities in Western Australia (WA), and renewed activities in New South Wales (NSW), Northern Territory (NT), South Australia (SA), Queensland The Commonwealth universal health insurance scheme Medibank operated from 1975 to 1978, and its (QLD) and Victoria (VIC) were planned. These activities were to be conducted on a State/Territory basis replacement scheme Medicare was established in 1984 (PAPL 2005). The implementation of these controlled by relevant committees containing a majority of Aboriginal representation (CDH 1982, p. 33). important health policies provided the opportunity to improve the accessibility of health services to all The Commonwealth budget allocation for the NTEHP in 1981-1982 was $480,000 (NTEHP 1982, p. 4). Australians, including Indigenous Australians. The ‘Section 129A Scheme’ (named after the relevant part of the Health Insurance Act 1973), usually called the “Visiting Optometrists Scheme”, became available in Ms Naomi Mayers25 was commissioned in November 1981 to prepare a report for the Trachoma & Eye 1975, and provided payments to optometrists for providing optometric care to all Australians, including Health Committee of RACO on an appropriate structure for an on-going NTEHP based on her Indigenous people, living in remote areas (OAA 2000b, p. 3)22. Remote was de ned as >50 km from the consultations in all mainland states, NT and Canberra (Mayers 1982)26. nearest permanent optometric practice.

23 These were: 1. The elimination of trachomatous blindness in Australia; 2. Presentation of the ocular health status of persons in rural Australia to interested agencies; 16 Except in Queensland (Osborne 1982). 3. Provision of immediate eye care to persons in rural Australia; 17 The 1973 National Plan for Aboriginal Health took up a single A4 sheet of paper. 4. Establishment of ongoing eye care programs for rural Australia; and 18 This report was to the RACO, but CDH ocers (R. Packer, M. Wilson and G. Briscoe) were consulted. 5. Training of medical, paramedical and interested lay persons in the skills necessary to provide eye care in rural 19 The Commonwealth Government in 1984 consolidated Indigenous health programs in the CDAA, and the Aboriginal Health Australia. Branch in the CDH disappeared (ANAO 1998, p. 125). 24 Brian & Smith (1999, p. 230) considered that: ‘Although NTEHP did not ful ll all its medical aims, it accomplished much on the 20 RACO became the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) in November 2000 (RANZCO 2010). wider agenda of Indigenous health, and led to the establishment of many community controlled health services in remote areas. 21 Archibald Cochrane, a distinguished British epidemiologist, was an epidemiological mentor for Fred Hollows, and the in- It was a project for its time, in contrast for instance to a recent project in which the army provided ophthalmic surgery in tents ternational organisation The Cochrane Collaboration is named in his honour (TCC 2010). C ochrane visited Australia during the pitched in the grounds of a public hospital, basically relieving the health authorities of the need to provide a sustained accessible NTEHP (see Appendix F). service. There is a consensus now that there is no longer a place for one-o medical specialist and hospital extravaganzas, and that 22 This scheme paid for the full cost of travel and half other costs incurred by optometrists visiting remote areas (OAA 2000b, p. 3). services must be provided on a continuing or regularly repeated basis, in or close to communities’. This scheme later became known as the Visiting Optometrists Scheme (VOS), and continues to the present time (see Appendix K of 25 Administratore of th Redfern Aboriginal Medical Service in 1982, and currently remains in that position. this report). 26 Ms Mayers had only a short time frame to complete this work, from 11th November 1981 to 22 January 1982 (Mayers 1982, p. 2).

20 The House of Representatives Standing Committee on Aboriginal Aairs (HRSCAA) report Aboriginal Health Mayers made 8 recommendations in her report, including: that Trachoma and Eye Health Programs was tabled in parliament in 1979 (HRSCAA 1979). This report provided a broad but limited picture of the (Committees) be re-established in each state and territory, and where appropriate, more than one in health of Indigenous people at this time, and made 15 recommendations and 24 suggestions to any jurisdiction; that a National Trachoma and Eye Health Committee be established; that Aboriginal improve Indigenous health. The recommendations related to the physical environment, culture, community control be applied to all the committees; that Professor Hollows be appointed to the position health care programs, self-determinat ion, community development, Aboriginal involvement and of consultant to the NTEHP; and that an Aboriginal National Co-ordinator be appointed for the NTEHP employment of non-Indigenous people in the health sector. None of the recommendations or directly responsible to RACO. In the conclusion to her report, Ms Mayers wrote (Mayers 1982, p. 10): suggestions focused on improving the low socio-economic circumstances of Indigenous people, and the recommendations had only partly been acted upon a decade later (NAHSWP 1989). ...I would personally like to remind members of this committee that Aboriginal people throughout Australia have high expectations of the programme beginning again soon, under meaningful Aboriginal guidance. I sincerely hope that members of this Committee and the College do not ignore those 6.1.3 The period 1980-1989 expectations, or this resume of Aboriginal advice. To do so would constitute a grave misjudgement on the part of the RACO and would lead to widespread disappointment in Black Australia. 6.1.3.1 Indigenous eye health RACO accepted the importance placed on meaningful Indigenous participation in the Mayers Report The National Trachoma and Eye Health Program - Repo rt of the Royal Australian College of recommendations, and in 1982 established State and Territory Trachoma and Eye Health Committees and Ophthalmologists was tabled in the Australian Senate on the 1st April 1980 (Senate Journal No. 164-01 April Secretariats, with decentralised treatment programs. CDH funding was channeled to the State/Territory 1980). The 5 aims of the public health program were challenging (RACO 1980, p. 185)23, and not all were Committees through RACO (CDH, 1983, p. 32). The committees had a majority of Indigenous members thus achieved; however profound and far reaching eects on the communities visited, Aboriginal health, enabling their direct involvement in policy-making as well as in the work place. RACO however did not especially the work of Aboriginal Health Workers, the emergence of Aboriginal Medical Services and appoint a national coordinator. Other members of these committees included State or Territory the people, Aboriginal and others, who worked on the project’ (Taylor 1997, p. 12)24. The Health Department representatives and RACO branch ophthalmologists (NTEHP 1982, p. 4; Taylor 1997, epidemiological ndings of poor Indigenous health (e.g. of ocular, ear, skin and nasal conditions pp. 12). This decentralised phase of the NTEHP did not seem to go well27. RACO withdrew its and their association to environmental factors such as climate, housing, water access, sewerage involvement as an agent for the Commonwealth Government in funding and co-ordinating the systems, nutritional status) were detailed and comprehensive (RACO 1980). The recommendations were State/Territory Trachoma and Eye Health Committees from December 1983 (CDH 1984, p. 38-39). wide ranging from improving living conditions to the provision of health services, including Commonwealth funding was cut o to a number of Trachoma Committees (Bellear 1985, p. 4.3), and continuation of the NTEHP (RACO 1980, p. 183). The Commonwealth Government did commit to ensure another report on the NTEHP was initiated by the CDH in late 1983 (TFFNTEHP 1984). improvements achieved by the NTEHP were maintained, and consultations on the need for development of adequate on-going eye health care services took place between major State and Territory health The Commonwealth Minister for Health, Dr N. Blewett, appointed a Task Force in late 1983 with wide authorities and RACO (CDH 1981, p. 37). There were delays in developing a viable follow-up activity to the terms of reference, namely ‘the formulation within a period of two months of a detailed proposal for NTEHP; support was provided for continuation of on-going activities in Western Australia (WA), and the future of the National Trachoma and Eye Health Program’ (TFFNTEHP 1984, p. 1). The Task Force renewed activities in New South Wales (NSW), Northern Territory (NT), South Australia (SA), Queensland included representatives from the CDH and NAIHO, and was chaired by the CDH. The NAIHO (QLD) and Victoria (VIC) were planned. These activities were to be conducted on a State/Territory basis representatives withdrew from the Task Force soon afterwards January 1984)28, and the report was controlled by relevant committees containing a majority of Aboriginal representation (CDH 1982, p. 33). completed by CDH sta2 9 in March 198430. The report outlined the current NTEHP program, the T he Commonwealth budget allocation for the NTEHP in 1981-1982 was $480,000 (NTEHP 1982, p. 4). requirements for a re-vitalised program, a range of options for achieving the requirements, and a recommended option. The recommended option was a national secretariat to oversee the development Ms Naomi Mayers25 was commissioned in November 1981 to prepare a report for the Trachoma & Eye of a revitalised NTEHP with a national eld program, national data collection and an epidemiological Health Committee of RACO on an appropriate structure for an on-going NTEHP based on her surveillance unit (TFFNTEHP 1984). However, Commonwealth Indigenous health programs (including the consultations in all mainland states, NT and Canberra (Mayers 1982)26. NTEHP) were transferred from the CDH to the CDAA in January 1985, and the Indigenous Health Branch within CDH disappeared (CDH 1985, p. 47; ANAO 1998, p. 125).

23 These were: 1. The elimination of trachomatous blindness in Australia; 2. Presentation of the ocular health status of persons in rural Australia to interested agencies; 3. Provision of immediate eye care to persons in rural Australia;

4. Establishment of ongoing eye care programs for rural Australia; and 27 One of us (JNJ) was asked in 1983 to be a member of the North Queensland Trachoma and Eye Health Program (QTEHP) 5. Training of medical, paramedical and interested lay persons in the skills necessary to provide eye care in rural Committee, and continued i n this role, together with Mary Butler as the Secretariat, from 1983-1995. This involved travel all around Australia. the Cape and the Torres Strait. We were not aware of the broader level diculties with the national program at that time, nor the 24 Brian & Smith (1999, p. 230) considered that: ‘Although NTEHP did not ful ll all its medical aims, it accomplished much on the serious concerns about the QTEHP expressed by Brian (1997, pp. 19-21). One example of a Northern Queensland eld report is wider agenda of Indigenous health, and led to the establishment of many community controlled health services in remote areas. shown in Appendix A of the Trachoma and Eye Health Report (Bellear 1985, pp. A.1-A.5). It was a project for its time, in contrast for instance to a recent project in which the army provided ophthalmic surgery in tents 28 A later report stated that NAIHO withdrew because ‘it was not satis ed that its policy of community-control was being correctly pitched in the grounds of a public hospital, basically relieving the health authorities of the need to provide a sustained accessible interpreted by other members of the Task Force’ (Bellear 1985, p. 4.2). service. There is a consensus now that there is no longer a place for one-o medical specialist and hospital extravaganzas, and that 29 These CDH sta were Mr G. Briscoe, Dr L. Smith, and Dr D. Stansbury, personal communication from respondent 20. services must be provided on a continuing or regularly repeated basis, in or close to communities’. 30 In Appendix IX of the report, there were two submissions from Professor Hollows - one a letter direct to Dr eBlew tt dated 25 Administrator of the Redfern Aboriginal Medical Service in 1982, and currently remains in that position. November 1983, and another dated December 1983. 26 Ms Mayers had only a short time frame to complete this work, from 11th November 1981 to 22 January 1982 (Mayers 1982, p. 2).

21 A third review of the NTEHP in as many years was requested in February 1985 by the Commonwealth Minister for Aboriginal Aairs, Mr Clyde Holding31 (CDAA 1986, p. 46), and a 128 page report was subsequently submitted to the Minister in October 1985 by the chairperson of the Review Committee, Mr Sol Bellear (Bellear 1985).

The three terms of reference of the Review Committee were to: 1. Report on the current ocular health status of Indigenous Australians; 2. Assess the eectiveness of existing Indigenous Trachoma and Eye Health Programs; and 3. Provide plans to eectively deal with trachoma and poor eye health among Indigenous Australians according to the ndings from terms of reference 1 & 2, recommendations from the RACO report (RACO 1980, pp. 180-183) and Commonwealth Government policy on Indigenous self-determination (Bellear 1985, p. 1.1). The review visited 20 communities in WA (5), NT (8) and SA (7), 17 of which had been previously screened during the 1976-1979 NTEHP (RACO 1980). A total of 2228 individuals were screened, of which 2008 were Indigenous. The review found the prevalence of both follicular trachoma and trachomatous conjunctival scarring in Indigenous people aged ≤19 years varied widely among the communities, but overall in the 17 communities previously screened there was a decrease in the pr evalence of follicular trachoma (especially severe follicular trachoma) and trachomatous conjunctival scarring compared with the screening in 1976-1979 (Bellear 1985, p. 2.2). The main recommendations of the review were that: there be an on-going NAIHO eye health, blindness prevention, and trachoma eradication program; that Commonwealth funding of the existing State/Territory trachoma committees be wound down; that Indigenous community-controlled health services and facilities be provided with more resources and their numbers be expanded; that NAIHO establish a National Eye Health, Blindness Prevention, and Trachoma Eradication Program Committee; that a Program Secretariat be established, initially in Sydney; and that the Program Committee be provided with resources for development of a public and family health strategy with particular emphasis on Homelands needs, and be represented on the Commonwealth Government’s Aboriginal Public Health Improvement Program’s Central and Regional Committees (Bellear 1985, p. 2.1). The report was distributed to Trachoma Committees, Indigenous Health Services, State and Territory Ministers for Aboriginal Aairs and Health, CDH, and other interested bodies, and all invited to comment (CDAA 1986, p. 46). Whilst the recommendations were strongly in support of Indigenous representation and central control, Taylor (1997 p. 13-14) observed that ‘There was little support for the recommendations. Concerns were expressed that the national secretariat would direct funds away from service delivery. Some Aboriginal Medical Services (AMSs) also considered that they were better placed to deliver co-ordinated eye health programs’. The Minister met with Professor Hollows, NAIHO, and State and Territory Trachoma Committees on 8th May 1986, and this meeting agreed that (CDAA 1986, p. 47):

• Surveillance, monitoring, and treatment of trachoma should be continued in order to eliminate trachomatous blindness in Australia and to improve generally the state of eye health in Aboriginal communities • The involvement of Aboriginals and Aboriginal Health Services should be emphasised in the delivery of anti-trachoma programs • Existing State and Territory Trachoma Committees should continue to function and • The Minister agreed to new arrangements under which all relevant groups would meet twice yearly to exchange information and advise the Minister on trachoma and eye health priorities and needs.

31 A NAIHO committee was appointed in December 1984 to oversee and manage the NTEHP. This committee, after discussions with the Minister of Aboriginal Aairs, formed the basis of a National Trachoma Review Committee (NTRC) which included representatives from CDAA, CDH, and Professor F C Hollows or his nominee (Bellear 1985, p. 4.6). Members of the NTRC were: Mr S Bellear – Chairperson (NAIHO), Ms N Mayers (NAIHO), Mr S Houston (NAIHO), Dr W Roberts (NAI HO), Professor FC Hollows or nominee, Dr D Stanbury (CDH), and Mr K Wisdom (CDAA) (Bellear 1985, p. B1).

22 A third review of the NTEHP in as many years was requested in February 1985 by the The CDAA Annual Report 1985-96 (CDAA 1986, p. 5) recorded under the Trachoma and eye health section Commonwealth Minister for Aboriginal Aairs, Mr Clyde Holding31 (CDAA 1986, p. 46), and a 128 page that: report was subsequently submitted to the Minister in October 1985 by the chairperson of the Review Following receipt in October 1985 of the report of the joint review of trachoma and eye health Committee, Mr Sol Bellear (Bellear 1985). programs the Minister agreed to the continuation of existing programs.

The three terms of reference of the Review Committee were to: 1. Report on the current ocular health Taylor (1997, p. 14) referred to these new arrangements as the ‘National Trachoma and Eye Health status of Indigenous Australians; 2. Assess the eectiveness of existing Indigenous Trachoma and Eye Conference’32, and observed that: Health Programs; and 3. Provide plans to eectively deal with trachoma and poor eye health among Indigenous Australians according to the ndings from terms of reference 1 & 2, recommendations from The National Conference endorsed goals and objectives of progressive improvement in Aboriginal the RACO report (RACO 1980, pp. 180-183) and Commonwealth Government policy on Indigenous health status, the provision of adequate eye health services, the maintenance of trachoma education self-determination (Bellear 1985, p. 1.1). The review visited 20 communities in WA (5), NT (8) and SA (7), programs and improvements in environmental health services. 17 of which had been previously screened during the 1976-1979 NTEHP (RACO 1980). A total of 2228 A number of signi cant events impacted upon Indigenous eye health policymaking and individuals were screened, of which 2008 were Indigenous. The review found the prevalence of both implementation during the period 1985 to 199033. NAIHO lost its CDAA funding from 31st December 198634 follicular trachoma and trachomatous conjunctival scarring in Indigenous people aged ≤19 years varied (CDAA 1987, pp. 60-61). A simple grading system for trachoma based on the presence or absence of 5 widely among the communities, but overall in the 17 communities previously screened there was a selected key signs was developed in 1987 (Taylor et al 1987; Thylefors et al 1987), and a version of this was decrease in the pr evalence of follicular trachoma (especially severe follicular trachoma) and trachomatous used in 3 workshops arranged by the National Trachoma and Eye Health Conference (NTEHC) to train conjunctival scarring compared with the screening in 1976-1979 (Bellear 1985, p. 2.2). The main Aboriginal Health Workers to identify trachoma (CDAA 1987, pp. 62)35. A sub-committee of the NTEHC recommendations of the review were that: there be an on-going NAIHO eye health, blindness developed a pilot survey to gauge the extent of diabetic retinopathy in Indigenous communities in prevention, and trachoma eradication program; that Commonwealth funding of the existing Queensland and South Australia, and interim results indicated that suitably trained AHWs could use a State/Territory trachoma committees be wound down; that Indigenous commun-ity controlled health portable camera as a useful diagnostic tool to detect blinding retinopathy in remote areas (CDAA 1990, services and facilities be provided with more resources and their numbers be expanded; that NAIHO pp. 37). The CDAA continued to fund Trachoma and Eye Health Committees in QLD,, SA and the NT (CDAA establish a National Eye Health, Blindness Prevention, and Trachoma Eradication Program Committee; that 1989, pp. 87-88). a Program Secretariat be established, initially in Sydney; and that the Program Committee be provided with resources for development of a public and family health strategy with particular emphasis on A meeting in December 1987 between the Minister for Aboriginal Aairs and other Commonwealth, State Homelands needs, and be represented on the Commonwealth Government’s Aboriginal Public Health and Northern Territory Ministers responsible for Aboriginal Aairs and Health agreed to a co-ordinated Improvement Program’s Central and Regional Committees (Bellear 1985, p. 2.1). The report was distributed strategy to improve Indigenous health, and established a working party to develop a National Aboriginal to Trachoma Committees, Indigenous Health Services, State and Territory Ministers for Aboriginal Aairs Health Strategy (NAHS)36. and Health, CDH, and other interested bodies, and all invited to comment (CDAA 1986, p. 46). Whilst the recommendations were strongly in support of Indigenous representation and central control, Taylor (1997 p. 13-14) observed that ‘There was little support for the recommendations. Concerns were expressed that the national secretariat would direct funds away from service delivery. Some Aboriginal Medical Services (AMSs) also considered that they were better placed to deliver co-ordinated eye health programs’. The Minister met with Professor Hollows, NAIHO, and State and Territ ory Trachoma Committees on 8th May 1986, and this meeting agreed that (CDAA 1986, p. 47):

• Surveillance, monitoring, and treatment of trachoma should be continued in order to eliminate trachomatous blindness in Australia and to improve generally the state of eye health in Aboriginal communities • The involvement of Aboriginals and Aboriginal Health Services should be emphasised in the delivery of anti-trachoma programs 32 This term was used in the CDAA Annual Report for 1987-88 (CDAA 1988, p. 49). • E xisting State and Territory Trachoma Committees should continue to function 33 At a high level impacting on Indigenous health policymaking more generally, there were 3 changes of Commonwealth Minister and of Aboriginal Aairs (C. Holding 1983-1987; G. Hand 1987-1990; R. Tickner 1990-1991), 2 changes of Secretary of the CDAA (Charles • The Minister agreed to new arrangements under which all relevant groups would meet twice yearly to Perkins resigned in 1988 and was succeeded by W Gray), and the CDAA was replaced on 6th March 1990 by the Aboriginal and Torres Strait Islander Commission (ATSIC). exchange information and advise the Minister on trachoma and eye health priorities and needs. 34 The Minister ceased funding NAIHO following an unsatisfactory audit, and instructed that ‘from 1 January 1987, Aboriginal Health Services could elect to pay a voluntary annual aliation fee of up to $3,000 each to NAIHO, so that an administratively restructured NAIHO could undertake national Aboriginal health projects on a contract basis as required’ (CDAA 1987, pp. 60-61). In 1992, NAIHO 31 A NAIHO committee was appointed in December 1984 to oversee and manage the NTEHP. This committee, after discussions changed its name to NACCHO (NACCHO 2008b). with the Minister of Aboriginal Aairs, formed the basis of a National Trachoma Review Committee (NTRC) which included 35 Workshops were held in Kununurra and Wiluna in WA in April 1987, Thursday Island in June 1988, and Bourke in NSW in 1989 representatives from CDAA, CDH, and Professor F C Hollows or his nominee (Bellear 1985, p. 4.6). Members of the NTRC were: Mr funded by CDAA. The students were mainly Aboriginal Health Workers, and as much detail was provided as would be to S Bellear – Chairperson (NAIHO), Ms N Mayers (NAIHO), Mr S Houston (NAIHO), Dr W Roberts (NAIHO), Professor FC Hollows or undergraduate medical classes, and for the majority of participants, this level was appropriate. Similar courses were run by nominee, Dr D Stanbury (CDH), and Mr K Wisdom (CDAA) (Bellear 1985, p. B1). Aboriginal Medical Services in Perth, Yalata, and Santa Teresa (Brian et al 1990). 36 The working party had 19 members chaired by Ms Naomi Mayers, and had 6 terms of reference (CDAA 1988, p. 46).

23 The ndings of the working party were published in March 1989 (NAHSWP 1989)37, and another meeting of Ministers held in March 1989 agreed that the NAHS report be assessed for implementation by a devel opment group (CDAA 1989, p. 35)38. The NAHS Report included 3 goals and 7 strategies for Indigenous eye health (NAHSWP 1989, pp. 166-167). The goals focused on trachoma and diabetic retinopathy and were:

• To reduce the incidence of trachoma amongst Indigenous communities; • To introduce public health measures aimed at preventing trachoma amongst Indigenous people; and • To reduce the incidence of diabetes amongst Indigenous people.

The speci c eye health strategies were:

• Eye health screening and treatment programs should be introduced into those States not currently served by State Trachoma and Eye Health Committees (e.g. NSW, VIC, WA); • Eye health programs should be introduced at the primary level of care, through Indigenous health services; • Transfer of skills to Indigenous health workers is essential; • Intra-ocular lens implant surgery (i.e. new cataract surgery) should be made available free to Indigenous people requiring this treatment; • Public health measures to improve living conditions, e.g. water supply, must be introduced as a matter of urgency; • Health awarene ss and education programs which focus on nutrition, hygiene and eye care should be developed and introduced to all at-risk people; and • There is a need to integrate primary health care services with specialist trachoma and ocular programs.

6.1.3.2 Broader signi cant policy events

A number of other key Indigenous health policy events that could impact on Indigenous eye health occurred during this period. They included: The establishme nt in 1980 of the Aboriginal Development Commission (ADC), a Commonwealth Statutory Authority with functions to advance social and economic development of Indigenous people (ADCA 1980).

A Program E ectiveness Review Report was prepared in 1980 within the Commonwealth Department of Prime Minister and Cabinet, and considered Indigenous involvement in Indigenous health policy development, the introduction of speci c health initiatives, and the existing arrangements for funding and administration of Indigenous health. This review recommended, among other things, consolidation of Commonwealth health functions in the Commonwealth Department of Health (PER 1980; Thomson 1985, p. 36-37; Anderson & Sanders 1996; Anderson 1997, p. 120; AIHInfoNet 2008, Endnotes ii & iii).

37 A number of authors briey explained the NAHS at the time, targeting several ‘audiences’ (e.g. Houston 1989; McMichael 1989). An in-depth analysis ofe th NAHS came later (Anderson 1997, pp. 119-135). 38 The development group comprised Ms Naomi Mayers and one representative from CDAA, CDH, and each State and Territory government. The development group met in May, July, October and November 1989, and subsequently recommended action in 7 broad areas (CDAA 1990, p. 35). The meeting of Ministers also resolved to take urgent action in: • Environmental health matters • Education and training p rograms for Aboriginal and Torres Strait Islander health workers • Development of a uniform system of Aboriginal and Torres Strait Islander statistics

24 The ndings of the working party were published in March 1989 (NAHSWP 1989)37, and another meeting An Aboriginal Public Health Improvement Program was started in 1981 by the Commonwealth of Ministers held in March 1989 agreed that the NAHS report be assessed for implementation Government in response to recommendations from the HRSCAA report on Aboriginal Health (HRSCAA by a development group (CDAA 1989, p. 35)38. The NAHS Report included 3 goals and 7 strategies for 1979). This program focused on environmental living conditions (water supply, sewage disposal systems, Indigenous eye health (NAHSWP 1989, pp. 166-167). The goals focused on trachoma and diabetic and power supplies), and was administered by CDAA (Thomson 1985, pp. 22-23). retinopathy and were: Responsibility for all Commonwealth Indigenous health programs was consolidated within the CDAA in • To reduce the incidence of trachoma amongst Indigenous communities; 198439 (ANAO 1998, p. 26)40. This was despite earlier recommendations from Gray (1976, p. 38)41 and the • To introduce public health measures aimed at preventing trachoma amongst Indigenous people; Program E ectiveness Review Report (CDPMC 1980) to the opposite. Thomson (1985, p. 37) observed that and given the Commonwealth’s failure to co-ordinate its own eorts it was not surprising that it had little • To reduce the incidence of diabetes amongst Indigenous people. success in co-ordinating non-Commonwealth eorts in Indigenous health.

The speci c eye health strategies were: The Australian Institute of Health (AIH) was established within the CDH in September 1984,42 and was responsible for the development of Indigenous health statistics. The AIH became an Australian Government • Eye health screening and treatment programs should be introduced into those States not statutory authority in 1987, and published its rst biennial report in 1988 (AIH 1988)43. currently served by State Trachoma and Eye Health Committees (e.g. NSW, VIC, WA); • Eye health programs should be introduced at the primary level of care, through The National Aboriginal Conference (NAC) was terminated as from 30 June 1985 by the Minister for Indigenous health services; Aboriginal Aairs, Mr C. Holding (AHR 1985, p. 1266). This was done on advice that the NAC was not • Transfer of skills to Indigenous health workers is essential; adequately representative of Indigenous opinions and aspirations44. • Intra-ocular lens implant surgery (i.e. new cataract surgery) should be made available free to Indigenous people requiring this treatment; A National Aboriginal Health Strategy Working Party (NAHSWP) was established in 1987, and its nal report • Public health measures to improve living conditions, e.g. water supply, must be introduced as a prepared in March 1989 (NAHSWP 1989). An Aboriginal Health Development Group (AHDG) and a matter of urgency; Community Advisory Group (CAG) were established in 1989 to advise on implementation of the NAHSWP • Health awarenes s and education programs which focus on nutrition, hygiene and eye care should report (Gardiner-Garden 1994; Anderson 1997, p. 125). be developed and introduced to all at-risk people; and • There is a need to integrate primary health care services with specialist trachoma and ocular The Royal Commission into Aboriginal Deaths in Custody (RCIADIC) was formed in 1988, and the nal programs. report with 339 recommendations was signed on 15 April 1991 (NAA 2008).

6.1.3.2 Broader signi cant policy events

A number of other key Indigenous health policy events that could impact on Indigenous eye health occurred during this period. They included: The establishme nt in 1980 of the Aboriginal Development Commission (ADC), a Commonwealth Statutory Authority with functions to advance social and economic development of Indigenous people (ADCA 1980).

A Program E ectiveness Review Report was prepared in 1980 within the Commonwealth Department of Prime Minister and Cabinet, and considered Indigenous involvement in Indigenous health policy development, the introduction of speci c health initiatives, and the existing arrangements for funding and administration of Indigenous health. This review recommended, among other things, consolidation of Commonwealth health functions in the Commonwealth Department of Health (PER 1980; Thomson 1985, p. 36-37; Anderson & Sanders 1996; Anderson 1997, p. 120; AIHInfoNet 2008, Endnotes ii & iii). 39 The 1984-85 Commonwealth appropriation for speci cally Aboriginal health programs was $43.231m, with $37.793m administered through the CDAA, and $5.438m administered through the CDH (Thomson 1985, p. 17). 40 Osborne (1982, p. 114) had earlier been of the opinion that ‘The Commonwealth Department of Aboriginal Aairs must be the central planning authority for an eective national Aboriginal health care policy’. 37 A number of authors briey explained the NAHS at the time, targeting several ‘audiences’ (e.g. Hous ton 1989; McMichael 1989). 41 Gray (1976, p. 38) wrote that ‘ long term direction of the AMSs, if they continue to receive Commonwealth nancial support, be An in-depth analysis of the NAHS came later (Anderson 1997, pp. 119-135). evaluated, including alternatives: 1. that they be fully nanced by the Department of Health with functions similar to community 38 The development group comprised Ms Naomi Mayers and one representative from CDAA, CDH, and each State and Territory health centres but nanced by direct grant under a separate appropriation. or 2. that they remain separate, predominantly clinical, government. The development group met in May, July, October and November 1989, and subsequently recommended bulk billing under Medibank wherever possible. action in 7 broad areas (CDAA 1990, p. 35). The meeting of Ministers also resolved to take urgent action in: 42 The rst Director of the AIH was Dr John Deeble (CDH 1985, p. 43). • Environmen tal health matters 43 The AIH was renamed the Australian Institute of Health and Welfare (AIHW) in 1991 to reect its wider role involving the collection • Education and training programs for Aboriginal and Torres Strait Islander health workers of data about disabilities and children’s services. • Development of a uniform system of Aboriginal and Torres Strait Islander statistics 44 This advice was from a report prepared by Coombs (1984).

25 6.1.3.3 Summary

The period prior to 1980 saw a number of important developments take place in Australia at the Commonwealth level that have had an important impact on Indigenous health policymaking to the current time. The Commonwealth set up a new Oce of Aboriginal Aairs in 1968, following the 1967 referendum. The rst community-controlled AMS started in 1971 at Redfern in Sydney, and the CDAA was established in 1973. NAIHO was established in 1976, and helped mobilise the Indigenous community-controlled health sector. Initially, the CDAA and the CDH shared responsibility for Indigenous health. Medibank operated from 1975-1978, and the Commonwealth funded NTEHP ran from 1976-1979, and was administered by RACO. The Visiting Optometrist s Scheme (VOS) started in 1975, and was a forerunner of government programs aimed at extending health services out from the large cities and towns into rural and remote areas where many Indigenous people lived.

From 1980 onwards, the NTEHP had far-reaching eects beyond the eye health and other services it provided to rural and remote Australians. The poor living conditions and poor health of Indigenous people at that time was eectively brought to the attention of the wider Australian population and media by the NTEHP. However, the NTEHP was followed by a period of Indigenous eye health policymaking instability, with three reviews in nearly as many years. The Commonwealth transferred responsibility for Indigenous health between the CDH and CDAA at this time which contributed to policymaking instability. The Commonwealth started to invest more seriously in improved environmental living conditions for Indigenous communities in 1981.

NAIHO lost its Commonwealth funding in 1986, a temporary setback for the growing number of advocates for community control in Indigenous health. The World Health Organisation (WHO) progressed the diagnosis of trachoma worldwide through its ve key signs, and the CDAA funded the Trachoma and Eye Health Committees in QLD, SA, and NT.

The AIH, later renamed the Australian Institute of Health and Welfare (AIHW), was established in 1984 as the second Commonwealth agency responsible for data consolidation and analysis, but focused on health data, including Indigenous health – critical for evidence-based policymaking. A dialogue continued during this period about whether Commonwealth Indigenous health programs should be consolidated within the CDAA or the CDH.

A Commonwealth funded working party develop ed the rst NAHS in 1989, and, although biomedical in nature, the NAHS was later a guide for a number of signi cant whole-of-government comprehensive primary health care policymaking advances, including the National Strategic Framework for Aboriginal and Torres Strait Islander Health. The RCIADIC formed in 1988, and its subsequent ndings had an important impact on later policymaking initiatives in Indigenous health and more broadly in Indigenous aairs.

6.1.4 The period 1990-1999

6.1.4.1 Indigenous eye health

The Aboriginal and Torres Strait Islander Commission Act was proclaimed on 7th February 1990, and ATSIC commenced on the 5th March 1990, replacing the CDAA and the ADC (ATSIC 1991, p. xiii). ATSIC inherited the former CDAA role of funding and administration of all Commonwealth programs relating to Indigenous health, including eye health. ATSIC responsibility for Indigenous health continued until the Commonwealth Department of Health and Family Services (CDHFS) assumed responsibility from the 1st

26 6.1.3.3 Summary July 1995 (ATSIC 1995, p. 115)45. Throughout the period ATSIC was responsible for Indigenous health (i.e. 5th March 1990 to 30th June 1995), the Indigenous controlled Trachoma and Eye Health Committees in The period prior to 1980 saw a number of important developments take place in Australia at the QLD, SA, and NT continued to be funded, and community screening for trachoma made up a large Commonwealth level that have had an important impact on Indigenous health policymaking to the current component of their workload (ATSIC 1990; ATSIC 1991: ATSIC 1992; ATSIC 1993a,b; ATSIC 1994)46. time. The Commonwealth set up a new Oce of Aboriginal Aairs in 1968, following the 1967 However, few specialist eye care services existed in these jurisdictions outside the work of the committees referendum. The rst community-controlled AMS started in 1971 at Redfern in Sydney, and the CDAA (Taylor 1997, p. 28). Specialist eye health services in the other jurisdictions of WA, Tasmania (TAS), NSW, was established in 1973. NAIHO was e stablished in 1976, and helped mobilise the Indigenous and VIC operated on an ad hoc basis with no nationally-based and little state-based co-ordination or community-controlled health sector. Initially, the CDAA and the CDH shared responsibility for assessment of need against service delivery, and a mix of public and private services (Taylor 1997, pp. 15, 28). Indigenous health. Medibank operated from 1975-1978, and the Commonwealth funded NTEHP ran from The Austr alian army undertook exercises to reduce a backlog of eye surgery cases in Alice Springs in 1994, 1976-1979, and was administered by RACO. The Visiting Optometrists Scheme (VOS) started in 1975, Katherine in 1995, and Tiwi Islands and Maningrida in 1996. However, these exercises could not provide and was a forerunner of government programs aimed at extending health services out from the large on-going or routine care (Taylor 1997, p. 36-37). cities and towns into rural and remote areas where many Indigenous people lived. The Fred Hollows Foundation (FHF) was ocially launched on 3 September 1992 (Lynskey 2002, p. xi) 47. For From 1980 onwards, the NTEHP had far-reaching eects beyond the eye health and other services it the rst ten years, the FHF did core work on eye health and blindness in less developed count ries (FHF provided to rural and remote Australians. The poor living conditions and poor health of Indigenous people 2002), while in Australia, it took a broader approach, developing a model of specialist eye service delivery to at that time was eectively brought to the attention of the wider Australian population and media by the rural and remote communities of Far North Queensland (FHF 1996, p. 13; Brian 199748), advocacy for NTEHP. However, the NTEHP was followed by a period of Indigenous eye health policymaking improving Indigenous eye health, and an increasing focus on prevention and development – with instability, with three reviews in nearly as many years. The Commonwealth transferred nutrition, literacy and nancial management programs in Jawoyn communities near Katherine in the responsibility for Indigenous health between the CDH and CDAA at this time which contributed to NT (Barunga, Manyallaluk and Wugularr) (Fyfe 2002; O’Loughlin 2002; Leggatt 2002). This approach was policymaking instability. The Commonwealth started to invest more seriously in improved somewhat controversial at the time, as Fyfe (2002, pp. 9-10) describes: environmental living conditions for Indigenous communities in 1981. Aboriginal blindness was Fred Hollows’s original cause célèbre – before Eritrea, Nepal and Vietnam – but NAIHO lost its Commonwealth funding in 1986, a temporary setbac k for the growing number of it is not the Foundation’s core work in its own back yard. Despite what the public and its supporters advocates for community control in Indigenous health. The World Health Organisation (WHO) might think, the Foundation has not run eye-speci c health programs in Indigenous Australia for progressed the diagnosis of trachoma worldwide through its ve key signs, and the CDAA funded the many years. At rst glance this seems cruel indierence: especially when you consider that 25 years after Trachoma and Eye Health Committees in QLD, SA, and NT. Fred rst raised hell about trachoma – an eye disease of the third world – it still exists at hyper-endemic levels in some Aboriginal communities. Australia, as leading ophthalmologist and Foundation director Professor Hugh Taylor often points out, is the only rst world nation harbouring trachoma – the scarring of The AIH, later renamed the Australian Institute of Health and Welfare (AIHW), was established in 1984 as the cornea as the eyelashes turn in – and its levels are worse here than in the ‘worst parts of Africa’. the second Commonwealth agency responsible for data consolidation and analysis, but focused on Yes, it does seem odd, at rst glance. But the Foundation’s decision to move away from running eye health health data, including Indigenous health – critical for evidence-based policymaking. A dialogue continued programs is in line with what Fred realised before he died. Gone were the days of rushing out to the bush, during this period about whether Commonwealth Indigenous health programs should be consolidated white coats apping, to ‘save the blacks’ and x their eyes. Aboriginal people themselves had to take within the CDAA or the CDH. control and governments had to take responsibility for providing adequate services, he believed. And this is also the Foundation’s opinion. A Commonwealth funded working party developed the rst NAHS in 1989, and, although biomedical in nature, the NAHS was later a guide for a number of signi cant whole-of-government comprehensive primary health care policymaking advances, including the National Strategic Framework for Aboriginal and Torres Strait Islander Health. The RCIADIC formed in 1988, and its 45 The Commonwealth reviewed funding in the 1995-96 Budget and determined that the administration of Indigenous health and subsequent ndings had an important impact on later policymaking initiatives in Indigenous health and substance abuse programs should be transferred from ATSIC to the CDHSH from 1 July 1995. A memorandum of understanding more broadly in Indigenous aairs. was developed between ATSIC and CDHSH that clari ed the ongoing roles and responsibilities of the two agencies (ATSIC 1995, p. 115). 6.1.4 The period 1990-1999 46 The total funding allocated for these committees was $710,000 for 1991-92 ($310,000 for Qld, $150,000 for SA, and $250,000 for NT) (ATSIC 1992, p. 56) and $753,000 for 1992-93 ($330,000 for Qld, $158,000 for SA and $265,000 for NT) (ATSIC 1993b, p. 93). The amoun ts were not recorded in the ATSIC annual reports for the other years, although Taylor (1997, pp. 28, 31, 32) records $968,471 6.1.4.1 Indigenous eye health for 1995/96 ($447,835 for Qld, $205,365 for SA, and $315,271 for NT) and $980,391 for 1996/97 ($471,844 for Qld, $204,765 for SA, and $303,783 for NT). ATSIC provided $1m to Aboriginal and Torres Strait Islander communities for the provision of eye care in The Aboriginal and Torres Strait Islande r Commission Act was proclaimed on 7th February 1990, and 1993-94. 16 organisations were funded to operate projects relating to trachom a and diabetic retinopathy and to support training ATSIC commenced on the 5th March 1990, replacing the CDAA and the ADC (ATSIC 1991, p. xiii). ATSIC in eye care for Indigenous Health Workers (ATSIC 1994, p. 100). During 1989-90, $18,000 was provide to continue a study of diabetic retinopathy (ATSIC 1991, p. 41), but this project was not referred to again in all subsequent ATSIC annual reports nor inherited the former CDAA role of funding and administration of all Commonwealth programs relating Commonwealth Department of Health and Family Services/Commonwealth Department of Health and Aged Care Annual Reports to Indigenous health, including eye health. ATSIC responsibility for Indigenous health continued until the up to 1999-2000. A number of scienti c papers were later published on the prevalence of diabetic retinopathy in Indigenous Commonwealth Department of Health and Family Services (CDHFS) assumsed re ponsibility from the 1st populations in NT and SA where support was acknowledged from, among other organisations, the Commonwealth Department of Health and the NT Aboriginal Eye Health Committee (Jaross, Ryan & Newland 2003,2005), and the SA Eye Health Program (Durkin, Casson & Newland 2006). 47 Professor Fred Hollows died on 10 February 1993. 48 A full copy of this paper is shown in Appendix G. 27 The FHF started working in far north Queensland, Cape York and the Torres Strait in 1994, and in 1995-1997, worked with the ophthalmologist Dr Garry Brian49 to develop and conduct a demonstration model for specialist eye service delivery to rural and remote communities in far north Queensland (Brian 1997; FHF 1995, p. 10; FHF 1996, p. 13; FHF 1997, pp. 14-15; FHF 1998, p. 12; Fyfe 2002, p. 17)50. The context, history, and details (e.g. implementation, service provision, challenges, impediments) of the model are shown in Appendix F, and a summary in Taylor (1997, pp. 37-41). The demonstration model included people living in the Torres Strait, Cape York, and Indigenous communities served by Wuchopperen Health Service (http://www.wuchopperen.com/) in Cairns, and was in line with FHF policy of not providing long-term health services that are clearly the responsibility of government. The innovative approach of the FHF model was not in the medical treatments or their application, but in the organisation and nancing of the service, with potential for widespread application around Australia (Brian 1997, pp. 14-21). The FHF hands-on involvement in the service ceased in January 1997, but the hope was that the eye health service would continue with its unique mix of public and private partnerships, and that a national review into Indigenous eye health at that time would build upon the lessons learned in this demonstration project (Brian 1997, p. 22)51.

The FHF and Dr Brian recorded a number of critical observations about the Queensland Trachoma and Eye Health Program (QTEHP) at the time (Brian 1977, pp. 16-21)52 that inuenced Recommendation 3 of the national review (Taylor 1997, p. 3) and the subsequent Commonwealth Government decision to cease funding of the State and NT based eye health services (CDHFS 1998, p. 118).

When the CDHFS assumed responsibility for Aboriginal and Torres Strait Islander speci c health and substance abuse programs on 1st July 1995, it set up an Oce for Aboriginal and Torres Strait Islander Health Services (OATSIHS) to manage these programs (CDHFS 1996, p. 5). This administrative shift was aimed at developi ng a greater focus on Aboriginal and Torres Strait Islander needs in mainstream programs.

The OATSIHS works (CDHFS 1998, p. 117):

across all areas of the Department to ensure a coordinated approach to the development of policies and programs. This is essential because the Oce cannot be responsible for all Aboriginal health matters. Mainstream programs in the Department also have a responsibility to ensure that they meet the needs of Aboriginal and Torres Strait Islander peoples.

49 Dr Brian had been providing an ophthalmic service in the Torres Strait since 1986 (Brian 1997, p. 8). 50 The original FHF project with Apunipima Health Council changed considerably from a broader lifestyle diseases approach to a narrower project of specialist eye service delivery to rural and remote commun ities (Brian 1997, p. 5). See Appendix G for more details. 51 The FHF and Dr Brian were central to the then Commonwealth Minister for Health and Family Services, Dr Michael Wooldridge, commissioning the national review by Professor Hugh Taylor (Fyfe 2002, p. 17). 52 These included: ‘QTEHP, despite years of community visits, with sucient funding and manpower, was unable to admit to The Foundation that any meaningful information concerning ocular morbidity had been collected.’ (Brian 1997, p. 19); ‘QTEHP produces and retains its own notes. Sometimes a copy nds its way into a patient’s community clinical le. This makes integration of the eye service with existing primary and local medical ocer care dicult.’ (Brian 1997, p. 20); QTEHP has diculty securing services for its patients.’ (Brian 1997, p. 20); ‘QTEHP oers free spectacles. Indeed, the distribution of these seems to be the program’s raison dietre’ (Brian 1997, p. 20); ‘In order to satisfy the need to generate suitable attendance statistics, it is not unknown, when adult attendance is down, for QTEHP to visit a community school and ip eye lids as a screen for trachoma. This practice is at odds with a commitment to good quality comprehensive service.’ (Brian 1997, p. 21).

28 The FHF started working in far north Queensland, Cape York and the Torres Strait in 1994, and in OATSIHS primarily concentrated on direct funding support to ACCHSs (CDHFS 1996, p. 78). Over the ve 1995-1997, worked with the ophthalmologist Dr Garry Brian49 to develop and conduct a year period 1995/96 to 1999/2000, a median of 75.6% of total OATSIHS outlays were for ACCHSs53. The demonstration model for specialist eye service delivery to rural and remote communities in far north Trachoma and Eye Health Committees in QLD, SA and NT were funded by CDHFS in 1995/96 and 1996/97, Queensland (Brian 1997; FHF 1995, p. 10; FHF 1996, p. 13; FHF 1997, pp. 14-15; FHF 1998, p. 12; Fyfe 2002, p. but funding ceased in 1997/98 (Taylor 1997, pp. 28, 31, 32; CDHFS 1998, p. 118). 17)50. The context, history, and details (e.g. implementation, service provision, challenges, impediments) of the model are shown in Appendix F, and a summary in Taylor (1997, pp. 37-41). The demonstration The Commonwealth Minister for Health and Family Services commissioned a major review of eye health model included people living in the Torres Strait, Cape York, and Indigenous communities served by in Indigenous communities in 1996 (CDHFS 1997, p. 121). The review was undertaken by Professor Hugh Wuchopperen Health Service (http://www.wuchopperen.com/) in Cairns, and was in line with FHF policy of Taylor, and his report was presented to the Minister on 13 June 1997 (Taylor 1997; CDHFS 1997, p. 121). not providing long-term health services that are clearly the responsibility of government. The innovative OATSIHS commissioned 5 separate consultancies for this review at a total cost of $132,120 (CDHFS 1997, p. approach of the FHF model was not in the medical treatments or their application, but in the 291). The reviewer was instructed to report on (Taylor 1997, p. 1): organisation and nancing of the service, with potential for widespread application around Australia (Brian 1997, pp. 14-21). The FHF hands-on involvement in the service ceased in January 1997, but the - the status of eye health amongst Aboriginal and Torres Strait Islander peoples; hope was that the eye health service would continue with its unique mix of public and private partnerships, and that a national review into Indigenous eye health at that time would build upon the - the eectiveness of eye health programs and their capacity to meet eye health needs; and lessons learned in this demonstration project (Brian 1997, p. 22)51. - how quality eye health services could be delivered in the future. The FHF and Dr Brian recorded a number of critical observations about the Queensland Trachoma and Eye Health Program (QTEHP) at the time (Brian 1977, pp. 16-21)52 that inuenced Recommendation The process of this review was criticised as echoing past colonial practices, and being top-down in nature 3 of the national review (Taylor 1997, p. 3) and the subsequent Commonwealth Governme nt decision to (Kaplan-Myrth 2004, pp. 8-11). The review was completed quickly, within 6 months, and had no formal ethics cease funding of the State and NT based eye health services (CDHFS 1998, p. 118). review; however, the criticism is somewhat harsh for a number of reasons. Firstly, the review had a 7 member steering committee, including a representative from NACCHO and another from the Indigenous When the CDHFS assumed responsibility for Aboriginal and Torres Strait Islander speci c health and controlled commonwealth-funded Trachoma and Eye Health Committees (Taylor 1997, p. 139). substance abuse programs on 1st July 1995, it set up an Oce for Aboriginal and Torres Strait Islander Kaplan-Myrth (2004, p. 9) considered these organisations were at the bottom of the hierarchy of people Health Services (OATSIHS) to manage these programs (CDHFS 1996, p. 5). This administrative shift responsible for eye health policy in the review, but that was not the case ; moreover, the steering committee was aimed at developing a greater focus on Aboriginal and Torres Strait Islander needs in mainstream was missing from the diagram showing the policy hierarchy (Kaplan-Myrth 2004, p. 10). Secondly, the programs. criticism does not adequately take account of the origin of the review; this went back to 1994 and the formation of Apunipima Cape York Health Council and the work of the FHF and Dr Garry Brian responding The OATSIHS works (CDHFS 1998, p. 117): to their request for help to set up a credible eye health service program in far north Queensland. As described earlier, this work lead to the meeting in Canberra with the Minister of Health and Family Services (FHF 1996, p.13). Thirdly, the review consulted widely in various ways (Taylor 1997, pp. 121-141): there were 51 written submissions; the following organisations were contacted - 149 Aboriginal and Torres Strait Islander Community-Controlled Health Services, health authorities of the 8 State/Territory jurisdictions, 40 ophthalmologists and researchers from around Australia, and 6 regional organisations with an interest in public health and eye health; meetings were held in 70 dierent locations around Australia; and 3 stakeholder workshops jointly chaired by Mr Sol Bellear who had direct experience in Aboriginal and Torres Strait Islander eye health following the NTEHP (Bellear 1985), and was an inaugural ATSIC Commissioner in 1990 and 1991 (ATSI C 1991, 1992).

49 Dr Brian had been providing an ophthalmic service in the Torres Strait since 1986 (Brian 1997, p. 8). 50 The original FHF project with Apunipima Health Council changed considerably from a broader lifestyle diseases approach to a narrower project of specialist eye service delivery to rural and remote communities (Brian 1997, p. 5). See Appendix G for more details. 51 The FHF and Dr Brian were central to the then Commonwealth Minister for Health and Family Services, Dr Michael Wooldridge, commissioning the national review by Professor Hugh Taylor (Fyfe 2002, p. 17). 52 These included: ‘QTEHP, despite years of community visits, with sucient funding and manpower, was unable to admit to The Foundation that any meaningful information concerning ocular morbidity had been collected.’ (Brian 1997, p. 19); ‘QTEHP produces and retains its own notes. Sometimes a copy nds its way into a patient’s community clinical le. This makes integration of the eye service with existing primary and local medical ocer care dicult.’ (Brian 1997, p. 20); QTEHP has diculty securing services for its 53 The total OATSIHS outlays were: $120,681 in 1995/96 (CDHFS 1996, p. 94); $121,802 in 1996/97 (CDHFS 1997, p. 126); $139,861 patients.’ (Brian 1997, p. 20); ‘QTEHP oers free spectacles. Indeed, the distribution of these seems to be the program’s raison dietre’ in 1997/98 (CDHFS 1998, pp. 128-129); $165,659 in 1998/99 (CDHAC 1999, p. 192-193); and $182,274 in 1999/2000 (CDHAC 2000, p. (Brian 1997, p. 20); ‘In order to satisfy the need to generate suitable attendance statistics, it is not unknown, when adult attendance 291). is down, for QTEHP to visit a community school and ip eye lids as a screen for trachoma. This practice is at odds with a commitment to good quality comprehensive service.’ (Brian 1997, p. 21).

29 The review produced 17 recommendations (Taylor 1997, pp. 1-9; Appendix H). These related to: Primary eye care services (1,2); Specialist eye services (3,4,5); Speci c eye conditions (refractive error [6,7,8], Cataract [9], Diabetic retinopathy [10,11,12], Trachoma [13,14]); The environment (15); and A National Information Network (16,17). OATSIHS responded positively to the report (OATSIHS 1997; CDHFS 1998, p. 118)54:

An implementation plan in response to the Taylor report on ‘Eye Health in Aboriginal and Torres Strait Islander Communities’ has been developed and approved by the Minister. Following recommendations in the report, funding for State based eye health services has ceased and major advances have been made in developing regional implementation plans in several states. The one treatment drug for trachoma, Azithromycin, has been added to the Pharmaceutical Bene ts Scheme (PBS) and is being trialed as a free drug for remote area Aboriginal Health Services.

OATSIHS commissioned a consultancy of $34,814 to advise on the implementation of regional eye health services for Indigenous communities (CDHAC 1999, p. 333). Consultations for the consultancy took place between March 1998 and April 1999, and 6 documents were produced with recommendations for implementation of the service delivery aspects of the Taylor Report (Taylor 1997) for SA, NT, QLD, NSW, VIC, and TAS (Brian 1998a,b,c,d,e; Brian 1999). WA did not pa rticipate in the consultations (Brian, G. 2010, pers. comm., 8 April). Appendix I shows a ‘Regional Model of Public-Private Eye Service’ Delivery (Brian 1998c, pp. 7-12).

The Indigenous Framework Agreements between the Commonwealth, State and Territory Governments, ATSIC, and the community controlled health sector were signed by all participants by 1998/99, and these agreements committed the signatories to increased resources, joint planning, access to mainstream and Indigenous – speci c services, and improved data collection and evaluation (CDHAC 1999, p. 174; Anderson 2004a, pp. 254-72). The Framework Agreements were necessary for implementation of the recommendations of the Taylor Report (Taylor 1997).

We could not nd a policy document called the ‘National Aboriginal and Torres Strait Islander Eye Health Program’ (NATSIEHP)55, although the Program is referred to widely (e.g. CDHA 2004a; Taylor et al 2004; CDHA 2005a; Murray et al 2005, pp. 521, 52356), and is briey described in various documents (e.g. CDHA 2004a, pp. 1-2; Taylor et al 2004, pp. xiii, xv). Taylor et al (2004, p. xv) write that:

The NATSIEHP arose from recommendations Professor Taylor made in his review of eye health in Aboriginal and Torres Strait Islander communities. His report recommended, among other things, a model of service delivery that is based on a region al co-ordination of services using a mixture of public and private sector funding and resources. This was to replace the remaining elements of the National Trachoma and Eye Health Program (NTEHP). In response, the Commonwealth implemented a NATSIEHP with three strands: regional eye health services coordination; access to specialised equipment; and training assistance.

54 The CDHFS implemented a National Aboriginal and Torres Strait Islander Eye Health Program (NATSIEHP) with three strands: regional eye health services coordination; access to specialised equipment; and training assistance (Taylor et al 2004, p. xv). 55 The Eye and Ear Health Section of the Oce for Aboriginal and Torres Strait Islander Health (OATSIH) was unable to nd a policy document entitled the ‘National Aboriginal and Torres Strait Islander Eye Health Program’ when we requested this (De Ruyter, G. Assistant Director, 2010, pers. comm., 15 July). We also could not nd such a policy document using the CDHA ‘Wayback Machine’ internet archive, viewed 14 July 2010,

30 According to the CDHA (2004, p. 1), the aim of the Program was to improve the eye health of the Indigenous population, mainly through ‘the provision of a skilled workforce and appropriate infrastructure, thereby increasing the regional access of Aboriginal and Torres Strait Islander peoples to quality eye health services’, particularly in rural and remote areas.

Implementation of the NATSIEHP commenced in 1998, and was administered by OATSIHS (CDHA 2004a, p. 1)57. The major components of the Program emphasised improving primary eye health care through a regional model, including the following (CDHA 2004a, p. 1-2)58:

• the establishment of 29 eye health co-ordinator regions with 34 positions nationally to facilitate access to optometry and ophthalmology services in the Aboriginal and Torres Strait Islander primary health care setting59;

• the provision of ophthalmic and optometric equipment in identi ed ACCHSs across the country, to reduce barriers in service delivery for specialists visiting regional areas;

• the provision of eye health training for regional eye health co-ordinators and Aboriginal Health Workers;

In 1998/99, OATSIHS reported a number of advances in national eye health programs. These were: Development of infrastructure for the regional implementation of eye health services, including access to equipment and coordination of specialist eye services; the completion of regional eye health plans in most States and Territories, and associated funds provided to emplo y regional co-ordinators, provide equipment, and improve access to specialist services at the regional level (CDHAC 1999, p. 174, 178).

However, OATSIHS noted that implementation of new payment arrangements for ophthalmologists in rural and remote areas under the Eye Health Program were slower than expected due to the complexity of existing arrangements and variations in the arrangements within and between the States and Territories (CDHAC 1999, p. 179).

OATSIHS established a National Aboriginal and Torres Strait Islander Eye Health Advisory Group which met for the rst time in March 2000, providing OATSIH with strategic advice on how to progress key eye-health initiatives60. This group was made up of key stakeholders including NACCHO, specialists (RACO and Optometrists Association of Australia [OAA]) and Heads of Aboriginal and Torres Strait Islander Health Units (HAHU) (CDHAC 2000, p. 275). OATSIH also worked with the OAA to encourage more practitioners to visit rural and remote communities (OAA 2000a,b,c), and funded the development and publication of Specialist Eye Health Guidelines for use in Aboriginal and Torres Strait Islander Populations (OATSIH 2001).

57 Taylor et al (2004, p. 45) wrote that ‘OATSIH developed a generic national plan for the rollout of the NATSIEHP which was then directed to their state oces for modi cations based on the state oce’s priorities and other state dierences.’ 58 Other actions under the umbrella of the NATSIEHP included the development of Specialist Eye Health Guidelines (OATSIH 2001) and the listing of azithromycin (a semi-synthetic macrolide antibiotic) on the PBS for treatment of trachoma (CDHA 2004a, p. 2). 59 Taylor et al (2004, pp. 153-154) list 34 eye health regions and co-ordinators: 7 in NSW; 8 in SA; 7 in QLD; 2 in VIC; 5 in the NT; and 5 in WA. 60 This Group was not referred to again in subsequent documents we examined in this research.

31 The WHO endorsed the SAFE strategy for trachoma control in 1997 (WHO 1997, p. 18)61:

A manual (“green”) has been developed by WHO and The Edna McConnell Clark Foundation for district and community workers to explain how to work with communities and achieve community support for trachoma control.

The manual promotes the SAFE strategy:

S – surgery for trichiasis, TT (in the commun ity) A – antibiotics to treat inammatory disease, TF and TI F – face washing, to encourage clean faces in children E – environmental activities, to improve water supply and household sanitation

It was emphasised that the SAFE strategy requires an ongoing dialogue, partnership and full partici- pation of the communities with the eye care workers.

The SAFE strategy has been favourably reviewed internationally (e.g. Bailey & Lietman 2001; Kuper et al 2003; West 2003; Emerson et al 2006), and whilst there are many questions without answers (Emerson et al 2006, p. 613), West (2003 p. 18) concluded that the ‘SAFE strategy is a safe bet to accomplish the elimination of blinding trachoma’. The WHO remains supportive of the SAFE strategy (WHO 2010a), and there is a large international literature on trachoma and SAFE (ICEH 2010)62.

Taylor (1997, pp. 89-90) recommended that the SAFE strategy should be implemented in Australia63. The NT Gove rnment prepared guidelines for the management of trachoma incorporating the SAFE strategy in 1998, and these were updated by a second edition in 2008 (Coey 2008; NTDHF 2008)64.

Ewald and colleagues (Ewald et al 1999; Ewald & Hall 2001; Ewald et al 2003) undertook a two and a half year evaluation of health outcomes in Yuendumu in Central Australia, beginning eld work in June 1998, and nishing in late 2000, twelve months after the completion of National Aboriginal Health Strategy – Environmental Health Program (NAHS-EHP)65 interventions.

61 One of us, H.R. Taylor, participated in the WHO meeting in Geneva on 17-20 June 1996 when the SAFE strategy was discussed. The abbreviations used in the 1997 WHO quotation for key signs of trachoma are: TT – Trachomatous Trichiasis; TF – Trachomatous inammation, Follicular; and TI – Trachomatous inammation, Intense. Others not referred to in the quotation are: CO – Corn eal Opacity; and TS – Trachomatous Scarring (Taylor 1997, p. 89). 62 There were four Cochrane Reviews (at the time of writing this report) of randomised or quasi-randomised controlled trials of interventions in individual arms of the SAFE strategy for trachoma control. The reviews investigated were surgery for trichiasis (S) (Yorston et al 2006), antibiotics (A) (Mabey et al 2005), face washing (F) (Ejere et al 2004), and environmental sanitary interventions (E) (Rabiu et al 2007). There were no reviews of combined arms of the SAFE strategy. The conclusions of the four reviews showed there was some or little evidence each intervention alone reduced or controlled trachoma. The Cochrane Review by Ejere et al (2004) included a randomised controlled trial of the eects of eye drops and eye washing on follicular trachoma among Aboriginal children (Peach et al 1987). 63 We discuss later in our report the adoption nationally in 2006 of the Guidelines for the public health management of trachoma in Australia based on the WHO SAFE strategy (CDHA 2006). 64 The 1997 report of WHO ‘Future Approaches to Trachoma Control’ noted that ‘Further eld research is needed to identify optimal ways of achieving community support and sustainability for the various components of the SAFE strategy, including the important hygiene/behavioural aspects of trachoma prevention’ (WHO 1997, p. 19). Trachoma management in the NT is currently based on the WHO SAFE strategy (NTDHF 2008, p. 11). 65 The Community Housing Infrastructure Program (CHIP) of ATSIC focused on community infrastructure issues, and NAHS-EHP was initiated in 1990 to facilitate major infrastructure development beyond the scope of CHIP and thought to have a direct impact on health such as water supply, sewerage, housing, power supply, internal roads and dust control (ATSIC 1997).

32 The interventions in Yuendumu included 24 new or renovated houses, a reticulated sewerage system and upgraded treatment works, sealing some community roads, and landscaping the sports oval (Ewald & Hall 2001, p. 13). Ewald and colleagues incorporated disease control programs for trachoma and using a before-and-after cross-sectional design. The control program for trachoma was in three rounds each consisting of community census, screening of children < 13 years of age, health promotion activities, and antibiotic treatment with oral azithromycin (Ewald & Hall 2001; Ewald et al 2003). This was essentially a short-term evaluation of the ‘A’, ‘F’, and ‘E’ components of the SAFE strategy in Australia.

The prevalence of trachoma among Yuendumu children aged < 13 years was 40% (95% CI 32-46%) in November 1998 - before the trachoma control intervention started, 33% (96% CI 26-40%) in June 1999 seven months after the trachoma control intervention started, and 37% (95% CI 29-46%) in August 2000 twenty-one months after the trachoma control intervention started and twelve months after completion of the NAHS-EHP interventions. The dierences in prevalence of trachoma were not statistically signi cant (Ewald & Hall 2001, p. 123; Ewald et al 2003). However, Ewald and colleagues pointed out the change in age speci c prevalence between November 1998 and June 1999 among pre-school age children (45%-26%) and < two year olds (30%-4%) was of borderline statistical signi cance, and may have been of clinical signi cance (Ewald & Hall 2001, p. 123). This observation may reinforce the important message that ‘Trachoma is the disease of the crèche’ (Taylor 1997, p. 89).

Ewald and Hall (2001, p. 176) concluded from their study that the level of trachoma remained endemic66 one year after the NAHS-EHP capital works were completed, despite an intensive public health treatment and education program during this period, and the envisaged theoretical bene t of combined disease treatment and environmental interventions. The reasons oered for this lack of improvement in trachoma prevalence in children aged < 13 years were (Ewald & Hall 2001, p. 176):

• Inadequate level of environmental improvement;

• High level of mobility between and within communities;

• Insucient level of taking the azithromycin medication; and

• Inadequate face washing.

Wright (2007, p. 3) found that the A and F components of SAFE can be eective interventions for trachoma, but that there are barriers impeding its widespread implementation in the NT.

Vision 2020 Australia (V2020A)67, a peak body for the eye health and vision care sector in Australia, was fo rmed in September 1999, and launched in Sydney in October 2000 by the Director General of the WHO and the Commonwealth Minister for Health and Aged Care. The eye health needs of Indigenous people were a major area of concern at that time (Taylor 2002), and remain a concern today (V2020A 2010).

66 Endemic disease is: ‘The constant presence of a disease or infectious agent within a given geographic area or population group; may also refer to the usual prevalence of a given disease within such an area or group’ (Porta 2008, p. 78). 67 Vision 2020 Australia is part of Vision 2020, a global initiative for the elimination of avoidable blindness, a joint program of WHO and the International Agency for the Prevention of Blindness (IAPB) with an international membership of Non Government Organisations (NGOs), professional associations, eye care institutions and corporations (Vision 2020 2010).

33 During 1995 Laming et al (2000, pp. 163-166) evaluated the impact of single-dose azithromycin for trachoma in children of school age (14 years) and younger. The study found that single dose azithromycin did have advantages over prolonged courses of oral erythromycin or tetracycline drops. However it should only be considered one of four components of the SAFE Strategy. However, the Lansingh et al (2010) study of mobile communitie s in Central Australia found during 4 visits in 1999 and 2000, that the addition of extensive environmental improvements did not increase the impact of antibiotic treatment and the promotion of facial cleanliness needs to be adapted to the dynamics of the local setting.

6.1.4.2 Broader signi cant policy events

Commonwealth, State and Territory Ministers for Aboriginal Aairs and Health (called the Joint Ministerial Forum) met in Brisbane in June 1990 and agreed on processes to start implementing the recommendations of the AHDG they had tasked in March 1989 to assess how to implement the NAHS (ATSIC 1991, pp. 39-40)68. The Commonwealth Government Cabinet decided on 13 December 1990 to support the NAHS (ATSIC 1992, p. 34), and initially allocated $232 million over ve years for its implementation (ATSIC 1992, p. 93)69. An Oce of Aboriginal Health was established within ATSIC to: implement the NAHS; provide a secretariat for a Council for Aboriginal Health70; assess infrastructure and environmental conditions in Indigenous communities; and monitor Commonwealth sector activities in Indigenous health (ATSIC 1992, p. 38). The Commonwealth reviewed the progress of Commonwealth and State/Territory negotiations with respect to implementation of the NAHS in December 1991 and con rmed funding to 30 June 1995, with an evaluation to be conducted prior to the end of that period which would form the basis for directions over the subsequent ve year period (NAHSEC 1994, p. 9).

Interim Aboriginal and Torres Strait Islander Health Goals and Targets were developed in 1991 by consultants engaged by the CDHHCS in order to evaluate the eectiveness of the NAHS (Wronski & Smallwood 1991; ATSIC 1993b, p. 59). The report developed 46 goals grouped as: major causes of illness (20); risk factors for illness (5); housing, water, sanitation, environmental and personal safety (3); employment, education, and training (6); and resource allocation, access and appropriateness, intersectoral collaboration, decision making, health development support, and research (12). Goal 11 was ‘Reduce the occurrence, progression and disability from visual impairment (Wronski & Smallwood 1991, pp. 28-29)71.

68 Anderson (1997, p. 125) describes how the ACCHSs met in June 1989 and unanimously rejected the need for the AHDG, and upon their advice, the Commonwealth Minister for Aboriginal Aairs appointed a CAG to provide advice on the implementation of NAHS. Both the AHDG and the CAG produced reports that had notable strategic dierences (AHDG 1989; CAG 1990). The views of the CAG were not considered by the Joint Ministerial Forum, but the Forum endorsed all 21 recommendations of the AHDG (ATSIC 1991, pp. 39-40; Anderson 1997, p. 125). The Forum agreed to the establishment of a Council for Aboriginal Health and its terms of reference, and the establishment of Tri-Partite Forums in each State and Territory with representatives from Indigenous communities, Commonwealth, and State and Territory Governments (ATSIC 1992, p. 38). 69 The cabinet decision also directed the Commonwealth to secure broadly matching funds from States and Territories, and this resulted in long delays in the release of Commonwealth funds (Anderson 1997, pp. 125-126). 70 The Council for Aboriginal Health was a standing committee to the Australian Aboriginal Aairs Council (AAAC) and the Australian Health Ministers Conference (AHMC), to advise both bodies on Indigenous health. The membership of the Council comprised one Indigenous representative from each of the 17 ATSIC Zones, one representative from each State/Territory Government, an ATSIC Commissioner, and Senior Executive Service (SES) representatives from each of ATSIC, Commonwealth Department of Employment, Education and Training (CDEET) and CDHHLGCS (ATSIC 1993, p. 95). The Council for Aboriginal Health only met four times during the rst ve years of the NAHS, and its operation was reviewed after two meetings (Anderson 1997, p. 128). 71 More than 700 copies of the document were distributed for comment but only 27 responses were received, many of which did not support the document (NAHSEC 1994, p. 29). 34 During 1995 Laming et al (2000, pp. 163-166) evaluated the impact of single-dose azithromycin for NACCHO rejected the interim goals and targets, the Council for Aboriginal Health expressed concern at trachoma in children of school age (14 years) and younger. The study found that single dose the lack of consultation in their development72, and little progress was made towards agreement on azithromycin did have advantages over prolonged courses of oral erythromycin or tetracycline drops. Indigenous goals and targets at this time (NAHSEC 1994, p. 29). However it should only be considered one of four components of the SAFE Strategy. However, the Lansingh et al (2010) study of mobile communities in Central Australia found during 4 visits in 1999 and A national conference of ACCHSs was held in Melbourne on 12-15 March 1991 to discuss the 2000, that the addition of extensive environmental improvements did not increase the impact of establishment of: a National Aboriginal Community Controlled Health Organisation (NACCHO)73; a Council antibiotic treatment and the promotion of facial cleanliness needs to be adapted to the dynamics of the for Aboriginal Health; and to select Indigenous representatives on the Council for Aboriginal Health local setting. (ATSIC 1992, p. 38). Anderson (1997, p. 127) describes the importance of ACCHSs during this period as key sites for delivery of Indigenous primary health care, and providing key linkages with secondary and 6.1.4.2 Broader signi cant policy events mainst ream health systems. The de nition of Aboriginal community control in the NAHSWP report (NAHSWP 1989, p. xiv): Commonwealth, State and Territory Ministers for Aboriginal Aairs and Health (called the Joint Ministerial Forum) met in Brisbane in June 1990 and agreed on processes to start implementing the the means by which Aboriginal people have in countering the systems imposed on them by recommendations of the AHDG they had tasked in March 1989 to assess how to implement the NAHS non- Aboriginal people. Such imposed systems must be modi ed to accommodate Aboriginal aspirations if an appropriate and eective national health strategy for Aboriginal people is to be developed. (ATSIC 1991, pp. 39-40)68. The Commonwealth Government Cabinet decided on 13 December 1990 to support the NAHS (ATSIC 1992, p. 34), and initially allocated $232 million over ve years for its implementation (ATSIC 1992, p. 93)69. An Oce of Aboriginal Health was established within ATSIC is indicative of support by the NAHSWP for the role of ACCHSs in Indigenous health (Anderson 1997, p. 127). to: implement the NAHS; provide a secretariat for a Council for Aboriginal Health70; assess infrastructure The RCIADIC was supportive of ACCHSs (RCIADIC 1991a). and environmental conditions in Indigenous communities; and monitor Commonwealth sector activities in Indigenous health (ATSIC 1992, p. 38). The Commonwealth reviewed the progress of The nal report of the RCIADIC was released in 1991 (RCIADIC 1991b). This report had 339 Commonwealth and State/Territory negotiations with respect to implementation of the NAHS in recommendations grouped under 28 themes, many of which were health-related. For example, the themes December 1991 and con rmed funding to 30 June 1995, with an evaluation to be conducted prior to the of: Harmful use of alcohol and other drugs (63-71); Housing and infrastructure (73-76); Custodial health end of that period which would form the basis for directions over the subsequent ve year period (NAHSEC and safety (122-167); Towards better health (246-271); Coping with alcohol and other drugs (272-288); and 1994, p. 9). Improving the living environment: housing and infrastructure (321-327). Recommendation 271 was explicitly about the NAHS (RCIADIC 1991c): Interim Aboriginal and Torres Strait Islander Health Goals and Targets were developed in 1991 by consultants engaged by the CDHHCS in order to evaluate the eectiveness of the NAHS (Wronski & Smallwood 1991; ATSIC 1993b, p. 59). The report developed 46 goals grouped as: major causes of illness That the implementation of the National Aboriginal Health Strategy, as endorsed by the Joint Ministerial (20); risk factors for illness (5); housing, water, sanitation, environmental and personal safety (3); Forum, be regarded as a crucial element in addressing the underlying issues the Commission was employment, education, and training (6); and resource allocation, access and appropriateness, directed to take into account, and that funds be urgently made available to allow the Strategy to be intersectoral collaboration, decision making, health development support, and research (12). Goal 11 was implemented. ‘Reduce the occurrence, progression and disability from visual impairment (Wronski & Smallwood 1991, pp. 28-29)71. Recommendation 246 was (RCIADIC 1991d):

That the State, Territory and Common wealth governments act to put an end to the situation where insucient accurate and comprehensive information on inputs to and activities of Aboriginal health 68 Anderson (1997, p. 125) describes how the ACCHSs met in June 1989 and unanimously rejected the need for the AHDG, and upon their advice, the Commonwealth Minister for Aboriginal Aairs appointed a CAG to provide advice on the implementation programs is available. Such information is needed if Aboriginal organisations, governments and the of NAHS. Both the AHDG and the CAG produced reports that had notable strategic dierences (AHDG 1989; CAG 1990). The views community are to be in a position to understand and monitor what is taking place in this area, to of the CAG were not considered by the Joint Ministerial Forum, but the Forum endorsed all 21 recommendations of the AHDG estimate the bene ts derived there from and to develop appropriate policies and programs to (ATSIC 1991, pp. 39-40; Anderson 1997, p. 125). The Forum agreed to the establishment of a Council for Aboriginal Health and its address existing and newly emerging needs. terms of reference, and the establishment of Tri-Partite Forums in each State and Territory with representatives from Indigenous communities, Commonwealth, and State and Territory Governments (ATSIC 1992, p. 38). 69 The cabinet decision also directed the Commonwealth to secure broadly matching funds from States and Territories, and this resulted in long delays in the release of Commonwealth funds (Anderson 1997, pp. 125-126). 70 The Council for Aboriginal Health was a standing committee to the Australian Aboriginal Aairs Council (AAAC) and the Australian Health Ministers Conference (AHMC), to advise both bodies on Indigenous health. The membership of the Council comprised one Indigenous representative from each of the 17 ATSIC Zones, one representative from each State/Territory 72 The document recorded no consultations, and the only acknowledgement was for the helpful comments of 12 individuals most Government, an ATSIC Commissioner, and Senior Executive Service (SES) representatives from each of ATSIC, Commonwealth of whom were non-Indigenous (Wronski & Smallwood 1991, p. 74). Oversight of the project was provided by a committee made Department of Employment, Education and Training (CDEET) and CDHHLGCS (ATSIC 1993, p. 95). The Council for Aboriginal up of ocers of the CDHHCS, ATSIC, CDEET, and Mr Sol Bellear representing the ATSIC Commissioners (Wronski & Smallwood 1991, Health only met four times during the rst ve years of the NAHS, and its operation was reviewed after two meetings (Anderson p. 2). 1997, p. 128). 73 NAIHO changed its name to NACCHO in 1992 (NACCHO 2008b). 71 More than 700 copies of the document were distributed for comment but only 27 responses were received, many of which did not support the document (NAHSEC 1994, p. 29). 35 The recommendation 246 was based on a number of observations of the Royal Commission, including about eye health (RCIADIC 1991d):

Over the years, the Commonwealth Government has allocated additional funds for a number of special purposes. For example, in response to extremely high levels of trachoma and other avoidable disorders of the eyes among Aboriginal people, the then Commonwealth Department of Health funded a special National Trachoma and Eye Health Program, which undertook during the period 1976-79 an Australia-wide screening and treatment program for eye disease, and reviewed a number of other diseases. It also undertook a detailed evaluation of the physical environmental factors that contribute to disease. After a brief interruption in 1980-81, the Program was re-established. State and Territory-based Trachoma Committees, on which Aboriginal people occupied a majority of the positions, were established. These Committees attempt to link their speci cally targeted eye health work with other services, both Aboriginal community-controlled and State-run. Separate gures for 1989-90 are not available, but in 1988-89 the Department of Aboriginal Aairs allocated $0.52m to enable the Committees to undertake their work.

Recommendation 247 of the Royal Commission focused on more and/or better quality training in a range of areas for all health professionals working with Indigenous Australians (RCIADIC 1991b), and this was based on a number of observations including (RCIADIC 1991e):

A number of conditions and diseases, such as leprosy and trachoma, although not directly implicated in any of the deaths examined by the Commission, are very uncommon among non-Aboriginal Australians. Their prevalence is far greater, however, among Aboriginal people. One result of their uncommon status in the places where medical and other health professionals are trained is that health professionals are poorly trained in their diagnosis and management.

A Torres Strait Health Strategy was developed in 1993 following a Torres Strait Health Workshop entitled ‘Our Health, Our Future, Our Decision’ held on Thursday Island (Waiben) from 27-29 April 1993 in response to speci c health concerns in the Torres Strait (NAHSWP 1989, pp. 15-127; P&TSRHA 1993). The strategy had 35 overall recommendations about programs (10), policy issues (3), funding issues (5), development (12), and lobbying (5) (P&TSRHA 1993, pp. 34-35), and built upon the Torres Strait Islander focus in the NAHS Report (NAHSWP 1989, pp. 115-127). There were no attendees at the 1993 workshop with a speci c interest in eye health, and this may have contributed towards a lack of any discussion about eye health services in the Torres Strait at the workshop (P&TSRHA 1993, p. 38-41)74. An implementation plan for the Torres Strait Health Strategy (TSHS) was prepared by a consultant in May 1996 for the Torres Strait Islander & Northern Peninsula Area Health Council (TSI&NPAHC) (TSI&NPAHC 1996).

74 Dr Peter Holt, Medical Superintendent of Thursday Island Hospital for many years, gave a presentation at the workshop entitled ‘A local perspective’, but did not speak about his support for the NTEHP in the Torres Strait (RACO 1980, p. 12), and his invitation in 1986 to Fred Hollows to visit again, which lead to Garry Brian (who was working with Fred Hollows in Sydney at the time) developing an ophthalmic examination and treatment program in the Torres Strait from 1987 (Brian 1997, pp. 3).

36 An Evaluation Report of the rst 5 years of implementation of the NAHS was published in December 1994 following a 6 month timeline for completion (NAHSEC 1994). The evaluation was overseen by an Evaluation Committee of thirteen members chaired by an ATSIC Commissioner75. The evaluation included consultations over the period 15th August1994 to 23rd September 1994 (i.e. 40 days) with 73 Indigenous and non-Indigenous organisations from all State and NT jurisdictions (including the SA Trachoma Program on 5 September 1994), and 23 written submissions were received from various Indigenous and non-Indigenous organisations and individuals (NAHSEC 1994, pp. C-1 to C-11). There were 5 major recommendations and 14 major ndings (NAHSEC 1994, pp. 2-4). Some of the major ndings were:

• The National Aboriginal Health Strategy (NAHS) was never eectively implemented.

• All governments have grossly underfunded NAHS initiatives in remote and rural areas if the objective of environmental equity by the year 2001 is to be attained.

• ATSIC has been a convenient scapegoat for inaction and the failure of governments to deliver.

• The National Council of Aboriginal Health which was established to oversee implementation of NAHS lacked political support from Commonwealth and State/Territory Ministers and ATSIC.

• Local community involvement and participation as espoused in NAHS is critical not only to improving quality of life but also to the attainment of an experience of health and length of life to be expected in a technologically advanced nation.

• Public health providers need to create meaningful coalitions with Aboriginal and Torres Strait Islanders so that communities and individuals can make informed choices regarding health.

• The Commonwealth objective of ‘gaining equity in access for Aboriginal and Torres Strait Islander peoples to health services and facilities by the year 2001’ – if taken to include “environmental health facilities” (for example, housing and essential services) – is unattainable at both current and projected levels of funding.

The NAHS Evaluation Report noted that a major resolution at the fourth and last meeting of the Council of Aboriginal Health in October 1993 was to recommend to the Ministers for Health and Aboriginal Aairs that NAHS funding be transferred to the Commonwe alth Health portfolio for ve years, to be reviewed after that time (NAHSEC 1994, p. 31). The transfer of administrative responsibility for Indigenous health programs from the Commonwealth Aboriginal Aairs portfolio to the Commonwealth Health portfolio nally took place on July 1st 1995 after considerable argument and lobbying by concerned organisations and individuals over many years (e.g. Gray 1976; PER 1980; Thomson 1985; Anderson 1994; Bartlett & Legge 1994; Gardiner-Garden 1994; NAHSEC 1994; Bartlett & Boa 2005; Anderson 1997)76.

75 The Evaluation Committee comprised 2 ATSIC Commissioners (the Committee Chairperson and one for the Torres Strait), 2 NACCHO representatives, 2 ATSIC Regional Council Chairpersons, the President of the Public Health Association of Australia (PHAA), 1 senior bureaucrat from each of OATSIHS, NT Department of Health and Community Services, Commonwealth Department of Finance, and the Commonwealth Department of Housing and Regional Development, and 2 senior bureaucrats from ATSIC (NAHSEC 1994, p. 8). 76 ATSIC was allocated $232 million over the rst 5 years for implementation of the NAHS primary health and environmental health programs, and $171 million of this (73.7%) was directed to housing and infrastructure services (NAHSEC 1994, p. 51). During this period, the resources available for ACCHSs was only marginally increased (Anderson 1997, p.129-130).

37 The following brie y summarises a number of other noteworthy events that occurred during the ten-year period 1990-1999 that had an impact on Indigenous health policy-making more generally: • The Hawke Labor Government was re-elected in March 1990, the Keating Labor Government was elected in March 1993, and the Liberal/National Party Coalition won oce in March 1996 and governed under Prime Minister John Howard until December 2007 77 ;

• The 111th Session of the National Health and Medical Research Council (NHMRC) held in Brisbane in June 1991 endorsed the ‘Guidelines on ethical matters in Aboriginal and Torres Strait Islander healt h research’ (NACCHO 2008d)78.

• The Australian Bureau of Statistics (ABS) published the detailed ndings of the National Health Survey: Aboriginal and Torres Strait Islander Results 1995 (ABS 1999). This had a short section on health (pages 10-24), and referred very brie y to eye health problems (page 17). Subsequent health surveys and reports were more useful (ABS 2006)79.

• From July 1 1996, the CDHAC approved: all existing ACCHSs to bulk-bill Medicare – new ACCHSs were required to submit applications for approval; and some State health department services to bulk-bill for salaried medical ocers and to return the additional funds to t he community for expanded services (ANAO 1998, p. 107).

• The CDHAC approved in April 1997 an implementation plan to fund PBS medicines to remote ACCHSs under Section 100 of the National Health Act, and for an ophthalmologist to operate from public hospitals in the Torres Strait and to bulk-bill (ANAO 1998, p. 107).

• In August 1997 Australian Health Ministers Council (AHMC) endorsed a set of National Performance Indicators (NPIs) and targets that governments should report against to monitor improvements in Indigenous health, subject to further renement. AHMAC agreed to rened set of NPIs in March 1998 (ANAO 1998, pp. 45-46; CDHFS 1998, p. 124).

• Framework Agreements between all State/Territory governments, State aliates of NACCHO, ATSIC, and the Commonwealth Minister of Health and Family Services were concluded in 1998 (CDHFS 1998, p. 117). These agreements were for improved access to health services, full Indigenous participation in decision making and priority determination, and for the collection of better data (ANAO 1998, pp. 94-99).

• OATSIHS was renamed the Oce for Aboriginal and Torres Strait Islander Health (OATSIH) in 1999, and remained within the CDHAC.

• A National Aboriginal and Torres Strait Islander Health Council was established in May 1996 (CDHFS 1996, p. 79), was restructured by the Commonwealth Minister for Health and Aged Care in 1999, and commenced a review of the NAHS to take Indigenous health into the twenty-rst century (CDHAC 2000, pp. 264, 269).

77 John Howard’s Government was re-elected in 1998, 2001, and 2004. 78 The NHMRC later published two other Indigenous research ethics guidelines (NHMRC 2003; 2005) that are supposed to supersede the 1991 document, however, NACCHO did not endorse either of these more recent guidelines, and as of 2008, considered the NHMRC 2001 guidelines as still valid (NACCHO 2008d). Taylor and colleagues recently described the diculties associated with ethics approval and community consultation processes in their multi-site studies for the National Indigenous Eye Health Survey (Taylor & Fox 2008; Studdert et al 2010). 79 The National Aboriginal and Torres Strait Islander Health Survey 2004-05 Austra lia (ABS 2006) compared health conditions between 1995, 2001, and 2004-05, and showed that eye/sight problems were consistently the most reported long term health conditions during this period (28%, 29% and 30% respectively) (ABS 2006, pp. 17). More detailed comparisons between 2001 and 2004-05 disaggregated the data by: remoteness; State/Territory; Torres Strait Islander in Queensland; labour force status; Indigenous/non-Indigenous (a ge standardised); age; sex; and more specic condition - cataract, short sighted/myopia, long sighted/hyperopia, blindness (complete/partial), other diseases of eye and adnexa (ABS 2002, pp. 3,12-15,18; ABS 2006, pp. 24,26,28,34,36). The primary data for 1995 is shown in ABS (1999, pp. 6,18-19,21-23). 38 6.1.4.3 Summary

This period was characterised by major changes at the Commonwealth level in the administration of Indigenous aairs, including Indigenous health. CDAA and ADC were abolished and replaced by ATSIC in 1990. The CDHFS took over responsibility for Indigenous health from ATSIC in 1995, eleven years after the Commonwealth health portfolio lost responsibility for Indigenous health to CDAA in 1984. The delivery of eye healt h services to much of rural and remote Australia was limited and ad hoc during this period. The FHF developed a demonstration model for specialist eye service delivery to rural and remote communities in far North QLD. The Trachoma and Eye Health Committees of QLD, SA, and NT were funded by the Commonwealth until the ndings of the 1997 national review of Indigenous eye health recommended replacing them with regional eye health services. Implementation of the comprehensive recommendations of the 1997 review of Indigenous eye health became known as the National Aboriginal and Torres Strait Islander Eye Health Program. The SAFE strategy for trachoma control was endorsed by the WHO in 1997, and Professor Taylor recommended the SAFE strategy be adopted in Australia. Vision 2020 Australia was launched in 2000.

The evaluation report of implementation of NAHS was released in 1994, and implementation was found to be seriously underfunded and inadequate. NACCHO replaced NAIHO in 1992, and there was wide recognition of the national importance of ACCHSs in the delivery of primary health care to Indigenous people. The nal report of the RCIADIC was released in 1991 with 339 recommendations, many of which were health-related. Changes to Medicare and the PBS improved the access by Indigenous people to health services. The Torres Strait Health Strategy was released in 1993, and an implementation report in 1996. A National Aboriginal and Torres Strait Islander Health Council was established in 1996, and commenced a review of NAHS in 1999. The Framework Agreements were concluded in 1998, and AHMC endorsed a set of National Performance Indicators and Targets in 1997.

6.1.5 The period 2000-2010

6.1.5.1 Indigenous eye health

The NATSIEHP continued to be impleme nted during 2000-01, according to the CDHAC (2001, p. 173). Regional Indigenous eye health co-ordinators were appointed in 25 of 29 regional eye health service areas in Australia to establish regular ophthalmological and optometrical specialist services. Training for co-ordinators and AHWs was conducted in QLD, NSW, VIC, and SA (CDHAC 2001, pp. 173, 434). Regular optometry clinics in Indigenous communities throughout NSW resulted from collaboration between ACCHSs, OATSIH, NSW Health, and the International Centre for Eye care Education (ICEE)80. Thirty Indigenous people received eye surgery at Weipa Hospital as a result of a partnership between the regional eye health co-ordinator, Queensland Health, ophthalmologists and OATSIH (CDHAC 2001, p. 174).

The CDHAC had a change of name to the Commonwealth Department of Health and Ageing (CDHA) during 2001-02 (CDHA 2002), and the Department published Specialist Eye Health Guidelines for use in Aboriginal and Torres Strait Islander Popul ations (OATSIH 2001).

A tender process to engage a consultant to undertake a review of implementation of the NATSIEHP was completed in 2001-02 (CDHA 2002, p. 231), and the review was conducted for OATSIH between September 2002 and July 2003 (Taylor et al 2004, p. xiii).

80 The ICEE was formed in Australia in 1998, and is involved in eye health activities in a number of countries around the world, including Australia. The website was viewed 12 July 2010,

6.1.5 The period 2000-2010 • National datasets (e.g. OATSIH S ervice Activity Reporting Data [Taylor et al 2004, pp. 85-96]);

6.1.5.1 Indigenous eye health • National consultation (Letters were sent to 39 national stakeholders OATSIH identied as having a key role in eye health care for Indigenous communities. A written submission was received from The NATSIEHP continued to be implemented during 2000-01, according to the CDHAC (2001, p. 173). nine organisations. Attachment 4); Regional Indigenous eye health co-ordinators were appointed in 25 of 29 regional eye health service areas in Australia to establish regular ophthalmological and optometrical specialist services. Training for • Regional consultations (The review visited six regions: Central Australia; the Kimberley in WA; Port co-ordinators and AHWs was conducted in QLD, NSW, VIC, and SA (CDHAC 2001, pp. 173, 434). Regular Augusta in SA; VIC; the south coast of NSW; and Cape York in QLD. One hundred and sixty-one optometry clinics in Indigenous comm unities throughout NSW resulted from collaboration between individuals from QLD, NT, WA, SA, VIC and NSW were identied in a consultation list in the nal Review ACCHSs, OATSIH, NSW Health, and the International Centre for Eye care Education (ICEE)80. Thirty Report – Attachment 3. Information was gathered using a semi-structured questionnaire for each Indigenous people received eye surgery at Weipa Hospital as a result of a partnership between the regional specic set of key informants). eye health co-ordinator, Queensland Health, ophthalmologists and OATSIH (CDHAC 2001, p. 174).

• A national workshop of Regional Indigenous Eye Health Coordinators was held in May 2003 and was The CDHAC had a change of name to the Commonwealth Department of Health and Age ing (CDHA) attended by 26 coordinators [Taylor et al 2004, p.16]. during 2001-02 (CDHA 2002), and the Department published Specialist Eye Health Guidelines for use in Aboriginal and Torres Strait Islander Populations (OATSIH 2001).

A tender process to engage a consultant to undertake a review of implementation of the NATSIEHP was completed in 2001-02 (CDHA 2002, p. 231), and the review was conducted for OATSIH between September

2002 and July 2003 (Taylor et al 2004, p. xiii). 81 The review was conducted by a team of Indigenous and non-Indigenous reviewers assembled by the Centre for Remote Health, Alice Springs (Taylor et al 2004, p. xiii), and cost OATSIH $337,430 ($239,715.0 [CDHA 2003, p. 464] plus $97,715 [CDHA 2004, p. 475]. The report was rescinded by the CDHA on 4 April 2008, and is available on the internet only for historical purposes according to the CDHA, viewed 12 July 2010,

80 The ICEE was formed in Australia in 1998, and is involved in eye health activities in a number of countries around the world,

The Commonwealth Government response supported the majority of the Review recommendations, and centred around ve key areas: Strengthening integration of eye health into primary health care services and the role of the eye health coordinator; Better utilisation of mainstream specialist services82; Data and information systems; Infrastructure support; and Trachoma (CDHA 2004a, pp. 4-13). The response enunciated six guiding principles for further evolution of the Indigenous eye health program (CDHA 2004a, p. 13):

• Eye health must be addressed as a component part of comprehensive primary health care;

• Mainstream programs and services, including specialist services, have the same responsibility to address the health needs of Indigenous Australians as other Australians and at all levels of the health system;

• Regional approache s to eye health will, over time, place more emphasis on strengthening the capacity of local primary health care services in an organised approach to chronic disease detection and management;

• Trachoma control in endemic regions requires a public health response with the involvement of public health units, primary health care services, and housing and essential services;

• Existing capacity in eye health in the Aboriginal and Torre s Strait Islander primary health care setting must be preserved; and

• Program development and implementation should be based on the best available evidence.

The Commonwealth Government response noted that the future direction of the NATSIEHP would be supported by the implementation of the National Strategic Framework for Aboriginal and Torres Strait Islander Health (NATSIHC 2004a,b), specically in Key Result Areas: One (Community controlled primary health care services); Two (Health system delivery framework); Three (A competent health workforce); Five (Environmental health); and Seven (Data, research, and evidence)83. Moreover, the response noted that the role of the Indigenous eye health coordinator in the NATSIEHP may develop into a broader specialist co-ordinator or it may become integrated into the chronic disease programs of the service/region (CDHA 2004a, p. 5).

Australia is the only developed country where trachoma is endemic, and persists mainly in rural and remote Indigenous communities (WHO 2003; Polack et al 2005; Taylor 2008, p. 232; Tellis et al 2007, 2008; Tellis et al 2009; Taylor et al 2009). Recommendation 2 of the NATSIEHP Review (Taylor et al 2004, p. xviii; Appendix J) was: Trachoma control should be the responsibility of government-run and regional public health units and be organised on a regional basis where population mobility is high. Primary health care services should be involved in the detection and treatment of trachoma under the co-ord ination of public health units.

82 The term ‘specia list’ refers to both ophthalmologists and optometrists as specialist eye health service providers (CDHA 2004a, p. 2). 83 However, Couzos et al (2008 p. 709) point out that the NSFATSIH ‘lacks policy direction for improvements in the levels of trachoma, and the health system’s responsiveness to this problem’.

41 Consistent with the guiding principles of the Commonwealth Government response to the NATSIEHP Review (CDHA 2004a), the CDHA, through the Communicable Diseases Network Australia (CDNA)84 established a Trachoma Steering Committee in September 2003 to provide recommendations on standards for surveillance and reporting of trachoma, and a mechanism to develop a nationally consistent approach to the public health management of trachoma (CDHA 2004, p. 210; CDHA 2006a, p. 44)85.

Consultations with CDNA members and key stakeholders on draft national guidelines occurred over the period 19 November 2004 to 28 February 200586, and the guidelines were endorsed by the CDNA in September 2005 (CDHA 2005, p. 179; CDHA 2006a, p. 44). A document entitled Guidelines for the public health management of trachoma in Australia was subsequently published in March 2006 (CDHA 2006a).

The Australian Government awarded a tender to the Centre for Eye Research Australia (CERA) at the University of Melbourne in 2006 to establish (in November 2006) the National Trachoma Surveillance and Reporting Unit (NTSRU) with the responsibility of providing high quality information on trachoma prevalence based on data received from state and territory jurisdictions (Tellis et al 2007, p. 14). Annual trachoma surveillance reports have been prepared since 2006 (Tellis et al 2007, 2008; Tellis et al 2009; Adams et al 2010)87. A Trachoma Reference Group (comprising 16 members from WA, SA, NT, CDHA, and NACCHO, plus co-opted members as required) approve the annual reports and provide advice to the NTSRU which in turn reports to OATSIH (Tellis et al 2007, p. 55).

Australian Governments responded to the 28th May 2003 Fifty-sixth World Health Assembly (WHA) resolution (WHA 56.26) on the ‘Elimination of avoidable blindness’ (WHO 2003) by agreeing in July 2004 at a meeting of AHMC to develop a National Eye Health Plan for Australia to promote eye health and reduce the incidence of avoidable blindness (CDHA 2005a, p. 1; CDHA 2006, p. 75)88.

The CDHA and the Victorian Department of Human Services and Health, in consultation with all states and territories, developed a Framework document that was endorsed by AHMC in November 2005 and published by the CDHA together with an accompanying Background Paper89 in 2005 (CDHA 2005a,b).

84 The CDNA was established in 1989 as a joint initiative of the NHMRC and AHMAC to, among other tasks, oversee the co-ordination of national communicable disea se surveillance (CDHA 2008a). 85 The Trachoma Steering Committee had four members from the Department of Health Western Australia, Northern Territory Department of Health and Community Services, Department of Health South Australia, and the CDHA (CDHA 2006a, p. 44). A consultant from the Department of Health Western Australia was funded $29,250.0 by OATSIH to undertake the work of the Trachoma Steering Committee (CDHA 2004, p. 477). 86 Written submissions were received from eight individuals and organisations (CDHA 2006a, p. 44). 87 NTSRU has published shorter versions of these annual reports in the CDHA Journal Communicable Diseases Intelligence (Tellis et al 2007a, 2008a; Tellis et al 2009a; Adams et al 2010). 88 WHA 56.26 urged member states: (1) to commit themselves to supporting the Global Initiative for the Elimination of Avoidable Blindness by setting up, not later than 2005, a national Vision 2020 plan, in partnership with WHO and in collaboration with non-governmental organisations and the private sector; (2) to establish a national co-ordinating committee for Vision 2020, or a national blindness prevention committee, which may include representative(s) from consumer or patient groups, to help develop and implement the plan; (3) to commence implementation of such plans by 2007 at the latest; (4) to include in such plans eective information systems with standardized indicators and periodic monitoring and evaluation, with the aim of showing a reduction in the magnitude of avoidable blindness by 2010; and (5) to support the mobilization of resources for eliminating avoidable blindness. 89 The Background Paper was prepared for an intended audience of health planners, policy makers, and others concerned with promoting eye health and preventing avoidable blindness in Australia (CDHA 2005b, p. 1).

42 Consistent with the guiding principles of the Commonwealth Government response to the NATSIEHP The consultation process during the development of the Framework Document included: a national Review (CDHA 2004a), the CDHA, through the Communicable Diseases Network Australia (CDNA)84 workshop in Canberra in March 2004 sponsored by the CDHA and convened by Vision 2020 Australia established a Trachoma Steering Committee in September 2003 to provide recommendations involving key eye health stakeholder groups; the preparation of two consultation papers90; a request for on standards for surveillance and reporting of trachoma, and a mechanism to develop a nationally written submissions from over 100 organisations and individuals nationally91; and a series of stakeholder consistent approach to the public health management of trachoma (CDHA 2004, p. 210; CDHA 2006a, p. 44)85. workshops attended by 155 individuals during July-August 2005 in the ACT, VIC, TAS, QLD, NSW, NT, WA, and SA. Thirteen of the 155 attendees appeared to have an Indigenous perspective (7 represented OATSIH, Consultations with CDNA members and key stakeholders on draft national guidelines occurred over the 5 had a community perspective, and 1 was based at NSW Indigenous Health) (CDHA 2005b, pp. 74-80). period 19 November 2004 to 28 February 200586, and the guidelines were endorsed by the CDNA in So there was at least some Indigenous input during the consultation process, although only one ACCHS92 September 2005 (CDHA 2005, p. 179; CDHA 2006a, p. 44). A document entitled Guidelines for the public and the WA Aboriginal Community Controlled Health Organisation were re presented at the regional health management of trachoma in Australia was subsequently published in March 2006 (CDHA 2006a). workshops.

The Australian Governmen t awarded a tender to the Centre for Eye Research Australia (CERA) at the The Framework document was titled National Framework for Action to Promote Eye Health and Prevent University of Melbourne in 2006 to establish (in November 2006) the National Trachoma Avoidable Blindness and Vision Loss (CDHA 2005a), and does not focus on any one specic eye condition Surveillance and Reporting Unit (NTSRU) with the responsibility of providing high quality or any particular group in Australia, although it does refer to certain population groups at particular risk information on trachoma prevalence based on data received from state and territory jurisdictions (Tellis et of developing eye disease such as: Indigenous people; older people; people with a family history of eye al 2007, p. 14). Annual trachoma surveillance reports have been prepared since 2006 (Tellis et al 2007, 2008; disease; people with diabetes; and marginalised and disadvantaged people (CDHA 2005a, p. 4)93. The Tellis et al 2009; Adams et al 2010)87. A Trachoma Reference Group (comprising 16 members from WA, SA, Framework seeks to cover the underlying issues that are common to the prevention and treatment of eye NT, CDHA, and NACCHO, plus co-opted members as required) approve the annual reports and provide disease and vision loss in general. There were 5 key areas for action in the Framework document: Reducing advice to the NTSRU which in turn reports to OATSIH (Tellis et al 2007, p. 55). the risk of eye disease and injury; Increasing early detection; Improving access to eye health care services; Improv ing the systems and quality of care; and Improving the underlying evidence base (CDHA 2005b, p. Australian Governments responded to the 28th May 2003 Fifty-sixth World Health Assembly (WHA) 7). The Framework document is the main policy instrument currently being used by the CDHA, and resolution (WHA 56.26) on the ‘Eliminat ion of avoidable blindness’ (WHO 2003) by agreeing in July 2004 at OATSIH in particular, to drive Indigenous eye health programs nationally94. a meeting of AHMC to develop a National Eye Health Plan for Australia to promote eye health and reduce the incidence of avoidable blindness (CDHA 2005a, p. 1; CDHA 2006, p. 75)88.

The CDHA and the Victorian Department of Human Services and Health, in consultation with all states and territories, developed a Framework document that was endorsed by AHMC in November 2005 and publis hed by the CDHA together with an accompanying Background Paper89 in 2005 (CDHA 2005a,b).

84 The CDNA was established in 1989 as a joint initiative of the NHMRC and AHMAC to, among other tasks, oversee the co-ordination of national communicable disease surveillance (CDHA 2008a). 85 The Trachoma Steering Committee had four members from the Department of Health Western Australia, Northern Territory Department of Health and Commu nity Services, Department of Health South Australia, and the CDHA (CDHA 2006a, p. 44). A consultant from the Department of Health Western Australia was funded $29,250.0 by OATSIH to undertake the work of the Trachoma Steering Committee (CDHA 2004, p. 477). 86 Written submissions were received from eight individuals and organisations (CDHA 2006a, p. 44). 87 NTSRU has published shorter versions of these annual reports in the CDHA Journal Communicable Diseases Intelligence (Tellis et al 2007a, 2008a; Tellis et al 2009a; Adams et al 2010). 88 WHA 56.26 urged member states: (1) to commit themselves to supporting the Global Initiative for the Elimination of Avoidable Blindness by setting up, not later than 2005, a national Vision 2020 plan, in partnership with WHO and in collaboration with 90 These were titled ‘Towards a National Eye Health Plan for Australia 2005 to 2010: Developing a National Framework for Action non-governmental organisations and the private sector; (2) to establish a national co-ordinating committee for Vision 2020, or to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss’, and ‘Eye Health in Australia’, both dated July 2005 and a national blindness prevention committee, which may include representative(s) from consumer or patient groups, to help develop labeled ‘Not for Citation’. These consultation papers were informed by a Vision 2020 Australia submission to CDHA resulting and implement the plan; (3) to commence implementation of such plans by 2007 at the latest; (4) to include in such plans eective from the national workshop of key eye health stakeholder groups in Canberra in March 2004 (CDHA 2005b, p. 72). information systems with standardized indicators and periodic monitoring and evaluation, with the aim of showing a reduction in 91 Submissions were made by 30 organisations and individuals (CDHA 2005b, pp. 73-74). the magnitude of avoidable blindness by 2010; and (5) to support the mobilization of resources for eliminating avoidable 92 Danila Dilba Aboriginal Medical Service, Darwin (CDHA 2005b, p. 79). blindness. 93 Interestingly, this document lists the NATSIEHP (for which there is no formal document as we have explained earlier) as a national initiative at three points in the document under Key area for action 1 (page 15), Key area for action 2 (page 19), and Key 89 The Background Paper was prepared for an intended audience of health planners, policy makers, and others concerned with promoting eye health and preventing avoidable blindness in Australia (CDHA 2005b, p. 1). area for action 3 (page 26). 94 Respondent 15 2010, pers. comm.., 29 April.

43 Key area for action 1 in the Framework document - ‘Reducing the risk’ - has the objective ‘Eye disease and vision loss are prevented, where possible, through addressing known modiable risk factors’, with action areas: ‘Raising public awareness’; ‘Maternal and child health’; ‘People with diabetes’; ‘Eye injury prevention’; and ‘Research’ (CDHA 2005a, pp. 9-19). Indigenous people are not referred to specically in key area for action 1 e xcept in passing as one of a number of groups for the production of targeted eye health communication materials (CDHA 2005a, p. 12)95.

Key area for action 2 in the Framework document - ‘Increasing early detection’ - has the objective ‘Treatable eye conditions are detected early, so that interventions can be applied to preserve vision and prevent any further vision loss’, with action areas: ‘Public awareness’; ‘Primary health care’; ‘People with diabetes’; and ‘Childhood screening’ (CDHA 2005a, pp. 16-19). Indigenous people are specically referred to in key area for action 2 in the context of Indigenous health checks (MBS items 704, 706, 710) and increased access to eye health assessments for those with diabetes (CDHA 2005a, pp. 17-18).

Key area for action 3 in the Framework document - ‘Improving access to eye health care services’ - has the objective ‘All Australians have equitable access to appropriate eye health care when required’, with action areas: ‘Workforce supply’; ‘Rural and remote communities’; ‘Access to cataract surgery’; ‘Aordability’; ‘Cultural accessibility’; ‘Public awareness’; and ‘Research’ (CDHA 2005a, pp. 20-26). Indigenous people are specically referred to in key area for action 3 in relation to upskilling Indigenous Health Workers in selected areas of preventive and primary care, acc essibility of subsidised spectacles programs in remote locations, use of Indigenous Liaison Ocers in mainstream health services, and eye health service delivery in partnership with Indigenous primary health care services (CDHA 2005a, pp. 23-25).

Key area for action 4 in the Framework document – ‘Improving the systems and quality of care’ – has the objective ‘Eye health care is safe, aordable, well co-ordinated, consumer-focused and consistent with internationally recognised good practice’, with action areas: ‘Service integration’; ‘Workforce development – specialist workforce’; ‘Workforce development – primary health care workforce’; and ‘Consumer focus’ (CDHA 2005, pp. 27-31). Indigenous people are specically referred to in key area for action 4 in relation to strengthening partnerships between the mainstream eye health sector and Indigenous primary health care services in urban, rural and remote settings, increased Indigenous medical ocers in the Ophthalmology Training Program, and the development of National Competency Standards for Indigenous Health Workers, including eye health competencies for each level of training and qualication (CDHA 2005a, pp. 29-30).

Key area for action 5 in the Framework document – ‘Improving the evidence base’ – has the objective ‘Eye health care policy, planning and programs are supported by high quality research and data collection systems’, with action areas: ‘Research gaps and priorities’; ‘Eye research workforce development’; ‘Knowledge transfer’; and ‘Eye health data’ (CDHA 2005a, pp. 32-34). Indigenous people, surprisingly, are not specically referred to at all in key area for action 5, and no national initiatives that impact on improving the evidence base are listed (CDHA 2005a, p. 32-34)96.

95 A National Eye Health Awareness Campaign commenced in 2006 (CDHA 2006b) 96 For example, the Co-operative Research Centre for Aboriginal Health (CRCAH), which was funded from 2003-2009, and whose work continues through the Lowitja Institute (LI) which incorporates the Co-operative Research Centre for Aboriginal and Torres Strait Islander Health (CRCATSIH) funded from 2010-2014 (Lowitja Institute 2010, viewed 20 July 2010,

44 Key area for action 1 in the Framework document - ‘Reducing the risk’ - has the objective ‘Eye disease The Framework document overall listed twenty-seven national initiatives that impact on four of the ve key and vision loss are prevented, where possible, through addressing known modiable risk factors’, with areas for action, and six of these related to Indigenous people (CDHA 2005a, pp. 9-34). However, only action areas: ‘Raising public awareness’; ‘Maternal and child health’; ‘People with diabetes’; ‘Eye injury one of these six initiatives related to Indigenous eye health, NATSIEHP, and this particular initiative has prevention’; and ‘Research’ (CDHA 2005a, pp. 9-19). Indigenous people are not referred to specically in key no document explaining what it is. area for action 1 e xcept in passing as one of a number of groups for the production of targeted eye health communication materials (CDHA 2005a, p. 12)95. The Framework document proposed that the nine jurisdictions in Australia report three yearly to AHMC on progress made on implementation of the National Eye Health Framework (CDHA 2005a, p. 38). The rst Key area for action 2 in the Framework document - ‘Increasing early detection’ - has the objective ‘Treatable Progress report was prepared for AHMC in August 2008 (CDHA 2008b). This report concentrated on eye eye conditions are detected early, so that interventions can be applied to preserve vision and prevent any health and vision care activities undertaken by governments during 2005-2008, but points out that other further vision loss’, with action areas: ‘Public awareness’; ‘Primary health care’; ‘People with diabetes’; and agencies including non-government organisations, professional associations and philanthropic bodies, ‘Childhood screening’ (CDHA 2005a, pp. 16-19). Indigenous people are specically referred to in key area for have made a substantial contr ibution towards meeting the objectives outlined in the Framework document action 2 in the context of Indigenous health checks (MBS items 704, 706, 710) and increased access to eye (CDHA 2008b p.54)97. health assessments for those with diabetes (CDHA 2005a, pp. 17-18). The Progress report addressed the ve Key action areas for each of the nine jurisdictions (CDHA 2008b). Key area for action 3 in the Framework document - ‘Improving access to eye health care services’ - has the The Commonwealth Government, through the CDHA and OATSIH, was the jurisdiction that appears to have objective ‘All Australians have equitable access to appropriate eye health care when required’, with made most progress in tackling Indigenous eye health during 2005-2008 according to the roles and action areas: ‘Workforce supply’; ‘Rural and remote communities’; ‘Access to cataract surgery’; ‘Aordability’; responsibilities agreed to by the Commonwealth, State and Territory Governments in the Framework ‘Cultural accessibility’; ‘Public awareness’; and ‘Research’ (CDHA 2005a, pp. 20-26). Indigenous people are document (CDHA 2005a, pp. 35-36). This progress included seventeen initiatives listed below, of which specically referred to in key area for action 3 in relation to upskilling Indigenous Health Workers in thirteen had total funding of $2,766,307. The funding contribution of the Indigenous specic eye health selected areas of preventive and primary care, acc essibility of subsidised spectacles programs in components of the Commonwealth funded Visiting Optometrists Scheme (VOS) and Medical Specialist remote locations, use of Indigenous Liaison Ocers in mainstream health services, and eye health Outreach Assistance Program (MSOAP) are not included in this funding total. service delivery in partnership with Indigenous primary health care services (CDHA 2005a, pp. 23-25). The seventeen initiatives were :

• $150,000 provided by CDHA under the National Eye Health Demonstration Grants Program (NEHDGP)98 Key area for action 4 in the Framework document – ‘Improving the systems and quality of care’ – has the to the International Centre for Eye care Education (ICEE) to improve awareness and accessibility to quality objective ‘Eye health care is safe, aordable, well co-ordinated, consumer-focused and consistent with eye health and vision care education resources for Indigenous communities in remote areas of Australia (CDHA internationally recognised good practice’, with action areas: ‘Service integration’; ‘Workforce development 2008b, p. 4); – specialist workforce’; ‘Workforce development – primary health care workforce’; and ‘Consumer focus’ (CDHA 2005, pp. 27-31). Indigenous people are specically referred to in key area for action 4 in • $920,000 allocated over 3 years by CDHA in December 2005 for implementation of a systematic approach relation to strengthening partnerships between the mainstream eye health sector and Indigenous to target, treat, and control trachoma in Indigenous communities (CDHA 2008b, p. 5). Initiatives included: primary health care services in urban, rural and remote settings, increased Indigenous medical ocers in the Ophthalmology Training Program, and the development of National Competency Standards for * CDHA through the Communicable Diseases Network Australia (CDNA) production and distribution to Indigenous Health Workers, including eye health competencies for each level of training and qualication health professionals and key interest groups of Guidelines for the public health management of trachoma in (CDHA 2005a, pp. 29-30). Australia (Trachoma Guidelines) (CDHA 2006a);

Key area for action 5 in the Framework document – ‘Improving the evidence base’ – has the objective * CDHA support to WA, SA and NT for training health care workers in the use of the Trachoma Guidelines and ‘Eye health care policy, planning and programs are supported by high quality research and data the extension of current trachoma control programs into areas where screening and treatment had not previously occurred; and collection systems’, with action areas: ‘Research gaps and priorities’; ‘Eye research workforce development’; ‘Knowledge transfer’; and ‘Eye health data’ (CDHA 2005a, pp. 32-34). Indigenous people, * CDHA established a National Trachoma Surveillance and Reporting Unit (NTSRU) to improve overall quality surprisingly, are not specically referred to at all in key area for action 5, and no national initiatives that and consistency of data collection and reporting of trachoma in Australia; impact on improving the evidence base are listed (CDHA 2005a, p. 32-34)96. • The CDHA funded Visiting Optometrists Scheme (VOS) was reviewed in 2005-2006, and new arrangements commenced in October 2007 whereby better access to optometric services in remote and very remote communities in priority locations, particularly Indigenous communities, was encouraged by nancial assistance to optometrists (CDHA 2007b; CDHA 2008b, pp. 26-27)99;

97 During the next reporting period, 2008-2011, an evaluation strategy will be instigated to measure national performance against the Framework objectives (CDHA 2008b, p. 54). 95 A National Eye Health Awareness Campaign commenced in 2006 (CDHA 2006b) 98 The NEHDGP is administered by the CDHA and covers eye health for all Australians (CDHA 2008c, ‘Eye Health Demonstration 96 For example, the Co-operative Research Centre for Aboriginal Health (CRCAH), which was funded from 2003-2009, and whose Grants’, viewed 22 July 2010, work continues through the Lowitja Institute (LI) which incorporates the Co-operative Research Centre for Aboriginal and Torres Strait Islander Health (CRCATSIH) funded from 2010-2014 (Lowitja Institute 2010, viewed 20 July 2010,

• The CDHA through OATSIH funded the Fred Hollows Foundation to co-ordinate ‘eye surgery blitzes’ at the Alice Springs Hospital over 3 weeks in May, September and November 2007, and 1 week in April 2008, to reduce waiting lists for eye surgery in central Australia. Additional support was also received from the RANZCO Eye Foundation. Two hundred and two additional surgeries, primarily cataract, were completed (CDHA 2008b p. 29);

• The CDHA through OATSIH funded the Central Australian Aboriginal Congress (CAAC) to pilot a 2 year project to employ a full time optometrist to delivery services and training in central Australia, focusing on the detection and treatment of diabetic retinopathy (CDHA 2008b p. 29);

• $198,896 was provided by CDHA under the NEHDGP to the ICEE to de velop and implement a training program to improve the skills and knowledge of Regional Indigenous Eye Health Co-ordinators in the NT and selected Aboriginal Health Workers from the Darwin region (CDHA 2008b, p. 29);

• The CDHA through OATSIH provided the Fred Hollows Foundation with $462,519 over 3 years from 2006 to 2009 under the EHDGP to employ an Eye Health Program Manager to develop a new model to improve integration of eye he alth services in central Australia (CDHA 2008b, p. 39)101;

• The CDHA funded the Fred Hollows Foundation $150,000 under the EHDGP to improve the co-ordination of eye health and vision care services for the Top End of the NT. The key objectives of this project were to establish a clear picture of existing services and identify gaps across the eye health and vision continuum and to trial and evaluate a co-ordinated and integrated service delivery model for eye health and vision care (CDHA 2008b, p. 39);

• The CDHA through OATSIH provided $50,000 in 2006-07 for two Indigenous workshops in May and June 2007 to promote eective models of eye health service delivery and inform participants about recent developments in OATSIH eye health policy. The participants were 86 eye health workers from 54 ACCHSs from all States and Territories (CDHA 2008b, p. 39)102;

• The CDHA through OATSIH provided $150,000 in 2005-06 for a national stock-take of eye health equipment funded by OATSIH. The resulting un-published report in February 2006 was used to develop a depreciation and maintenance schedule for eye health equipment, and to inform future equipment policies for OATSIH (CDHA 2008b, p. 39);

100 MSOAP Guidelines are published by the CDHA (2010, 2010a). Refer to Appendix L of this report for background to the MSOAP. 101 The Fred Hollows Foundation will provide $3 million towards the capital cost of additional facilities in Alice Springs (CDHA 2008a, p. 43). 102 The workshops were evaluated by a company Evolution Research (CDHA 2008a, p. 39), viewed 21 July 2010,

46 • The CDHA funded the Canning Division of General Practice in WA103 $159,970 under the EHDGP to trial and evaluate strategies to integrate eye health care for Indigenous people into mainstream general practice, and develop appropriate referral protocols (CDHA 2008b, p. 39);

• The CDHA funded the Queensland Aboriginal and Islander Health Council (QAIHC)104 $150,000 under the

EHDGP for a range of activities to strengthen integration of eye care with primary health care, and to improve eye care knowledge amongst health care providers within ACCHSs in Queensland (CDHA 2008b, pp. 39-40);

• The CDHA provided $199,990 to the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) to help fund the Indigenous Eye Health Survey (CDHA 2008b, p. 47)105;

• The CDHA through OATSIH provided $25,000 to help support specialist eye health services in remote Indigenous communities in SA while the VOS was being reviewed in 2005-06 (CDHA 2008b, p. 27);

• The CDHA funded the Limestone Coast Division of General Practice106 $53,950 under the EHDGP to provide a series of workshops for general practitioners, practice nurses and Aboriginal Health Workers to enhance their eye care skills and to improve triage of eye incidents and referral protocols (CDHA 2008c);

• The CDHA funded the Western Australian Country Health Service Goldelds $95,982 to pilot the establishment of a regional retinal screening program in partnership with local Aboriginal Community Controlled Health Organisation and eye health care providers (CDHA 2008c)107.

The Fred Hollows Foundation (FHF) commissioned Banscott Health Consulting (BHC) in 2005 ‘To assess the feasibility of establishing a Sustainable Integrated Regional Eye Service to serve the needs of the Central Australian population’ (BHC 2006, p. 3). BHC had consult ations with stakeholders involved in service provision in Central Australia, prepared an Issues Paper, convened a workshop on October 6 2005 using the Issues Paper as a basis for discussion, and prepared a nal report entitled Integrated Regional Eye Service in Central Australia: Feasibility Assessment Report (BHC 2006)108. The report concluded among other things that: eye health services in Central Australia were fragmented and ad hoc; Indige nous people were the major client group of a total population of 55-60,000 people; recruitment of a program manager was pivotal to improve co-ordination and cost-eective use of available resources; funding arrangements were unreliable; cross jurisdictional responsibilities create overlap/duplication of resources, complex reporting, and promote discord between services due to lack of overall co-ordination; and role delineation between primary and secondary care was not clearly dened (BHC 2006, p. 4-5).

103 The Canning Division of General Practice is based in the Perth suburb of Bentley (viewed 21 July 2010, < http://www.canningdivision.com.au/index.html 104 QAIHC has oces in Brisbane, Townsville and Cairns (viewed 21 July 2010,

47 Following the BHC report (BHC 2006), planning commenced in 2006 for the Central Australia Integrated Eye Health Program (CAIEHP), and involved the CDHA, Northern Territory Department of Health and Community Services (NTDHCS), CAAC, Anyinginyi Congress Aboriginal Corporation109 (ACAC), FHF, and the Eye Foundation110 (FHF 2006 p. 23; V2020A 2007, p. 7; EF 2010). The CDHA (through OATSIH) in 2006 funded the FHF $462,519.0 over 3 years to employ a program manager for the CAIEHP, as advised by the BHC report (BHC 2006, p. 4), to dleve op a model to improve integration of eye health services and to reduce the eye surgery waiting lists in Central Australia (CDHA 2008b, p. 39). The CAIEHP was launched in 2007, and planning is underway to establish a centre of eye health excellence in Alice Springs (FHF 2007, p. 5). The FHF committed to a new eye clinic at the Alice Springs Hospital as part of the CAIEHP (FHF 2009, p. 12).

The Australian Government announced on the 26 February 2009 the provision of $58.3 million over four years starting from 2009-10 for the Improving Eye and Ear Health Services for Indigenous Australians for Better Education and Employment Outcomes initiative. The eye health component of the initiative included trachoma surveillance and control activities, expansion of VOS, and intensive eye surgery sessions at Alice Springs Hospital to reduce the eye surgery waiting lists in Central Australia under the CAIEHP (CDHA 2010c)111. In a joint media release with the Minister for Families, Housing, Community Services and Indigenous A airs the former Prime Minister (Rudd 2009) announced at least 1,000 additional eye and ear surgical procedures and an increase of at least ten regional optometric teams to treat and prevent eye disease in the NT, WA, SA and other states where trachoma is identied. The Minister for Indige nous Health, Rural and Regional Health and Regional Services Delivery announced on 17 May 2010 under this $58.3 million initiative a $6.5 million expansion of VOS to 106 rural and remote Indigenous communities (Snowdon 2010a). More details of the expansion of VOS are shown in Appendix K. The same announcement by the Minister on 17 May 2010 also included $1.7 million to the West Australia Country Health Service to expand trachoma prevention and control programs to more than 85 communities, including 20 communities not previously visited in WA (Snowdon 2010a). An additional $5 million was announced for a special MSOAP for ophthalmology services in the May 2010 budget.

6.1.5.2 Broader signicant policy events

The House of Representatives Standing Committee on Family and Community A airs (HRSCFCA) published its report ‘Health is Life: Report on the Inquiry into Indigenous Health’ in May 2000 (HRSCFCA 2000). The report had 35 recommendations covering many Indigenous health-related issues including: Commonwealth responsibility for Primary Health Care (PHC); Reconciliation; Resources for Community Controlled PHC; Planning, delivery and monitoring of health and related services; Establishment of a National Council for Indigenous Health A airs to report annually to the Prime Minister; Access to MBS and PBS; Minister of Aboriginal and Torres Strait Islander A airs to report annually to Parliament on Government progress in improving the health and wellbeing of Indigenous Australians; Housing and infrastructure; Water; Food and nutrition; Substance misuse; Indigenous health services and community control; Health workforce; and Research and data collection, including the NHMRC devoting 5% of its total research budget to Indigenous health research (HRSCFCA 2000, pp. xv-xxv). The Government response to the ‘Health is Life’ Report was released in March 2001, and accepted most of the 35 recommendations (CDHAC 2001a).

109 Anyinginyi Congress Aboriginal Corporation (ACAC), located in Tennant Creek, was the third AMS incorporated on 24 August 1984, viewed 26 July 2010 110 The Eye Foundation is the research arm of RANZCO (EF 2010). 111 An intensive eye surgery session took place in Alice Springs Hospital from 19-23 April 2010. This was the ninth intensive eye surgery in Central Australia since 2007 as part of the CAIEHP. According to the Minister for Indigenous Health, Rural and Regional Health and Regional Services Delivery, the Commonwealth has committed more than $600,000 to CAIEHP since it was established, and will contribute a further $450,000 over the next three years until 2012-2013 (Snowdon 2010). 48 Following the BHC report (BHC 2006), planning commenced in 2006 for the Central Australia The CDHAC released the report ‘Better Health Care: Studies in the successful delivery of Primary Health Integrated Eye Health Program (CAIEHP), and involved the CDHA, Northern Territory Department of Health Care Services for Aboriginal and Torres Strait Islander Australians’ in October 2001 (CDHAC 2001b). This and Community Services (NTDHCS), CAAC, Anyinginyi Congress Aboriginal Corporation109 (ACAC), FHF, report examined the elements of Comprehensive Primary Health Care (CPHC) in Australia using more and the Eye Foundation110 (FHF 2006 p. 23; V2020A 2007, p. 7; EF 2010). The CDHA (through OATSIH) in than twenty Indigenous case studies delivered by stand-alone services or by a range of service providers 2006 funded the FHF $462,519.0 over 3 years to employ a program manager for the CAIEHP, as advised around Australia. The case studies included: Nganampa Health Council, SA – Sexual Health Program, by the BHC report (BHC 2006, p. 4), to develop a model to improve integration of eye health services Patient Referrals to Specialist Services, Reducing Emergency Evacuations, and Antenatal Care Program; and to reduce the eye surgery waiting lists in Central Australia (CDHA 2008b, p. 39). The CAIEHP was Wurli Wurlinjang, NT – Cervical Screening Program; Apunipima Cape York Health Council, QLD – Well launched in 2007, and planning is underway to establish a centre of eye health excellence in Alice Springs Persons Health Check Program; Townsville Aboriginal and Islander Health Services Limited, QLD – Mums (FHF 2007, p. 5). The FHF committed to a new eye clinic at the Alice Springs Ho spital as part of the CAIEHP and Babies Project; Halls Creek, WA – Alcohol Restrict ion Program; South Coast Medical Service, (FHF 2009, p. 12). NSW – General Practitioner Aboriginal Health Clinics Project; Tiwi Islands, NT – Renal Disease Program; Central Australian Aboriginal Congress, NT – Impact of collaborative planning on end-stage renal failure The Australian Government announced on the 26 February 2009 the provision of $58.3 million over four outcomes. The report concluded that CPHC service elements need to be: adequately planned and years starting from 2009-10 for the Improving Eye and Ear Health Services for Indigenous Australians for evaluated; integrated and coordinated at a local level; appropriate for the health conditions they are Better Education and Employment Outcomes initiative. The eye health component of the initiative included to address; implemented by a compete nt workforce; sustainable; and able to engage individuals trachoma surveillance and control activities, expansion of VOS, and intensive eye surgery sessions at Alice and communities in action to improve their own health (CDHAC 2001b, p. 15). Springs Hospital to reduce the eye surgery waiting lists in Central Australia under the CAIEHP (CDHA 2010c)111. In a joint media release with the Minister for Families, Housing, Community Services and The ‘National Strategic Framework for Aboriginal and Torres Strait Islander Health 2003-2013’ was Indigenous A airs the former Prime Minister (Rudd 2009) announced at least 1,000 additional eye and published by AHMC as two complementary documents in 2004 (NATSIHC 2004a,b). The National Strategic ear surgical procedures and an increase of at least ten regional optometric teams to treat and prevent eye Framework for Aboriginal and Torres Strait Islander Health (NSFATSIH) was developed over a number of disease in the NT, WA, SA and other states where trachoma is identied. The Minister for Indigenous years through broad consultations with stakeholders and from the ndings of a number of key earlier Health, Rural and Regional Health and Regional Services Delivery announced on 17 May 2010 under this reports, including the ‘National Aboriginal and Torres Strait Islander Health Strategy: Draft for Discussion, $58.3 million initiative a $6.5 million expansion of VOS to 106 rural and remote Indigenous communities February 2001’ (NATSIHC 2001), ‘A National Aboriginal Health Strategy: An Evaluation December 1994’ (Snowdon 2010a). More details of the expansion of VOS are shown in Appendix K. The same announcement (NAHSEC 1994), the ‘National Aboriginal Health Strategy’ (NAHSWP 1989), ndings of the Royal by the Minister on 17 May 2010 also included $1.7 million to the West Australia Country Health Service to Commission into Aboriginal Deaths in Custody (RCIADIC 1991a,b,c,d,e), and the ‘Bringing them home’ expand trachoma prevention and control programs to more than 85 communities, including 20 Report (HREOC 1997). The NSFATSIH has nine ‘Key Result Areas’ (KRA)112 in three groups: Group communities not previously visited in WA (Snowdon 2010a). An additional $5 million was announced for a A – Towards a more e ective and responsive health system; Group B – Inuencing the health impacts special MSOAP for ophthalmology services in the May 2010 budget. of the non-health sector; and Group C – Providing the infrastructure to improve health status. An Aboriginal and Torres Strait Islander Health Performance Framework (ATSIHPF) was developed to enable 6.1.5.2 Broader signicant policy events performance measurement and reporting of progress in Indigenous health against NSFATSIH. Two ATSIHPF reports have been published to date (AHMAC 2006, 2008). We discuss these reports later. A ‘National The House of Representatives Standing Committee on Family and Community A airs (HRSCFCA) Strategic Framework for Aboriginal and Torres Strait Islander Health 2003-2013: Australian Government published its report ‘Health is Life: Report on the Inquiry into Indigenous Health’ in May 2000 (HRSCFCA Implementation Plan 2007-2013’ was published in 2007 (CDHA 2007d)113. 2000). The report had 35 recommendations covering many Indigenous health-related issues including: Commonwealth responsibility for Primary Health Care (PHC); Reconciliation; Resources for Community The Australian Government introduced a ‘whole-of-government’ approach to Indigenous A airs in 2004, Controlled PHC; Planning, delivery and monitoring of health and related services; Establishment of a and responsibility for delivery of Indigenous specic programs was transferred to mainstream agencies. National Council for Indigenous Health A airs to report annually to the Prime Minister; Access to MBS and ATSIC and ATSIS were abolished in 2005, and their programs transferred to 16 mainstream agencies. PBS; Minister of Aboriginal and Torres Strait Islander A airs to report annually to Parliament on An Oce of Indigenous Policy Co-ordination (OIPC) was established within the Commonwealth Government progress in improving the health and wellbeing of Indigenous Australians; Housing and Department of Immigration, Multicultural and Indigenous A airs (DIMIA) to coordinate Commonwealth infrastructure; Water; Food and nutrition; Substance misuse; Indigenous health services and community Government policy development and service delivery through regional Indigenous Co-ordination Centres control; Health workf orce; and Research and data collection, including the NHMRC devoting 5% of its (ICC’s) (HREOC 2004, pp. 67-139). total research budget to Indigenous health research (HRSCFCA 2000, pp. xv-xxv). The Government response to the ‘Health is Life’ Report was released in March 2001, and accepted most of the 35 recommendations (CDHAC 2001a).

109 Anyinginyi Congress Aboriginal Corporation (ACAC), located in Tennant Creek, was the third AMS incorporated on 24 August 112 KRA One - Community controlled primary health care services; KRA Two – Health system delivery framework; KRA Three – A 1984, viewed 26 July 2010 competent health workforce; KRA Four – Emotional and social well-being (KRAs 1-4 in Group A); KRA Five – Environmental health; 110 The Eye Foundation is the research arm of RANZCO (EF 2010). KRA Six – Wider strategies that impact on health (KRAs 5-6 in Group B); KRA Seven – Data, research and evidence; KRA 111 An intensive eye surgery session took place in Alice Springs Hospital from 19-23 April 2010. This was the ninth intensive eye Eight – Resources and nance; KRA Nine – Accountability (KRAs 7-9 in Group C) (NATSIHC 2004b, p. 1). surgery in Central Australia since 2007 as part of the CAIEHP. According to the Minister for Indigenous Health, Rural and Regional 113 This was the second Australian Government Implementation Plan against the NSFATSIH (CDHA 2007d, p. 5). Health and Regional Services Delivery, the Commonwealth has committed more than $600,000 to CAIEHP since it was esta blished, and will contribute a further $450,000 over the next three years until 2012-2013 (Snowdon 2010). 49 The CDHAC released the report ‘Better Health Care: Studies in the successful delivery of Primary Health The ICC’s were required to negotiate ‘Regional Participation Agreements’ setting out the regional Care Services for Aboriginal and Torres Strait Islander Australians’ in October 2001 (CDHAC 2001b). This priorities of Indigenous peoples, as well as ‘Shared Responsibility Agreements’ (SRAs) at the community, report examined the elements of Comprehensive Primary Health Care (CPHC) in Australia using more family or clan level. These agreements were based on the principle of shared responsibility and than twenty Indigenous case studies delivered by stand-alone services or by a range of service providers involve mutual obligation or reciprocity for service delivery. Some SRAs had a focus on eye health and around Australia. The case studies included: Nganampa Health Council, SA – Sexual Health Program, Anderson’s (2006) example of the Mulan SRA highlights the problems they posed for Indigenous Patient Referrals to Specialist Services, Reducing Emergency Evacuations, and Antenatal Care Program; health planning and strategy. The commitments of COAG to addressing Indigenous disadvantage formed Wurli Wurlinjang, NT – Cervical Screening Program; Apunipima Cape York Health Council, QLD – Well the framework for the ‘whole-of-government’ approach to the delivery of services and policy Persons Health Check Program; Townsville Aboriginal and Islander Health Services Limited, QLD – Mums development, and required constructive co-operation between commonwealth, state, territory and local and Babies Project; Halls Creek, WA – Alcohol Restrict ion Program; South Coast Medical Service, governments (HREOC 2004, pp. 79-80)114. NSW – General Practitioner Aboriginal Health Clinics Project; Tiwi Islands, NT – Renal Disease Program; Central Australian Aboriginal Congress, NT – Impact of collaborative planning on end-stage renal failure The report of the NT Board of Inquiry into the protection of Aboriginal children from sexual abuse was outcomes. The report concluded that CPHC service elements need to be: adequately planned and released publicly on 15 June 2007 (Wild & Anderson 2007). The report ‘Ampe Akelyernemane Meke evaluated; integrated and coordinated at a local level; appropriate for the health conditions they are Mekarle: “Little Children are Sacred” had ninety-seven recommendations on leadership, government to address; implemented by a competent workforce; sustainable; and able to engage individuals responses, family and children’s services, health-crisis intervention, police FACS prosecutions and the and communities in action to improve their own health (CDHAC 2001b, p. 15). victim, o ender rehabilitation, bail, prevention is better than cure, health-a role in prevention, family support services, education, community education and awareness, alcohol, other substance abuse, The ‘National Strategic Framework for Aboriginal and Torres Strait Islander Health 2003-2013’ was community justice, the role of communities, employment, housing, pornography, cross-cultural practice, published by AHMC as two complementary documents in 2004 (NATSIHC 2004a,b). The National Strategic gambling, and implementation of the report (Wild & Anderson 2007, pp. 21-33). The Commonwealth Framework for Aboriginal and Torres Strait Islander Health (NSFATSIH) was developed over a number of Government was unhappy with the NT Government response to the report, and announced a national years through broad consultations with stakeholders and from the ndings of a number of key earlier emergency response to protect Aboriginal children in the NT on 21 June 2007. This led to the introduction reports, including the ‘National Aboriginal and Torres Strait Islander Health Strategy: Draft for Discussion, into the Commonwealth Parliament on 7 August 2007 the “Northern Territory National Emergency February 2001’ (NATSIHC 2001), ‘A National Aboriginal Health Strategy: An Evaluation December 1994’ Response Bill 2007” (PADPSPL 2007). The Commonwealth Chief Medical Ocers Report for 2007-2008 (NAHSEC 1994), the ‘National Aboriginal Health Strategy’ (NAHSWP 1989), ndings of the Royal stated that (CDHA 2008, p. 14): Commission into Aboriginal Deaths in Custody (RCIADIC 1991a,b,c,d,e), and the ‘Bringing them home’ As part of the Australian Government’s Northern Territory Emergency Response, 9,454 Report (HREOC 1997). The NSFATSIH has nine ‘Key Result Areas’ (KRA)112 in three groups: Group voluntary health checks were delivered to children under the age of 16 who live in the A – Towards a more e ective and responsive health system; Group B – Inuencing the health impacts prescribed areas. Oral health issues and ear diseases were the two most prominent health of the non-health sector; and Group C – Providing the infrastructure to improve health status. An issues identied through the child health checks. Other conditions associated with poor Aboriginal and Torres Stra it Islander Health Performance Framework (ATSIHPF) was developed to enable nutrition, housing and hygiene were also detected. performance measurement and reporting of progress in Indigenous health against NSFATSIH. Two ATSIHPF reports have been published to date (AHMAC 2006, 2008). We discuss these reports later. A ‘National A progress report of the Northern Territory Emergency Response (NTER) Child Health Check Initiative Strategic Framework for Aboriginal and Torres Strait Islander Health 2003-2013: Australian Government was published in December 2008 (AIHW & OATSIH 2008)115. A review of the NTER and the joint NT and Implementation Plan 2007-2013’ was published in 2007 (CDHA 2007d)113. Commonwealth Government nal response to this review were released on the 21 May 2009 (CDFaHCSIA 2009). Independent evaluation of the NT Child Health Check and Expanding Health Services Delivery The Australian Government introduced a ‘whole-of-government’ approach to Indigenous A airs in 2004, initiatives has to date produced an Evaluation Design Report (Allen & Clarke 2009), and release of a nal and responsibility for delivery of Indigenous specic programs was transferred to mainstream agencies. evaluation report is expected in early 2011 (CDHA 2010g). A nal report on results from the Child Health ATSIC and ATSIS were abolished in 2005, and their programs transferred to 16 mainstream agencies. Check and follow-up data collections was released in December 2009 (AIHW & OATSIH 2009)116. An Oce of Indigenous Policy Co-ordination (OIPC) was established within the Commonwealth Department of Immigration, Mult icultural and Indigenous A airs (DIMIA) to coordinate Commonwealth Government policy development and service delivery through regional Indigenous Co-ordination Centres (ICC’s) (HREOC 2004, pp. 67-139). 114 The Co-ordinated Care progra m was a large-scale initiative of COAG aimed at strengthening primary health care. The overarching objective of the Co-ordinated Care Trials was ‘To provide additional benets to clients and communities through co-ordination and integration of care and e ective use of resources for identied populations’ (CDHA 2008d, p.9). Benets of the Indigenous trials were achieved at a whole-of-population level and funding levels below ma instream norms. These trials provided lessons for implementation of the whole-of-government approach to Indigenous health (HREOC 2005). 115 Eye health was not mentioned in the Key Findings (p. x) or in Follow-ups (pp. xi). Table 2.4 (p. 10) included trachoma (7.3%) and visual impairment (0.7%) for 6-15 year-old children, but note (b) of Table 2.4 indicates that only 52% of children in the age range were screened for trachoma. Of the 1.3% of children who got referred to an optometrist or ophthalmologist (Table 2.5, p. 12), a 112 KRA One - Community controlled primary health care services; KRA Two – Health system delivery framework; KRA Three – A competent health workforce; KRA Four – Emotional and social well-being (KRAs 1-4 in Group A); KRA Five – Environmental health; relatively low number were seen by a specialist at the time of the report (Table 3.4, p. 22). KRA Six – Wider strategies that impact on health (KRAs 5-6 in Group B); KRA Seven – Data, research and evidence; KRA 116 Table 2.4 from the preliminary results was repeated in the nal report. At completion of the child health checks, the referral rate Eight – Resources and nance; KRA Nine – Accountability (KRAs 7-9 in Group C) (NATSIHC 2004b, p. 1). for optometrists and ophthalmologists was the same (1.2% of the children who had had eye examinations). In the Arnhem region, 2.8% of children aged 6-15 years had trachoma, and 0.5% had some visual impairment (p. 90). In Central Australia, 8% of children 113 This was the second Australian Government Implementation Plan against the NSFATSIH (CDHA 2007d, p. 5). had trachoma, and 0.8% had some visual impairment (p. 88). In the Barkly/Katherine region, 12.2% of children aged 6-15 years had trachoma, and 1.0 % had visual impairment (p. 92). In Darwin rural, 5.2% had trachoma, and 0.6 had visual impairment (p. 94).

50 The Commonwealth Government now calls the NTER ‘Closing the Gap: Northern Territory’ (CDHA 2010g)117. A Health Impact Assessment of the NTER by the Australian Indigenous Doctor’s Association (AIDA) and the Centre for Health Equity Training, Research and Evaluation (CHETRE) made a number of recommendations grouped as: measure should be stopped; measure is unlikely to be e ective in the long term; and proceed with caution (AIDA & CHETRE 2010, p. x).

The Human Rights and Equal Opportunity Commission (HREOC) Social Justice Report 2005 of the Aboriginal and Torres Strait Islander Social Justice Commissioner at that time, Tom Calma, proposed a human rights based approach to achieving Indigenous health equality within a generation (HREOC 2005)118. The rst of ve recommendations in this report stated: That the governments of Australia commit to achieving equality of health status and life expectation between Aboriginal and Torres Strait Islander and non-Indigenous people within 25 years.

The other recommendations outlined how the rst recommendation could be achieved using a targeted approach.

A Campaign for Indigenous Health Equality emerged in March 2006 from these recommendations, involving more than forty organisations and individuals guided by a Close the Gap Steering Committee for Indigenous Health Equality (CTGSCIHE) chaired by Tom Calma, and ‘Close the Gap’ was used as the catch phrase for the Campaign (HREOC 2008). The Steering Committee prepared a number of publications during the Campaign, including a Community Guide (AHRC 2010c), and a Position Paper (CTGSCIHE 2010a).

The Campaign was formally launched in Sydney on 4 April 2007 (AHRC 2010b; HREOC 2008, p.3). NACCHO and Oxfam Australia (OA) prepared a policy brieng paper in April 2007 entitled ‘Close the Gap: Solutions to the Indigenous Health Crisis facing Australia’ (NACCHO & OA 2007), and three working groups of the Steering Committee for Indigenous Health Equality developed targets (HREOC 2008). The Campaign gathered momentum.

COAG ‘rearmed its commitment to closing the outcomes gap between Indigenous people and other Australians’ on 13 April 2007 (COAG 2007, p. 7). The elected Rudd Labor Governme nt took oce in Canberra on 3 December 2007, and COAG agreed on 20 December 2007 to a partnership between all levels of government to work with Indigenous communities to ‘Close the Gap’ on Indigenous disadvantage (COAG 2007a, pp. 2-3, 11). The Australian Prime Minister, Kevin Rudd, gave an apology on behalf of all Australians to Australia’s Indigenous peoples on 13 February 2008 in Parliament House Canberra.

The Campaign culminated in a Close the Gap National Indigenous Health Equality Targets Summit in Canberra on March 18-20, 2008 (HREOC 2008). A Statement of Intent was jointly signed at the Summit on 20 March 2008 by the Prime Minister and key Indigenous and non-Indigenous stakeholders to work together to achieve equality in health status and life expectancy between Indigenous and non-Indigenous Australians by 2030 (HREOC 2008 pp. 16-17). Five groups of Close the Gap National Indigenous Health Equality Targets were proposed at the Summit: Partnership Targets; Health Status Targets; Primary Health Care and other Health Services Targets; Infrastructure Targets; and Social Determinants Targets (HREOC 2008, pp. 19-51)119.

117The WHO Commission on Social Determinants of Health released its nal report in August 2008 (CSDH 2008). The title of the report was “Closing the Gap in a Generation: Health equit y through action on the social determinants of health. 118 HREOC changed its corporate identity to the Australian Human Rights Commission (AHRC) in 2008 (AHRC 2010c). 119 Trachoma control programs expanded through implementation of the SAFE strategy were included in the Primary Health Care and Other Health Service Targets (HREOC 2008, p. 40).

51 COAG meetings in 2008 (26 March, 3 July, 2 October, 29 November) rearmed the national importance of closing the gap between Indigenous and non-Indigenous Australians (COAG 2008, 2008a, 2008b, 2008c), agreed to six targets for closing the gap across urban, rural and remote areas120, and agreed to initiatives for Indigenous Australians of $4.6 billion across early childhood development, health, housing, economic development, and remote service delivery (COAG 2008c, pp. 7-9, 13)121. The Commonwealth Government announced the establishment of the National Indigenous Health Equality Council (NIHEC) in March 2008, announced its membership in July 2008, and NIHEC held its inaugural meeting on 25-26 August 2008 in Canberra (CDHA 2010e). The 2008 COAG initiative on health was a $1.578 billion National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes (NPACGIHO) over four years beginning in 2009-10, with the Comm onwealth contributing $806 million and the States $772 million (COAG 2008c, pp. 13, 17-18; COAG 2009c). The NPACGIHO specied outcomes, outputs, and nancial arrangements from 2009-10 to 2012-2013 for the following initiatives: Tackle smoking; Healthy transition to adulthood; Making Indigenous health everyone’s business; Primary health care services that can deliver; and Fixing the gaps and improving the patient journey (COAG 2009c). All COAG jurisdictions prepared a ‘National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes: Implementation Plan’ (MCFFR 2010).

COAG meetings in 2009 (30 April, 2 July, 7 December) and 2010 (19-20 April) considered a large number of Indigenous Close the Gap policy issues, including: the operating arrangements for the Co-ordinator-General for Remote Indigenous Services (CGRIS)122, the rst CGRIS report on 4 December 2009 recommending - improved coordination of service delivery in 29 priority remote communities in areas of community governance, education and training, delivery of renal health services, and reporting (COAG 2009, pp. 11-12; COAG 2009a, p. 2; COAG 2009b, p. 13), and a progress status report addressing the CGRIS recommendations (COAG 2010, p. 17); a National Integrated Strategy for Closing the Gap in Indigenous Disadvantage (COAG 2009a, p. 2)123; a Closing the Gap Indigenous Education Action Plan (COAG 2009a, p. 3); a Closing the Gap National Remote Indigenous Food Security Strategy (COAG 2009a, p. 3; COAG 2009b, pp. 12-13); a Closing the Gap National Urban and Regional Service Delivery Strategy (COAG 2009a, p. 4); and a Closing the Gap National Partnership Agreement on Remote Indigenous Public Internet Access (COAG 2009a, pp. 4-5).

COAG agreed to a National Indigenous Reform Agreement (Closing the Gap) (NIRA) in 2008 that provides the overarching framework for the six targets that all governments have committed to achieving through their various National Agreements and National Partnerships (COAG 2008c, p. 8; COAG 2008d)124. NIRA has 27 Indigenous-specic performance indicators to measure progress against the Closing the Gap targets. The di erence between Indigenous and non-Indigenous outcomes against each of these indicators will be used by COAG to help assess progress towards the Closing the Gap targets (COAG 2008d, pp. 9-16).

120 The targets were: to close the gap in life expectancy within a generation; to halve the gap in mortality rates for Indigenous children under ve within a decade; to ensure all Indigenous four year olds in remote communities have access to early childhood education within ve years; to halve the gap in reading, writing and numeracy achievements for Indigenous children within a decade; to halve the gap for Indigenous students in year 12 attainment or equivalent attainment rates by 2020; and to halve the gap in employment outcomes between Indigenous and non-Indigenous Australians within a decade. 121 Partnership Agreements included in this Indigenous specic funding include: National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes; National Pa rtnership Agreement on Remote Service Delivery; National Partnership Agreement on Indigenous Early Childhood Development; National Partnership Agreement on the Northern Territory; and National Partnership Agreement on the East Kimberley (NIHEC 2010, p. 3). 122 Who reports to the Commonwealth Minister for Families, Housing, Community Services and Indigenous A airs (COAG 2009, pp. 11-12). 123 This includes an additional $46.4 million over four years for the ABS and AIHW to improve the evidence base and address data gaps (COAG 2009a, p. 2). 124 The NIRA is Schedule F of the Intergovernmental Agreement on Federal Financial Relations (COAG 2010a). 52 COAG meetings in 2008 (26 March, 3 July, 2 October, 29 November) rearmed the national The National Indigenous Health Equality Council (NIHEC), established in March 2008, has 15 members importance of closing the gap between Indigenous and non-Indigenous Australians (COAG 2008, 2008a, - a large majority of whom are Indigenous, was given the role of providing advice to Government on 2008b, 2008c), agreed to six targets for closing the gap across urban, rural and remote areas120, and the provision of equitable and sustainable health outcomes for Indigenous Australians (CDHA 2010e). agreed to initiatives for Indigenous Australians of $4.6 billion across early childhood development, health, The NIHEC has broad terms of reference, the rst of which is to advise the Australian Government about housing, economic development, and remote ser vice delivery (COAG 2008c, pp. 7-9, 13)121. The commitments made under the March 2008 Close the Gap Statement of Intent on achieving Indigenous Commonwealth Government announced the establishment of the National Indigenous Health Equality health equality by 2030 (AHRC 2008). The inaugural meeting of the NIHEC was held in Canberra on 25-26 Council (NIHEC) in March 2008, announced its membership in July 2008, and NIHEC held its inaugural August 2008, and the NIHEC has held 8 meetings to June 2010 (CDHA 2010e). meeting on 25-26 August 2008 in Canberra (CDHA 2010e). The 2008 COAG initiative on health was a $1.578 billion National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes (NPACGIHO) Achievements of the NIHEC to date have included (CDHA 2010e): over four years beginning in 2009-10, with the Commonwealth contributing $806 million and the States • The development and joint launch in March 2010 of a National Target Setting Instrument: Evidence $772 million (COAG 2008c, pp. 13, 17-18; COAG 2009c). The NPACGIHO specied outcomes, outputs, and Based Best Practice Guide to inform target setting in Indigenous health (NIHEC 2010), and a Child nancial arrangements from 2009-10 to 2012-2013 for the following initiatives: Tackle smoking; Healthy Mortality Target: Analysis and Recommendations report (NIHEC 2010a); transition to adulthood; Making Indigenous health everyone’s business; Primary health care services that can deliver; and Fixing the gaps and improv ing the patient journey (COAG 2009c). All COAG jurisdictions • The preparation of an Indigenous Youth Health and Wellbeing Roundtable Outcomes Report that prepared a ‘National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes: will form a foundation for developing an Indigenous youth policy framework; Implementation Plan’ (MCFFR 2010). • Recommendations to the Ministerial Council for Education, Early Child Development and Youth COAG meetings in 2009 (30 April, 2 July, 7 December) and 2010 (19-20 April) considered a large number A airs (MCEECDYA) to strengthen the draft Indigenous Education Action Plan 2010-2014; of Indigenous Close the Gap policy issues, including: the operating arrangements for the Co-ordinator-General for Remote Indigenous Serv ices (CGRIS)122, the rst CGRIS report on 4 December • Provision of advice to the NHMRC on The NHMRC Road Map II about research priorities for 2009 recommending - improved coordination of service delivery in 29 priority remote communities in Indigenous health research125; areas of community governance, education and training, delivery of renal health services, and reporting (COAG 2009, pp. 11-12; COAG 2009a, p. 2; COAG 2009b, p. 13), and a progress status report addressing • Co-convened with the National Advisory Council on Mental Health (NACMH) an Indigenous Mental the CGRIS recommendations (COAG 2010, p. 17); a National Integrated Strategy for Closing the Gap in Health Forum; Indigenous Disadvantage (COAG 2009a, p. 2)123; a Closing the Gap Indigenous Education Action Plan (COAG 2009a, p. 3); a Closing the Gap National Remote Indigenous Food Security Strategy (COAG 2009a, p. 3; • Hosted an Indigenous Health Workforce forum, and progressed work on the Health Workforce COAG 2009b, pp. 12-13); a Closing the Gap National Urban and Regional Service Delivery Strategy (COAG Target: Analysis and Recommendations Part I: Indigenous Health Workforce draft report; 2009a, p. 4); and a Closing the Gap National Partnership Agreement on Remote Indigenous Public Internet Access (COAG 2009a, pp. 4-5). • Discussions on: the Aboriginal and Torres Strait Islander Healing Foundation126; the monitoring and evaluatio n framework of the Australian Government’s Indigenous Chronic Disease COAG agreed to a National Indigenous Reform Agreement (Closing the Gap) (NIRA) in 2008 that provides Package127; the National Aboriginal and Torres Strait Islander Nutrition Strategy and Action Plan the overarching framework for the six targets that all governments have committed to achieving through (NATSINSAP) and potential options for Indigenous nutrition128; and a new national Indigenous representative body129; and their various National Agreements and National Partnerships (COAG 2008c, p. 8; COAG 2008d)124. NIRA has 27 Indigenous-specic performance indicators to measure progress against the Closing the Gap t argets. • Maintained a watching brief on the study of renal dialysis services in Central Australia130, and the The di erence between Indigenous and non-Indigenous outcomes against each of these indicators will NIHEC role in relation to the Australian Government health reform agenda131. NIHEC had discussions be used by COAG to help assess progress towards the Closing the Gap targets (COAG 2008d, pp. 9-16). about the National Health and Hospitals Reform Commission (NHHRC) Final Report with the Minister for Indigenous Health132.

120 The targets were: to close the gap in life expectancy within a generation; to halve the gap in mortality rates for Indigenous 125 Road Map II: A strategic framework for improving the health of Aboriginal and Torres Strait Islander people through research children under ve within a decade; to ensure all Indigenous four year olds in remote communities have access to early childhood (NHMRC 2010). education within ve years; to halve the gap in reading, writing and numeracy achievements for Indigenous children within a decade; 126 The Aboriginal and Torres Strait Islander Healing Foundation was incorporated on 30 October 2009 (ATSIHF 2009). to halve the gap for Indigenous students in year 12 attainment or equivalent attainment rates by 2020; and to halve the gap in 127 Closing the Gap: Tackling Chronic Disease. The Australian Government’s Indigenous Chronic Disease Package (CDHA 2009g). employment outcomes between Indigenous and non-Indigenous Australians within a decade. 12 8 NATSINSAP October 2008 update, viewed 4 August 2010, 121 Partnership Agreements included in this Indigenous specic funding include: National Partnership Agreement on Closing the

• Provision of advice to the NHMRC on The NHMRC Road Map II about research priorities for • Funding of 5 urban brokerage services to link Indigenous people with networks of mainstream Indigenous health research125; health service providers (CDHA 2007, p. 120);

• Co-convened with the National Advisory Council on Mental Health (NACMH) an Indigenous Mental • New PBS listings for medicines specic to Indigenous people, such as iron and folic acid Health Forum; supplements, thiamine, a variety of topical anti-fungal agents, • hookworm treatment, and a new treatment for chronic otitis media (CDHA 2007, pp. 120-121); • Hosted an Indigenous Health Workforce forum, and progressed work on the Health Workforce Target: Analysis and Recommendations Part I: Indigenous Health Workforce draft report; • A PBS amendment for all Indigenous people in very high risk categories to access lipid-lowering therapy at any cholesterol level (CDHA 2007, p. 121); • Discussions on: the Aboriginal and Torres Strait Islander Healing Foundation126; the monitoring and evaluation framework of the Australian Government’s Indigenous Chronic Disease • Implementation of key ndings of a national review that identied barriers in Indigenous access to Package127; the National Aboriginal and Torres Strait Islander Nutrition Strategy and Action Plan Medicare funded health services and the PBS (UKY 2006; CDHA 2008, p. 131); (NATSINSAP) and potential options for Indigenous nutrition128; and a new national Indigenous • MBS Primary Care initiatives over the period 1999-2009 specically for Indigenous people to representative body129; and improve their access to the Australian health care system (CDHA 2009a)135. The MBS initiatives included: • Maintained a watching brief on the study of renal dialysis services in Central Australia130, and the NIHEC role in relation to the Australian Government health reform agenda131. NIHEC had discussions * 1999 – health assessment for Indigenous people aged 55 and over (MBS items 704 and 706); about the National Health and Hospitals Reform Commission (NHHRC) Final Report with the * 2004 – health assessment for Indigenous people aged 15-55 (MBS item 710); Minister for Indigenous Health132. * 2006 – health assessment for Indi genous children (MBS item 708); * 2008 – follow-up allied health services for Indigenous people who have had a GP health assessment (MBS items 81300-81360)136. They may also be eligible for up to 10 follow-up services (item 10987) provided by a Practice Nurse or registered Aboriginal Health Worker.

133 Access to Medicare also allows access to other mainstream funding programs such as the Practice Incentives Program and General Practice Immunisation Incentives Program (CDHA 2005, p. 176). 134 Clients of 166 remote area Indigenous Health Services, including ACCHSs and remote services operated by States and Territories benet from this improved PBS access (CDHA 2010d). 135 The MBS items 704,706,708,710 have now been replaced by the single MBS item 715, and the MBS item 711 has been replaced by MBS item 10986 for a health assessment provided by a Practice Nurse or registered Aboriginal Health Worker, viewed 12 July 2010,

• The annual reports on Closing the Gap presented to the Commonwealth Parliament by the Prime Minister. To date, there have been two (AG 2009; AG 2010a). The second of these annual reports described progress against the six COAG approved targets (AG 2010a, pp. 9-32).

• Reports direct to COAG. For example - the COAG Reform Council ‘National Indigenous Reform Agreement: Baseline Performance Report for 2008-09’ that assessed the performance of governments against their commitments to life expectancy, child mortality, access to early childhood education, literacy and numeracy, education attainment and economic participation (COAGRC 2010); the ‘National Healthcare Agreement: baseline performance report for 2008-09’ that considered social inclusion and Indigenous health, and the COAG agreed target to halve the gap in mortality rates for Indigenous children under ve within a decade (COAGRC 2010a, pp. 193-215, 244); and the rst report from the Co-ordinator-General for Remote Indigenous Services in December 2009 (COAG 2009b, p. 13);

Overcoming Indigenous Disadvantage series of reports commissioned by COAG and produced by the Steering Committee for the Review of Government Service Provision (SCRGSP) at the Australian Government Productivity Commission (AGPC)137. The fourth report in the series entitled ‘Overcoming Indigenous Disadvantage: Key Indicators 2009’, has a framework that aligns with the six targets of COAG for Closing the Gap in Indigenous disadvantage (SCRGSP 2009). The framework has ‘priority outcomes’ at the top, and in successive layers below, ‘COAG targets and headline indicators’, ‘strategic areas for action’, and ‘strategic change indicators’ at the lowest level (SCRGSP 2009, pp. 2.1-2.7);

The Aboriginal and Torres Strait Islander Health Performance Framework (ATSIHPF) was developed under the auspice of AHMAC to provide the basis for measuring the impact of the National Strategic Framework for Aboriginal and Torres Strait Islander Health (NATSIHC 2004a,b; CDHA 2007d). Two ATSIHPF reports have been completed to date, and both described modest improvements in several indicators of Indigenous health (AHMAC 2006, p. 10; AHMAC 2008, p. 4). The ATSIHPF has three tiers of performance reecting the whole of government comprehensive primary health care approach to Indigenous health

(AHMAC 2008, p. 10):

* Tier 1 – health status and health outcomes (Measures of prevalence of disease or injury, human function, life expectancy and well being. How healthy are people? Is it the same for everyone? Wh at is the opportunity * 1999 – health assessment for Indigenous people aged 55 and over (MBS items 704 and 706); for improvement?); * 2004 – health assessment for Indigenous people aged 15-55 (MBS item 710); * Tier 2 – determinants of health status (Measures of the determinants of health including socio-economic * 2006 – health assessment for Indigenous children (MBS item 708); status, environmental factors and health behaviours. Are the factors that determine good health changing? * 2008 – follow-up allied health services for Indigenous people who have had a GP health Is it the same for everyone? Where and for whom are these factors changing?) assessment (MBS items 81300-81360)136. They may also be eligible for up to 10 follow-up services (item 10987) provided by a Practice Nurse or registered Aboriginal Health Worker. * Tier 3 – health systems performance (Measures of the health system including e ectiveness, responsiveness, accessibility and sustainability, and how they are changing over time).

136 Details viewed 12 July 2010,

55 • The Aboriginal and Torres Strait Islander Social Justice Commissioner reports annually to federal Parliament on signicant Indigenous human rights issues including health (AHRC 2010d).

The Close the Gap Steering Committee for Indigenous Health Equality (CTGSCIHE) published a ‘Shadow report on the Australian Government’s progress towards closing the gap in life expectancy between Indigenous and non-Indigenous Australians’ in February 2010 (CTGSCIHE 2010b). This report acknowledged that the Government had made signicant progress since signing the ‘Statement of Intent’ in March 2008, but that key commitments from the ‘Statement of Intent’ remained unmet (CTGSCIHE 2010b, p. 5). These commitments included:

• To developing a comprehensive, long-term plan of action, that is targeted to need, evidence-based and capable of addressing the existing inequalities in health services, in order to achieve equality of health status and life expectancy between Aboriginal and Torres Strait Islander peoples and non-Indigenous Australians by 2030;

• To ensuring the full participation of Aboriginal and Torres Strait Islander peoples and their representative bodies in all aspects of addressing their health needs; and

• To supporting and developing Aboriginal and Torres Strait Islander community controlled health services in urban, rural and remote areas in order to achieve lasting improvements in Aboriginal and Torres Strait Islander health and wellbeing.

A Policy Roundtable of senior bureaucrats held on 26 March 2010 in Adelaide by the Academy of the Social Sciences in Australia (ASSA), the Institute of Public Administration (IPAA), and the Australia and New Zealand School of Government (ANZSOG) discussed Indigenous disadvantage and ways the public service could contribute to improvements in Indigenous well-being (Edwards 2010). The public service was criticised for top-down interventionist strategies, a failure to develop the capacity of its ocers to engage and build relationships with Indig enous communities, and the mismatch between stated principles by governments and the time given to implement those principles (Edwards 2010). Podger (2010) considered the public service is disproportionately the problem, nding it hard to operate through close and consistent personal and community relationships. He suggests a new Indigenous agency with a leadership attending to bottom-up relationships with a public service culture not preoccupied with ministers, cabinet and the parliament as occurs in a portfolio department138.

There has been an increase in specic funding for Indige nous health over the twelve year period from 1997-98 to 2008-09. One indicator for this is the relative increase in ‘Actual Expenditures’ on Indigenous health reported in the CDHA annual reports over this period (CDHA 2010f). Figure 1 shows this relative increase in both ‘Actual Expenditure’ and sta levels in the Central Oce of OATSIH in Canberra139. The increase in ‘Actual Expenditures’ (not adjusted for ination) by OATSIH was from $139,861,000 in 1997-98 (CDHFS 1998, p. 128) to $571,658,000 in 2008-09 (CDHA 2009, p. 148)140.

138 Professor Podger was Secretary of the CDHFS (1995-96 to 1997-98) and CDHAC (1998-99 to 2000-01), and Dr Michael Wooldridge ) was his Minister over this six year period. 139 This data was calculated from the Financial Summaries from each annual report over this period. We have used OATSIH sta numbers in the Central Oce compared to the total CDHA sta levels for each nancial year because of the completeness of the data over this period compared with OATSIH sta levels across all eight jurisdiction s. 140 The total ‘Actual Expenditure’ for the CDHFS in 1997-98 was $21, 820,724,000 (CDHFS 1998, p. 29), and that for the CDHA in 2008-09 was $49,893,487,000 (CDHA 2009, p. 31).

56 The increase in sta numbers of the OATSIH Central Oce in Canberra over this period was from 72 in 1997-98 (CDHFS 1998, p. 246) to 223 in 2008-09 (CDHA 2009, p. 249)141. According to the AIHW Report (2010b, p. 45) the per-person spending on health and high-level residential aged care in 2006-07 was 25% higher for Aboriginal and Torres Strait Islander Australians than for other Australians. This was due to The Close the Gap Steering Committee for Indigenous Health Equality (CTGSCIHE) published a ‘Shadow the signicantly higher rates for injuries and a range of major diseases for Aboriginal and Torres Strait report on the Australian Government’s progress towards closing the gap in life expectancy between Islander Australians. It should be noted however that the bulk of expenditure on health care services for Indigenous and non-Indigenous Australians’ in February 2010 (CTGSCIHE 2010b). This report Aboriginal and Torres Strait Islander Australians is through various mainstream programs or funding acknowledged that the Government had made signicant progress since signing the ‘Statement of schemes such as the MBS, hospital care and public health activities. Intent’ in March 2008, but that key commitments fr om the ‘Statement of Intent’ remained unmet (CTGSCIHE 2010b, p. 5). These commitments included: 6.1.5.3 Summary

• To developing a comprehensive, long-term plan of action, that is targeted to need, evidence-based and This period was characterised by a concerted e ort by government s, lead by the Commonwealth, on capable of addressing the existing inequalities in health services, in order to achieve equality of health status Indigenous health policymaking, building upon preceding policy work. There was a shift towards a whole-of-government approach in 2004, with COAG addressing Indigenous disadvantage as the framework and life expectancy between Aboriginal and Torres Strait Islander peoples and non-Indigenous Australians by 2030; for the whole-of-government approach. Incorporated within this concerted Indigenous health policymaking activity, Indigenous eye health policymaking followed the whole-of-government approach. • To ensuring the full participation of Aboriginal and Torres Strait Islander peoples and their The VOS and MSOAP schemes were further rened to ensure Indigenous people living in rural and remote representative bodies in all aspects of addressing their health needs; and areas had better access to these Commonwealth funded outreach programs. A review of implementation of NATSIEHP was released in 2004 together with the Commonwealth Government response to the • To supporting and developing Aboriginal and Torres Strait Islander community controlled health services review. The Government supported the majority of the recommendations of the review. A number of in urban, rural and remote areas in order to achieve lasting improvements in Aboriginal and Torres Strait Islander initiatives on trachoma followed soon afterwards. Guidelines for the public health management of health and wellbeing. trachoma were published in 2006, and a National Trachoma Surveillance and Reporting Unit was established in Melbourne in 2006. The Australian response to the 56th World Health Assembly on the elimination of avoidable blindness in 2003 was the development in 2005 of a National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss, with ve Key Areas for Action. A progress report on implementation of the Framework was released in 2008, and addressed the ve Key Areas for Action. A feasibility report of an integrated regional eye service in Central Australia was completed in 2006, and planning for a Central Australia Integrated Eye Health Program commenced in 2006.

The NSFATSIH was published by AHMC in 2004, and Commonwealth Implementation plans and Health Performance Framework reports were released. The whole-of-government approach to Indigenous a airs made mainstream agencies responsible for the delivery of Indigenous speci c services. ATSIC and ATSIS were abolished, and ICCs established. The NTER commenced in 2007, and there was considerable reporting around this Commonwealth program; the NTER has now been renamed Closing the Gap: NT. In 2008 COAG agreed to six targets for closing the gap across urban, rural and remote areas, with $4.6 billion provided for Indigenous initiatives in early childhood development, health, housing, economic developme,nt and remote service delivery.

A NIHEC was established in 2008, and a $1.578 billion National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes commenced in 2009-10. The CDHA improved access for Indigenous people to the MBS, PBS, and mainstream health services through a number of initiatives over this period. There was a relative increase in CDHA spending for Indigenous health programs over the period 1997-8 to 2008-9.

141 The total sta in the Central Oce of CDHFS was 2,110 in 1997-98 (CDHFS 1998, p. 246) and 3,453 in 2008-09 (CDHA 2009, p. 250). 57 6.2 A case-study of water and Indigenous eye health

There is strong evidence that access to an adequate supply of clean water for all uses (e.g. drinking, washing, bathing, and recreation) is essential for human health and wellbeing (WHO 2010). A study of children living in Yalata community in SA in 1967 found a high prevalence of trachoma, which was associated with limited access to water (Hardy et al 1967). Ida Mann reportedly once said the best medicine for trachoma was water (Newfong 1989, p. vii), and Fred Hollows recommended in 1978 during the NTEHP that swimming pools be built in three Aboriginal communities in WA (Interviewee 2, 2010, pers. comm., 11 March; Interviewee 10, 2010, pers. comm., 11 April)142.

The SAFE strategy for trachoma control indicates that access to water is an essential part of the components F and E (WHO 1997), and the swimming pools which have been built in a number of Indigenous communities provide more opportunity for bathing (Audera et al 2000; HPEPL 2009; Lehmann et al 2003; Silva et al 2008). The rst swimming pool in an Indigenous community was built in Santa Teresa in 1972 by the Catholic Church, and by 1998, twelve swimming pools had been built in Indigenous communities around Australia (Audera et al 2000). A more recent report describes three swimming pools built in communities in the Anangu Pitjantjatjara Yankunytjatjara (APY) Lands in SA (HPEPL 2009).

The bene ts to health of two swimming pools in WA and three in SA Indigenous communities have been evaluated, and two studies found reduced levels of skin infection (HPEPL 2009; Lehmann et al 2003; Silva et al 2008). One of these studies also repo rted reduced levels of ear infection (Lehmann et al 2003; Silva et al 2008), although the design of this study was criticised methodologically (Roe & McDermott 2009). It was not possible to demonstrate a reduction in trachoma after the opening of the three swimming pools in SA (Mathews et al 2009). Problems with studies such as these have included: small sample sizes; population mobility; reporting bias; and a high turnover of health personn el (Mathews et al 2009). Some pools were closed for extended periods for maintenance or because of the absence of a manager for the pool (Audera et al 2000; HPEPL 2009).

To date, it has been dicult to unequivocally demonstrate the bene ts to eye health of swimming pool usage in Indigenous communities because of the multifactorial nature of the risk factors involved. However, there is a strong consensus amongst health professionals that regular access to safe and properly maintained swimming pools is a common good, bene cial to health and wellbeing, and that pools are a component of a broader response to health (Hall & Sibthorpe 2003; EHSC 2006; Rubin et al 2008).

6.3 Screening for diabetic retinopathy

Everybody with diabetes is at risk of developing retinopathy and essentially everybody will. Good control of diabetes reduces the risk speci cally with good control of blood glucose, blood pressure and blood lipids. Because timely laser treatment can prevent 98% of the blindness from vision loss, regular screening for diabetic retinopathy is recommended in countries around the world. In most countries, the frequency of screening is recommended to be once every year and this is the frequency recommended for screening of Aboriginal and Torres Strait Islander people. One exception to this global recommendation is for mainstream Australia where the better management and control of diabetes leads to a reduced incidence of complications and exams are recommended to be performed every two years.143 144

142 The communities were Jigalong, Cundalee, and Wiluna. 143 NHMRC. 1997. Working Party on Diabetic Retinopathy. Management of Diabetic Retinopathy. Clinical Practice Guidelines. AGPS. Canberra. 144 NHMRC. 2008. Australian Diabetes Societ y for the Department of Health and Ageing. Guidelines for the Management of Diabetic Retinopathy. Commonwealth of Australia. Canberra. 58 6.2 A case-study of water and Indigenous eye health Non-mydriatic retinal photography (photographs taken of the back of the eye with cameras that do not require the use of dilating drops) is a well established and widely used method of detecting retinopathy There is strong evidence that access to an adequate supply of clean water for all uses (e.g. drinking, washing, and the use of these cameras was recommended by NHMRC in 1997 & 2008 145 146 and also speci cally for bathing, and recreation) is essential for human health and wellbeing (WHO 2010). A study of children living use in Aboriginal and Torres Strait Islander communities in the 1997 review of Indigenous eye health.147 in Yalata community in SA in 1967 found a high prevalence of trachoma, which was associated with limited Similar recommendations we re made in 1998 by the Oce for Aboriginal and Torres Strait Islander Health access to water (Hardy et al 1967). Ida Mann reportedly once said the best medicine for trachoma was Services.148 However, the speci c recommendation in the Taylor report for Medicare funding or some water (Newfong 1989, p. vii), and Fred Hollows recommended in 1978 during the NTEHP that swimming other form of sustainable funding for this activity was not implemented. pools be built in three Aboriginal communities in WA (Interviewee 2, 2010, pers. comm., 11 March; Interviewee 10, 2010, pers. comm., 11 April)142. OATSIH funded the purchase of a number of retinal cameras that were placed in Aboriginal Medical Services and in many instances, Aboriginal Health Workers or Regional Eye Health Co-ordinators were trained to The SAFE strategy for trachoma control indicates that access to water is an essential part of the operate these cameras. In the absence of sustainable funding for the taking of the retinal photographs, components F and E (WHO 1997), and the swimming pools which have been built in a number of almost all these programs stopped with one or two exceptions such as in the Kimberly.149 The 2003 Indigenous communities provide more opportunity for bathing (Audera et al 2000; HPEPL 2009; Lehmann report by Taylor & Ewald recommended that there was an “optimal” integration of the specialist et al 2003; Silva et al 2008). The rst swimming pool in an Indigenous community was built in Santa Teresa services into the primary health care to manage “diseases such as diabetes”. This diu sed any further in 1972 by the Catholic Church, and by 1998, twelve swimming pools had been built in Indigenous responsibility for collecting retinal photographs, although a recommendation was made for the communities around Australia (Audera et al 2000). A more recent report describes three swimming remuneration of ophthalmologists who read fundus photographs and that this should be in the form pools built in communities in the Anangu Pitjantjatjara Yankunytjatjara (APY) Lands in SA (HPEPL 2009). of a Medicare Item Number. The Government’s response to this review recognised the importance of regular screening for diabetic eye disease and referred the request for Medicare funding for the reading of The bene ts to health of two swimming pools in WA and three in SA Indigenous communities have been photographs to Health Policy Advisory Committee of Technology (HealthPACT) but no further action was evaluated, and two studies found reduced levels of skin infection (HPEPL 2009; Lehmann et al 2003; Silva et taken. There was no ment ion of funding for the actual sta required to take the photographs. al 2008). One of these studies also reported reduced levels of ear infection (Lehmann et al 2003; Silva et al 2008), although the design of this study was criticised methodologically (Roe & McDermott 2009). It was not The 2003 Horizon Scanning Report prepared for the HealthPACT, a sub committee of the Medical Services possible to demonstrate a reduction in trachoma after the opening of the three swimming pools in SA Advisory Committee (MSAC), concluded that “screening with either mydriatic or non-mydriatic retinal (Mathews et al 2009). Problems with studies such as these have included: small sample sizes; population photography by a mobile clinic in rural areas was found to be cost-eective”.150 mobility; reporting bias; and a high turnover of health personnel (Mathews et al 2009). Some pools were closed for extended periods for maintenance or because of the absence of a manager for the pool (Audera et The NIEHS also found only 20% of Indigenous people with diabetes had had an eye exam in the al 2000; HPEPL 2009). preceding 12 months.151 Applications have been made to MSAC for Medicare support for non-mydriatic screening on at least three occasions since 1997 and at the time of writing, a further application has just To date, it has been dicult to unequivocally demonstrate the bene ts to eye health of swimming pool been lodged. usage in Indigenous communities because of the multifactorial nature of the risk factors involved. However, there is a strong consensus amongst health professionals that regular access to safe and properly maintained swimming pools is a common good, bene cial to health and wellbeing, and that pools are a component of a broader response to health (Hall & Sibthorpe 2003; EHSC 2006; Rubin et al 2008).

6.3 Screening for diabetic retinopathy

Everybody with diabetes is at risk of developing retinopathy and essentially everybody will. Good control of diabetes reduces the risk speci cally with good control of blood glucose, blood pressure and blood lipids. 143 NHMRC. 1997. Working Party on Diabetic Retinopathy. Management of Diabetic Retinopathy. Clinical Practice Guidelines. AGPS. Because timely laser treatment can prevent 98% of the blindness from vision loss, regular screening for Canberra. diabetic retinopathy is recommended in countries around the world. In most countries, the frequency of 144 NHMRC. 2008. Australian Diabetes Society for the Department of Health and Ageing. Guidelines for the Management of Diabetic Retinopathy. Commonwealth of Australia. Canberra. screening is recommended to be once every year and this is the frequency recommended for 145 Ibid. screening of Aboriginal and Torres Strait Islander people. One exception to this global 14 6 Ibid. recommendation is for mainstream Australia where the better management and control of diabetes 147 Taylor, HR. 1997. Eye Health in Aboriginal and Torres Strait Islander Communities. Canberra, Commonwealth of Australia. leads to a reduced incidence of complicati ons and exams are recommended to be performed every two 148 Kimberley Aboriginal Medical Services’ Council. 1998. Recommendations for Clinical Care Guidelines on the Management of Non-Insulin-Dependent Diabetes in Aboriginal and Torres Strait Islander Popula tions. Canberra, Commonwealth of Australia. years.143 144 149 Taylor, V. Ewald, D., Liddle, H., Warchiver, I. 2004. Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program. Canberra, Commonwealth of Australia. 150 Australia & New Zealand Horizon Scanning Network. 2005. National Horizon Scanning Unit Horizon Scanning Report: The 142 The communities were Jigalong, Cundalee, and Wiluna. detection of diabetic retinopathy utilising retinal photography in rural and remote area s in Australia, October 2004, 143 NHMRC. 1997. Working Party on Diabetic Retinopathy. Management of Diabetic Retinopathy. Clinical Practice Guidelines. AGPS. Commonwealth of Australia. Canberra. 151 Taylor HE. 2009. National Indigenous Eye Health Survey – Minum Barreng (Tracking Eyes). Melbourne, Indigenous Eye Health 144 NHMRC. 2008. Australian Diabetes Society for the Department of Health and Ageing. Guidelines for the Management of Diabetic Unit, Melbourne School of Population Health in collaboration with the Centre for Eye Research Australia and the Vision CRC [cited Retinopathy. Commonwealth of Australia. Canberra. 2010 17 February]. Available from http://www.iehu.unimelb.edu.au. 59 Non-mydriatic retinal photography (photographs taken of the back of the eye with cameras that do not 7.0 FINDINGS – INTERVIEWS require the use of dilating drops) is a well established and widely used method of detecting retinopathy and the use of these cameras was recommended by NHMRC in 1997 & 2008 145 146 and also speci cally for 7.1 Introduction use in Aboriginal and Torres Strait Islander communities in the 1997 review of Indigenous eye health.147 Similar recommendations we re made in 1998 by the Oce for Aboriginal and Torres Strait Islander Health This section is divided into 5 parts namely: Services.148 However, the speci c recommendation in the Taylor report for Medicare funding or some • The aims of the research. other form of sustainable funding for this activity was not implemented. • Respondent details and interview themes. • 1976-1979 National Trachoma and Eye Health Program - Respondents’ perspectives about OATSIH funded the purchase of a number of retinal cameras that were placed in Aboriginal Medical Services Indigenous eye health policies (7.2). and in many instances, Aboriginal Health Workers or Regional Eye Health Co-ordinators were trained to • 1990-2010 Commonwealth public servant and consultant perspectives of Indigenous eye health operate these cameras. In the absence of sustainable funding for the taking of the retinal photographs, policies (7.3). almost all these programs stopped with one or two exceptions such as in the Kimberly.149 The 2003 • 1990-2010 - Fred Hollows Foundation, Royal Australian and New Zealand College of report by Taylor & Ewald recommended that there was an “optimal” integration of the specialist Ophthalmologists, Alice Springs Hospital Eye Department perspectives of Indigenous eye health services into the primary health care to manage “diseases such as diabetes”. This diu sed any further policies (7.4). responsibility for collecting retinal photographs, although a recommendation was made for the remuneration of ophthalmologists who read fundus photographs and that this should be in the form 7.1.1 The aims of the research of a Medicare Item Number. The Government’s response to this review recognised the importance of regular screening for diabetic eye disease and referred the request for Medicare funding for the reading of The aims of the research were to: photographs to Health Policy Advisory Committee of Technology (HealthPACT) but no further action was 1. Describe the development of Indigenous eye health programs and policy from the National taken. There was no mention of funding for the actual sta required to take the photographs. Trachoma and Eye Health Program forward; 2. Identify the key barriers and facilitators to eective policy and program development; and The 2003 Horizon Scanning Report prepared for the HealthPACT, a sub committee of the Medical Services 3. Identify strategies for future systems reform in this eld. Advisory Committee (MSAC), concluded that “screening with either mydriatic or non-mydriatic retinal photography by a mobile clinic in rural areas was found to be cost-eective”.150 7.1.2 Respondent details and interview themes The NIEHS also found only 20% of Indigenous people with diabetes had had an eye exam in the preceding 12 months.151 Applications have been made to MSAC for Medicare support for non-mydriatic The details of the 23 respondents are described in section 5.2.3 of the Methods on page 4. The individual screening on at least three occasions since 1997 and at the time of writing, a further application has just interviews contained four themes related to the aims of the research. They were: been lodged. a) Respondents’ role in policy development (re lated to Aim no 1); b) Policy processes in Indigenous eye health (related to Aim no 1); c) Evidence and resources (related to Aim no 2); and d) Implementation and Other Issues (related to Aim no 3)

The accounts of the respondents who were associated with the 1976-1979 National Trachoma and Eye Health Program and afterwards in the area of Indigenous health, are shown separately (see 7.2) to respondents who were involved in Indigenous eye health post NTEHP. A timeline of signi cant events/policy

143 NHMRC. 1997. Working Party on Diabetic Retinopathy. Management of Diabetic Retinopathy. Clinical Practice Guidelines. AGPS. making is at page 11 as a reference point while reading the interview ndings. Canberra. 144 NHMRC. 2008. Australian Diabetes Society for the Department of Health and Ageing. Guidelines for the Management of Diabetic 7.2 1976-1979 National Trachoma and Eye Health Program - Respondents’ perspectives about Retinopathy. Commonwealth of Australia. Canberra. Indigenous eye health policies 145 Ibid. 146 Ibid. 147 Taylor, HR. 1997. Eye Health in Aboriginal and Torres Strait Islander Communities. Canberra, Commonwealth of Australia. 7.2.1 Respondents’ role in policy development 148 Kimberley Aboriginal Medical Services’ Council. 1998. Recommendations for Clinica l Care Guidelines on the Management of Non-Insulin-Dependent Diabetes in Aboriginal and Torres Strait Islander Populations. Canberra, Commonwealth of Australia. The seven respondents (4 non-Aboriginal males, 2 Aboriginal males and 1 Aboriginal female) 149 Taylor, V. Ewald, D., Liddle, H., Warchiver, I. 2004. Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program. Canberra, Commonwealth of Australia. associated with the National Trachoma and Eye Health Program were also at various times associated 150 Australia & New Zealand Horizon Scanning Network. 2005. National Horizon Scanning Unit Horizon Scanning Report: The with organisations such as Aboriginal and Torres Strait Islander Health Organisations, ACCHSs, Central detection of diabetic retinopathy utilising retinal photography in rural and remote areas in Australia, October 2004, Australian Aboriginal Congress, academic institutions and State and Commonwealth Departments. Commonwealth of Australia. Their collective experience in Indigenous health is considerable, the longest individual period being 40 151 Taylor HE. 2009. National Indigenous Eye Health Survey – Minum Barreng (Tracking Eyes). Melbourne, Indigenous Eye Health years. Their initial roles w ere either located within the NTEHP or they were inuenced by or worked closely Unit, Melbourne School of Population Health in collaboration with the Centre for Eye Research Australia and the Vision CRC [cited 2010 17 February]. Available from http://www.iehu.unimelb.edu.au. with members of the NTEHP. 60 All the respondents considered Indigenous eye health very important as a result of their involvement with the NTEHP. Other factors were that Aboriginal organisations had the potential to inuence Aboriginal health, their rst hand knowledge that eye health was a major problem, and the NTEHP could make a dierence and be used as a guide for other problems. One respondent observed:

Eye health was very important at that time. Fred [Hollows] said people thought blindness was a • The aims of the research. natural progression. Fred said it didn’t have to be like this. Many of Fred’s colleagues were • Respondent details and interview themes. shocked about trachoma, only this was so (Respondent 06). • 1976-1979 National Trachoma and Eye Health Program - Respondents’ perspectives about Indigenous eye health policies (7.2). Community people also worked on the NTEHP. There were 5 to 6 AMS programs running at the same • 1990-2010 Commonwealth public servant and consultant perspectives of Indigenous eye health time which became an example of community control. The NTEHP also recognised the need to treat policies (7.3). Aboriginal people in bush camps and that more complex training was required in primary health as well as • 1990-2010 - Fred Hollows Foundation, Royal Australian and New Zealand College of eye health. Ophthalmologists, Alice Springs Hospital Eye Department perspectives of Indigenous eye health policies (7.4). Some respondents contributed to the NTEHP Report (RACO 1980) which had far reaching eects beyond eye health, such as the other services that the NTEHP provided to rural and remote Australians. The Report brought attention to the poor health and living conditions of Indigen ous people and the worth of a ‘good’ AMS.

Members of the NTEHP were all like-minded people who had enjoyed good leadership during the Program. Some noted there had been a need to ‘stir up’ the AMS movement at the time, and emphasised the importance of treating people with respect and recognising the dierences between language groups and country. They stated that the NTEHP was one of the rst major programs that led to many other instances of applying policies to need in all areas of health, which impacted on State and Federal programs.

The NTEHP and the subsequent Trachoma Program shaped these respondents’ thinking because the NTEHP exposed the fact that poor eye sight is not normal. Consequently, Indigenous eye health gained importance for these respondents who lobbied for the surgery program to continue. Certain members of the NTEHP sought recognition that a national coordination unit was required to oversight co-o rdination of communities, clinics, eye teams in the eld, regional hospitals and the central areas.

However it was obvious to some respondents that their thinking about the relative priority of Indigenous eye health diered from Government agencies, and other doctors involved in Indigenous health in particular, who had their own agenda in areas such as diabetes or heart disease. One respondent stated: They had a body part approach and a holistic approach was not considered fashionable. Responding to chronic disease was not advisable and therefore eye health was not given the priority it deserved at that time (Respondent 01).

7.2.2 Policy processes in Indigenous eye health

In recalling the time leading up to the NTEHP respondents noted that after 1967 the Federal Government directed Aboriginal aairs including health. And only after the Redfern AMS was set up in 1971 did State Governments introduce Aboriginal agencies. Fred Hollows helped initiate the Redfern AMS, guided eye health services for Aboriginal people, and brought into focus that eye health was a major problem.

61 In 1973 the CDAA was established followed by the VOS in 1975 and NAIHO in 1976. From 1976 to 1979 the Commonwealth funded NTEHP administered by RACO was rolled out. Respondents considered this Program resulted from Fred Hollows’ drive, and his inuence with certain politicians. They observed, from this experience, that key individuals need to be in the right place at the right time to inuence government ministers in policy making.

The respondents who were involved in the 1978/79 enquiry into Aboriginal health initiated by Prime Minister Fraser lobbied the Prime Minister to make him aware of their opposition to separating ACCHSs and Primary Health Programs.

Extent of Indigenous people’s involvement in policy development and implementation

In considering the extent of Aboriginal people’s involvement in implementing policies at the time of the NTEHP one respondent said that the Aboriginal people were involved in all aspects of the Program. For example, consultations were carried out with ACCHSs and the local community people were employed as team members. There was local community control in the Program and community people communicated with the non-Indigenous professionals in State and Territory government departments about the Program. Debrie ng sessions considered any problems, and they were rare. While some resentment existed at the time about ‘blow-ins’ from the outside, the NTEHP introduced a continuing relationship with communities.

Another respondent considered there was not sucient Aboriginal involvement in developing policies at the time of the NTEHP, although certain processes existed through NAIHO. There was a lack of ‘forward going energy’ by key individuals, and community drive to address issues.

Relationship between Federal, State and Territory Indigenous policy makers

Strained relationships existed between Federal and State Governments at all levels of the bureaucracy, some respondents noting the perennial problem of the State or Territory withdrawing funds and the Commonwealth left with the responsibility for funding programs.

Barriers and enablers of policy development and implementation

The respondents considered that the barriers which aected the priority attached to Indigenous eye health development and policy implementation included the Federal and State issues of funding and responsibility, as well as ‘crippled policy making processes’ at Indigenous and non-Indigenous levels. In addition various government ministers had other priorities, due to the diculty of focusing on Indigenous eye health when no constituency existed for this. The barriers the NTEHP encountered on the ground were the State Branches of the College of Ophthalmologists, the agitators in bureaucracies who refused to let in the NTEHP, and the Station Managers. Those who enabled development and implementation of policies were the Indigenous people, ACCHs, the NTEHP, and journalists who organised publicity.

7.2.3 Evidence and resources

At the time of the NTEHP evidence was a part of the whole policy making process. The NTEHP (RACO 1980) Report contained wide ranging recommendations from improving living conditions to the provision of health services and continuing the NTEHP. The CDH initiated another report in late 1983.

62 The recommended option was a national secretariat to oversee the development of a revitalised NTEHP with a national eld program, national data collection and an epidemiological surveillance unit. Following a third review in 1985 the Minister of the day agreed to the continuation of existing programs. In addition, the 1989 NAHS contained 3 goals and 7 strategies for Indigenous eye health.

Under ATSIC (1990-2005) the Indigenous controlled Trachoma and Eye Health Committees in QLD, SA and NT continued to be funded. Community screening for trachoma made up a large component of their workload. Specialist eye health services in WA, Tasmania, NSW and VIC operated on an ad hoc basis. The Australian Army undertook exercises to reduce a backlog of eye surgery cases in Alice Springs in 1994, in Katherine in 1995 and the Tiwi Islands and Maningrida in 1996 but could not prov ide on-going or routine care. In 1997 the trachoma teams were abolished and replaced by a regional program model. Fred Hollows had concluded his trachoma and Indigenous eye health work in Australia in the late 1980s except for providing eye care to the people of Bourke. The FHF was ocially launched on 3 September 1992 and Fred Hollows died in 1993.

In thinking about the resources which were available for the work of the State-based Trachoma and Eye Health Committees, one respondent considered that initially the number of people working on the NTEHP and the nancial resources were adequate. The unforeseen setbacks encountered tended to be sorry business and oods. However, even when nancial resources were reduced people still kept working. There was a lot of voluntary work, improvisation, and strong advocacy by RACO. Another respondent added that although most policies had fallen into disuse by mid-1980, a number had been integrated into ACCHSs and other health services. These committees ended in 1997.

7.2.4 Implementing the National Trachoma and Eye Health Program policies

Respondents commented that the NTEHP policies were implemented almost immediately and initially were ‘overwhelmingly successful’. Aboriginal people and health experts worked together and Referral Service Centres referred clients to the ACCHSs and beyond. The NTEHP legacy is there are more than 140 ACCHSs throughout Australia. However, some associated policies were not implemented because they encountered the Federal/State responsibility divide. Other policies were not implemented due to brie ngs provided to politicians by bureaucrats. Attention wavered when the NTEHP concluded and the responsibility for the provision of on-going eye care passed from the Commonwealth to the States.

7.2.5. The role of the community controlled health services

When asked to comment on the role played by the Community Controlled Health Services during the NTEHP respondents considered that they as well as Fred Hollows had played a major role – people on the ground listened to Fred. The NTEHP was successful because it was community co ntrolled and consequently self determination ensued.

7.2.6 Respondents’ involvement in policy development and implementation after 1980

The respondents’ subsequent work since 1980 has been in advocating for Indigenous eye health, formulating reports which contribute to shaping State and Commonwealth Government Indigenous eye and primary health policies, developing evidence-based advocacy with governments and oppositions, working with community health clinics, and organising regional co-ordination of State/private services.

63 The recommended option was a national secretariat to oversee the development of a revitalised In particular, their involvement in policy making has included participation in the Ministerial review into the NTEHP with a national eld program, national data collection and an epidemiological surveillance unit. continuation of the Trachoma Program 1983/84; the 1989 National Aboriginal Health Strategy and its Following a third review in 1985 the Minister of the day agreed to the continuation of existing review in 1999; Aboriginal Medical Service programs in 1990; the 1997 National Review of Indigenous Eye programs. In addition, the 1989 NAHS contained 3 goals and 7 strategies for Indigenous eye health. Health, and the National Strategic Framework for Aboriginal and Torres Strait Islander Health in 2004.

Under ATSIC (1990-2005) the Indigenous controlled Trachoma and Eye Health Committees in QLD, SA and The respondents observed that in the 1980s and 1990s there was not a great deal of interest in NT continued to be funded. Community screening for trachoma made up a large component of Indigenous health, adding that there was a reduction in eye health funding around 1990 when ATSIC their workload. Specialist eye health services in WA, Tasmania, NSW and VIC operated on an ad hoc basis. wanted to reduce community control. Although government ministers might have been supportive of The Australian Army undertook exercises to reduce a backlog of eye surgery cases in Alice Springs in 1994, NACCHO which replaced NAIHO in 1992, Indigenous eye health was not a high priority in spite of the in Katherine in 1995 and the Tiwi Islands and Maningrida in 1996 but could not prov ide on-going or recognition by some that Indigenous health is a moral issue. At that time regional health services were routine care. In 1997 the trachoma teams were abolished and replaced by a regional program model. predominantly for non-Indigenous people . The general thinking was that money spent on Indigenous Fred Hollows had concluded his trachoma and Indigenous eye health work in Australia in the late 1980s health was wasted money. In addition, the State/Federal divide meant there was competition for funding except for providing eye care to the people of Bourke. The FHF was ocially launched on 3 September 1992 for other problem areas. and Fred Hollows died in 1993. The 17 recommendations contained in the 1997 National Review of Indigenous Eye Health related to In thinking about the resources which were available for the work of the State-based Trachoma and primary eye care services, specialist eye services, speci c eye conditions, the environment and a national Eye Health Committees, one respondent considered that initially the number of people working on the information network. Following the recommendat ions in the Report funding for State based eye health NTEHP and the nancial resources were adequate. The unforeseen setbacks encountered tended to be sorry services ceased and major advances were made in developing regional implementation plans in business and oods. However, even when nancial resources were reduced people still kept working. several States. In addition the one treatment drug for trachoma, Azithromycin, was added to the There was a lot of voluntary work, improvisation, and strong advocacy by RACO. Another respondent PBS for trailing. In 1997 the Minister of the day abolished the remaining State-based trachoma teams on added that although most policies had fallen into disuse by mid-1980, a number had been integrated advice from his department and these were replaced by the National Aboriginal and Torres Strait Islander Eye into ACCHSs and other health services. These committees ended in 1997. Health Program.

7.2.4 Implementing the National Trachoma and Eye Health Program policies Respondents also noted that there were implementation issues with OATSIH following the 1997 National Review of Indigenous Eye Health – recommendations were partially carried out, ignored, or considered Respondents commented that the NTEHP policies were implemented almost immediately and initially on-going. The important recommendation for an annual national overview and for accountability were ‘overwhelmingly successful’. Aboriginal people and health experts worked together and Referral reporting to the Australian Health Ministers’ Advisory Council was not adopted. Service Centres referred clients to the ACCHSs and beyond. The NTEHP legacy is there are more than 140 ACCHSs throughout Australia. However, some associated policies were not implemented because they The current approach in inuencing Indigenous eye health policies is to inuence government ministers encountered the Federal/State responsibility divide. Other policies were not implemented due to brie ngs of the day. Emphasis is on lobbying the policy makers (politicians and bureaucrats) at the State and Federal provided to politicians by bureaucrats. Attention wavered when the NTEHP concluded and the level as well as at the community level, and producing reports to obtain lasting import on the ground. It responsibility for the provision of on-going eye care passed fro m the Commonwealth to the States. is important to engage government ministers with a strategic approach including international experience. One respondent observed that creating evidence-based reports containing eye care health economics is 7.2.5. The role of the community controlled health services important in mainstream eye health policy making and it is important to employ the same approach in the Indigenous eye health policy process. Another respondent considered that supported research funding When asked to comment on the role played by the Community Controlled Health Services during the has helped change policies, and better links now exist with the OATSIH and NACCHO. NTEHP respondents considered that they as well as Fred Hollows had played a major role – people on the ground listened to Fred. The NTEHP was successful because it was community controlled and When asked about the role played by ACCHSs in developing and impl ementing Indigenous eye health consequently self determination ensued. policies respondents considered that: The Aboriginal Medical Services were a barrier to change as they were too interested in their own 7.2.6 Respondents’ involvement in policy development and implementation after 1980 survival, but the Royal Australian College of Ophthalmologists could be a real cause for good (Respondent 11). The respondents’ subsequent work since 1980 has been in advocating for Indigenous eye health, formulating reports which contribute to shaping State and Commonwealth Government Stand alone projects cannot work. Task Force projects should be integrated into the community Indigenous eye and primary health policies, developing evidence-based advocacy with structure to engage local champions in the work. Aboriginal Medical Servi ces played no real governments and oppositions, working with community health clinics, and organising regional pro-active role when the National Trachoma and Eye Health Program concluded. They did however co-ordination of State/private services. integrate some eye health into their services with some access to ophthalmological services. Much of the policy work of the Aboriginal Medical Services was taken over by national provider lobby groups such as the Australian Indigenous Doctors’ Association, the National Aboriginal and Islander Health Organisation and the National Abo riginal Community Controlled Health Organisation (Respondent 10). 64 In particular, their involvement in policy making has included participation in the Ministerial review into the Another respondent noted the huge variation of ACCHSs across the country adding that some need a wider continuation of the Trachoma Program 1983/84; the 1989 National Aboriginal Health Strategy and its view and others have issues and problems of power and control in decision making. review in 1999; Aboriginal Medical Service programs in 1990; the 1997 National Review of Indigenous Eye Health, and the National Strategic Framework for Aboriginal and Torres Strait Islander Health in 2004. 7.2.7 Concluding comments

The respondents observed that in the 1980s and 1990s there was not a great deal of interest in In oering concluding comments respondents considered that: recommendations and guidelines Indigenous health, adding that there was a reduction in eye health funding around 1990 when ATSIC contained in many existing reports (for example, Taylor 1997; OATSIH 2001; Taylor et al 2004; CDHA 2005a; wanted to reduce community control. Although government ministers might have been supportive of CDHA 2006a) should be implemented across Australia; an Indigenous Health Department - a statutory NACCHO which replaced NAIHO in 1992, Indigenous eye health was not a high priority in spite of the authority independent of government funding and funded through the GST contribution should be created; recognition by some that Indigenous health is a moral issue. At that tim e regional health services were and an Indigenous Unit should be included in the former Prime Minister’s (Kevin Rudd) proposed health predominantly for non-Indigenous people. The general thinking was that money spent on Indigenous network. health was wasted money. In addition, the State/Federal divide meant there was competition for funding for other problem areas. 7.3 1990 - 2010 Commonwealth public servant and consultant perspectives of Indigenous eye health policies 7 The 17 recommendations contained in the 1997 National Review of Indigenous Eye Health related to primary eye care services, specialist eye services, speci c eye conditions, the environment and a national 7.3.1 Respondents’ role in policy development information network. Following the recommendations in the Report funding for State based eye health services ceased and major advances were made in developing regional implementation plans in ATSIC was established in 1990, and abolished in 2005. Eight respondents (3 non-Indigenous females, several States. In addition the one treatment drug for trachoma, Azithromycin, was added to the 3 males, and 2 Indigenous males) provided perspectives of Indigenous eye health policies from the 1990s PBS for trailing. In 1997 the Minister of the day abolished the remaining State-based trachoma teams on to 2010 drawing on their experience while employed in the Commonwealth’s Indigenous health advice from his department and these were replaced by the National Aboriginal and Torres Strait Islander Eye portfolios. The perspectives of 3 non-Indigenous respondents (1 female, 2 males) who have been involved in Health Program. Indigenous eye health pol icies in consultancy roles are also included.

Respondents also noted that there were implementation issues with OATSIH following the 1997 National 7.3.2. Policy processes in Indigenous eye health Review of Indigenous Eye Health – recommendations were partially carried out, ignored, or considered on-going. The important recommendation for an annual national overview and for accountability Following the NAHS in 1989, the respondents were involved during the 1990s, in a variety of programs reporting to the Australian Health Ministers’ Advisory Council was not adopted. such as: designing a more systematic approach to health interventions; applying for ATSIC grants for ACCHSs; sexual health, HIV/AIDS and renal health; the Trachoma Program until its conclusion in 1997; the The current approach in inuencing Indigenous eye health policies is to inuence government ministers National Review of Indigenous Eye Health in 1997, and the National Aboriginal and Torres Strait Islander of the day. Emphasis is on lobbying the policy makers (politicians and bureaucrats) at the State and Federal Eye Health Program Review in 2003. level as well as at the community level, and producing reports to obtain lasting import on the ground. It is important to engage government ministers with a str ategic approach including international experience. Indigenous health debates in the 1990s centred around eye health and its over emphasis over other illnesses One respondent observed that creating evidence-based reports containing eye care health economics is with higher burden of disease, the need for a long term view of primary health care, and conict with important in mainstream eye health policy making and it is important to employ the same approach in the competing vertical programs and primary health care. One respondent commented: Indigenous eye health policy process. Another respondent considered that supported research funding has helped change policies, and better links now exist with the OATSIH and NACCHO. A focus on the big burden of disease and less focus on body parts approach was needed and we needed the best evidence base available to do this (Respondent 07). When asked about the role played by ACCHSs in developing and implementing Indigenous eye health policies respondents considered that: Respondents noted that ACCHSs also wanted to move away from body parts programs to the primary health care approach. They were against the ‘y in y out model’ and wanted adequate services, especially ophthalmologists’ services. Some respondents commented on the increasing inuence of politicians to import their own ideas on the policy process which generally involved input from committees and NACCHO.

By 1998 OATSIH was implementing the service delivery facet of the regional eye health model recommended in the 1997 National Review of Indigenous Eye Health. Issues of role clari cation and systems infrastructure, tendering for eye equipment, a nancing system for ophthalmologists visiting in remote areas, and Medicare funding for Aboriginal people were being worked through. The speci c problems public servant respondents encountered in implementing the Indigenous eye health policy were

65 Medicare’s reluctance in making a special allowance for Indigenous people, and RACO’s delay in developing a nancing system for ophthalmologists who would visit remote areas, critical in delivering eye health services ‘on the ground’. In addition, it was found necessary to stop the $4 million tendering process for eye equipment, a reection of the many internal problems within OATSIH.

In commenting about the years after 2000 respondents noted that there was a transfer from vertical to horizontal programs in 2004, as well as a ch ange from the body parts approach. Health was the rst agency which tried to integrate Indigenous health into broader programs in 2004. Respondents were involved with the Alan Banscott Review of Central Australia Eye Health in 2005, the Guidelines for Primary Health Review (documents were trachoma centred) in 2006, and the Indigenous Eye Health Survey in 2008. One respondent noted that OATSIH’s new broad based funding approach has meant that transparency has been somewhat lost in eye health as well as other areas. In thinking about Indigenous eye health policy making another respondent noted that: Policy development for sustained change needs an integrated approach. Policy is decision making within structure (Respondent 20). In recent times speci c policies have included the integrated eye health service delivery model for Central Australia and the Barkly - including putting in place the senior co-ordination position in the Alice Springs Eye Health Unit, dealing with the backlog of eye surgery (i.e. improved delivery and access), improvements to VOS and MSOAP, and agreements between the CDHA, States and Territories to tackle trachoma and eye care in Indigenous communities. Respondents noted the signi cance nationally as well as internationally of the Surgery, Antibiotic, Face, Environment (SAFE) Strategy Guidelines. The Guidelines have gained a primary role in working with three jurisdictions (WA, NT and SA) as well as mapping exercises in QLD and NSW.

Much of the focus has changed from the National Strategic Framework to the work of COAG and Closing the Gap. Closing the Gap in Indigenous Health has also introduced new initiatives such as a ‘ big emphasis on big diseases’ and improvements linked to a productivity agenda. Targets have been agreed to by all jurisdictions. One respondent added that the end result is to try to get good policy agreed to, and to direct health professionals into Indigenous health.

On the importance of Indigenous eye health, respondents oered the following views associated with their experience in Indigenous eye health: • Indigeno us eye health gains in importance when referring to eye health data.

• Areas such as eye health have lower priority and struggle in the overall Indigenous health agenda because of so many other competing issues.

• It is dicult to estimate whether more resources given to eye health would impact on broader issues.

• Medics come and go. It is important to encourage Indigenous people to study in the eld of ophthalmology

• Policies were not seriously trying to implant cost eective interventions (e.g. cataract, surgery). Indigenous eye health workers employed with Northern Territory Health were not sure of what they were doing or the source of funds.

• Policies emphasised Indigenous involvement. There was a huge gap after Fred Hollows died.

66 Medicare’s reluctance in making a special allowance for Indigenous people, and RACO’s delay in Extent of Indigenous people’s involvement in policy development and implementation developing a nancing system for ophthalmologists who would visit remote areas, critical in delivering eye health services ‘on the ground’. In addition, it was found necessary to stop the $4 million tendering process Respondents considered that Indigenous people are involved in eye heath policy consultations and for eye equipment, a reection of the many internal problems within OATSIH. negotiations and feedback is given to communities from the bureaucracy in the policy making process. Thinking further about this process they added that: In commenting about the years after 2000 responde nts noted that there was a transfer from vertical to horizontal programs in 2004, as well as a change from the body parts approach. Health was the rst agency • There are more Indigenous people in organisations such as AIDA and consequently the system is which tried to integrate Indigenous health into broader programs in 2004. Respondents were involved with now more robust than before. Indigenous control is not going away; it is here to stay. the Alan Banscott Review of Central Australia Eye Health in 2005, the Guidelines for Primary Health Review (documents were trachoma centred) in 2006, and the Indige nous Eye Health Survey in 2008. One • Indigenous public servants in Commonwealth Departments are involved in the policy making respondent noted that OATSIH’s new broad based funding approach has meant that transparency has process. been somewhat lost in eye health as well as other areas. In thinking about Indigenous eye health policy making another respondent noted that: • Broad consultation takes place on National Partnership Agreements. The major focus is on outcomes and less direct management from the Commonwealth.

• The National Aboriginal Community Controlled Health Organisation, Aboriginal Medical Services, In recent times speci c policies have included the integrated eye health service delivery model for Central Australian Indigenous Doctors Association are all involved in consultation. Australia and the Barkly - including putting in place the senior co-ordination position in the Alice Springs Eye Health Unit, dealing with the backlog of eye surgery (i.e. improved delivery and access), improvements • The Department has responded to feedback, such as the body parts criticism which was to VOS and MSOAP, and agreements between the CDHA, States and Territories to tackle trachoma widespread. Feedback has been received about the need for better co-ordination of chronic diseases. and eye care in Indigenous communities. Respondents noted the signi cance nationally as well as internationally of the Surgery, Antibiotic, Face, Environment (SAFE) Strategy G uidelines. The Guidelines have • Many Departmental sta have visited communities. gained a primary role in working with three jurisdictions (WA, NT and SA) as well as mapping exercises in Relationship between Federal, State and Territory Indigenous policy makers QLD and NSW. Referring to earlier times one respondent stated that there were some issues concerning the Much of the focus has changed from the National Strategic Framework to the work of COAG and Closing State/Territory Government relationship in the Tri-State sexual health project. Co-ordination was good the Gap. Closing the Gap in Indigenous Health has also introduced new initiatives such as a ‘big emphasis but the project needed a partnership approach. on big diseases’ and improvements linked to a productivity agenda. Targets have been agreed to by all jurisdictions. One respondent added that the end result is to try to get good policy agreed to, and to direct While some respondents commented that they have had no direct involvement with other health professionals into Indigenous health. governmental Indigenous policy makers and had not been involved in consultations in recent times about the Trachoma Program, others thought that there were not enough educated Indigenous people ‘to ght On the importance of Indigenous eye health, respondents oered the following views associated with it out’ with the Federal and Northern Territory government health people on policy detail. They considered their experience in Indigenous eye health: that education is critical for advancement and this is the reason why health issues are not resolved.

Barriers and enablers - policy development and implementation Enablers – Respondents’ views about enablers included: • Fred Hollows’ resultant inuence. • Individuals who lobbied and had an impact; regional eye health co-ordinators; the AMA and RANZCO. • A Minister of the day who was supportive of the Central Australia work. • Achievements of sta despite all the barriers.

Barriers – Respondents’ views about the barriers included: • The time when ear health had higher priority than eye disease and eye health was not the key driver of policy making. • No recognition that intergovernmental relationships are strengthened through partnerships. • Barriers caused by NACCHO’s disinterest in eye health. • The NT Government which did not put enough resources into the Centre for Eye Health in Central Australia. • Eye health is not heavily featured in Closing the Gap: NT. 67 7.3.3 Evidence and resources

Some respondents considered that in the 1990s evidence was required on the burden of disease, and whether the need was the greatest in rural, urban or remote locations. There was a bias towards remote locations in discussions. However chronic diseases were widespread in all locations and limited funding resources could not meet all needs.

Other respondent observations about the importance of evidence and resources were that: • The Surgery, Antibiotic, Face, Environment (SAFE) strategy for trachoma has some evidence base. • Evidence is needed to substantiate the impression that main streaming should not be enforced by the Department. • Evidence is critical. Real data on trachoma rates was obtained in 2008/9. • Eye health is more political than other are as. However, there is a need to ght for eye health and adequate resources. Administrators’ inability to co-ordinate and communicate is a problem. • The NTEHP put eye health on the map and continues to receive attention about the inequalities. • A robust health system and value add programs are required to bene t Indigenous eye health programs. • Consultancy resources have been generous. • There have been insucient resources to develop policy. The COAG framework may demand stronger evaluative framework. 7.3.4 Implementation issues

The respondents noted that the recommendations in the 1997 National Review of Indigenous Eye Health were implemented in a piecemeal fashion and it took a long time to implement Azithromycin. One respondent had been involved in implementing policies related to the Indigenous Eye Health Centre in Alice Springs and another in primary health care policies (including eye health).

7.3.5 Role played by community controlled health services in the development and implementation of Indigenous eye health policies

The following respondents’ perspectives about the role played by Community Controlled Health Services relate to their experiences from the 1990s to the present time.

• Active participation of ACCHSs in the Northern Territory and Central Australia is critical. The regional eye health co-ordination has had a mixed role. The AMS control is good but implementation needs strengthe ning.

• Real improvements were made when the primary health care approach was developed. The professionals working in the ACCHSs were very inuential and some tensions developed. NACCHO wanted community members to be involved in the process of implementation as well as the non-Indigenous medical sta.

68 • By 1999 most eye health co-ordinators were operating out of ACCHSs. Resources were limited, responsibilities were broad and there was a wide area to cover. The program depended on ophthalmologists.

• Diculties were encountered due to the lack of co-ordination between ACCHSs and State and Federal Governments in delivering programs.

• In 2006 there was active participation of ACCHSs in the Northern Territory and Central Australia. ACCHSs have a mixed role in regional eye health co-ordination. Implementation needs strengthening. The Government’s goal is that not all services be delivered through ACCHSs as there is a need for State and Territory Government services as well.

7.3.6 Concluding comments

The respondents also oered the following concluding comments: • Ian Anderson was a conduit for much broader views of health, and primary health care inc luding international views. • Eye health provides a good example for understanding the health system. • Indigenous eye health policymaking needs to be rigorous. Need evidence, reality about what is possible, accountability, and high quality work. • Need to acknowledge the transformative power of education for Indigenous people. Teachers in bush schools do not have the training required in a cross cultural environment. Cross cultural education has to go in both directions. 7.3.4 Implementation issues • There is still debate around the vertical versus horizontal model of delivery in the reform agenda.

The respondents noted that the recommendations in the 1997 National Review of Indigenous Eye Health • Specialists will need to decide how to work with Indigenous people. The y in y out model is not were implemented in a piecemeal fashion and it took a long time to implement Azithromycin. sustainable. Need sustainable system and education. There is little cultural training in remote areas. One respondent had been involved in implementing policies related to the Indigenous Eye Health Centre in • Requires nancing changes in the Australian health system and support for people such as the Alice Alice Springs and another in primary health care policies (including eye health). Springs Hospital Eye Department.

7.3.5 Role played by community controlled health services in the development and • The bureaucracy needs a broader perspective on health. Poor stang in the bureaucracy means implementation of Indigenous eye health policies that communities suer. • The campaign that led to the Close the Gap approach was predicated on a human rights The following respondents’ perspectives about the role played by Community Controlled Health Services approach. relate to their experiences from the 1990s to the present time. • There needs to be a shift in power between government and Indigenous people. • Indigenous health professionals are building capacity across the health workforce. An Indigenous Health Workforce Association is required as well as governance capacity building across the board. • The potential exists for an international agenda on sovereignty and human rights and relationship with WHO and other international agencies. • Cultural change is needed within the bureaucracy in current times.

69 7.4. 1990 - 2010 Fred Hollows Foundation, Royal Australian and New Zealand College of Ophthalmologists, Alice Springs Hospital Eye Department perspectives of Indigenous eye health policies

7.4.1 Respondents’ role in policy development

Five non-Indigenous respondents (1 female and 4 male) representing the FHF, RANZCO and the Alice Springs Hospital Eye Department described their various roles in Indigenous eye health policy making.

The FHF was launched in 1992 prior to Fred Hollows’ death in 1993. A FHF oce w as set up in Cairns and included Indigenous eye health. Referring to the 1990s respondents reported that the FHF recognised that eye health needed to be considered in the wider health context as Indigenous eye health is part of a much bigger picture. The FHF adopted the approach that it was not its role to carry out Indigenous health across the board but to help solve issues regarding eye doctors’ operations in local communities.

The FHF is currently participating in the Central Australia Integrated Eye Health Strategy. The Strategy is outcome focused and most of the Strategy’s actions are operational. One of its aims is to ensure Central Australia and Barkly eye health stakeholders remain active and inuential on the wider eye health agenda. The Strategy Steering Committee conducts data gathering and analysis, identi es problems and solutions, and uses this evidence base to advocate for policy reform. The Strategy is funded by Federal and Northern Territory Governments and receives contributions from FHF and the Royal Australian and New Zealand College of Ophthalmologists Eye Foundation.

Eye health and general Indigenous development are the FHF two core areas of activity in Australia, and follow Fred Hollows’ pioneering work of community-based action in Indigenous eye health. In addition, Professor Hugh Taylor’s work in the 1990s exposed the degree and scale of eye health problems in remote Indigenous communities and was a major catalyst for FHF’s involvement in eye health care in Central Australia.

In 2009 the National Indigenous Eye Health Survey demonstrated that eye health for Indigenous Australians is still far worse than for the rest of the population and in fact getting worse in some areas. For example, the incidence of type 2 diabetes amongst Indigenous people has risen 80 fold since the early 1970s, with resultant increases in diabetic eye disease.

The need for action was further highlighted in late 2005 when the Foundation commissioned the Banscott Health Consulting Report Feasibility Assessment to develop a su stainable eye service in Central Australia. The Report identi ed a fragmented eye health service system in Central Australia that did not suciently address the needs of the local Indigenous population. The FHF believes that a base for sustainable improvement exists, including the presence of an ophthalmologist in Alice Springs with a demonstrated long term commitment to Indigenous eye health.

There is some divergence of approaches amongst the Strategy partners (NT and Federal governments, Central Australian Aboriginal Congress Inc., Anyinginyi Health Aboriginal Corporation and the FHF). The FHF advocates a development approach to improving Indigenous health which is consistent with the thinking of the two ACCHSs associated with the Strategy. The NT Government is represented on the Steering Committees by the Alice Springs Hospital. Respondents commented that the NT Government approach to Indigenous hea lth is focused on clinical outcomes with particular emphasis on surgical statistics, to the detriment of cultural procedures. Inappropriate methods of delivery occur through lack of cultural education.

70 7.4. 1990 - 2010 Fred Hollows Foundation, Royal Australian and New Zealand College of 7.4.2 Policy processes in Indigenous eye health Ophthalmologists, Alice Springs Hospital Eye Department perspectives of Indigenous eye health policies One respondent noted that there has been no overarching policy for Indigenous Eye Health in the FHF. Indigenous eye health is addressed through the mainstream health system and the Indigenous speci c 7.4.1 Respondents’ role in policy development primary health care system. This situation has lead to service gaps and poor outcomes for remote residents of the NT which has resulted in governments approaching the FHF to support tlhe deve opment of an Five non-Indigenous respondents (1 female and 4 male) representing the FHF, RANZCO and the Alice integrated approach in Central Australia. Springs Hospital Eye Department described their various roles in Indigenous eye health policy making. In the mainstream eye health eld Vision 2020 Australia has provided a strong advocacy voice for The FHF was launched in 1992 prior to Fred Hollows’ death in 1993. A FHF oce was set up in Cairns and Indigenous health. Their Aboriginal and Torres Strait Islander Committee provides input which has been included Indigenous eye health. Referring to the 1990s respondents reported that the FHF recognised integral to the Strategy project in Central Australia. The Alice Springs Hospital Eye Department co-ordination that eye health needed to be considered in the wider health context as Indigenous eye health is part of a role is critical and dicult because of the need for a pragmatic application of policies. One respondent much bigger picture. The FHF adopted the approach that it was not its role to carry out Indigenous health further commented that patients deserve the highest quality of care and current policies do not allow this across the board but to help solve issues regarding eye doctors’ operations in local communities. to happen due to the lack of structural support.

The FHF is currently participating in the Central Australia Integrated Eye Health Strategy. The Strategy Extent of Indigenous people’s involvement in policy development and implementation is outcome focused and most of the Strategy’s actions are operational. One of its aims is to ensure Central Australia and Barkly eye health stakeholders remain active and inuential on the wider eye health agenda. Respondents considered that community feedback had been taken into consideration in the 1990s The Strategy Steering Committee cond ucts data gathering and analysis, identi es problems and solutions, providing an example of assisting an ACCHS to develop its own data bases which were utilised in place of and uses this evidence base to advocate for policy reform. The Strategy is funded by Federal and Northern the OATSIH system. Territory Governments and receives contributions from FHF and the Royal Australian and New Zealand College of Ophthalmologists Eye Foundation. Regarding current Indigenous involvement in the development of policies, the Vision 2020 Aust ralia Committee chaired by the CEO of NACCHO provides input. In addition the input of Indigenous people Eye health and general Indigenous development are the FHF two core areas of activity in Australia, and through the two ACCHSs has been integral to the Strategy project in Central Australia. follow Fred Hollows’ pioneering work of community-based action in Indigenous eye health. In addition, Professor Hugh Taylor’s work in the 1990s exposed the degree and scale of eye health problems in remote Respondents noted the importance of adequate consultation, discussion with and feedback to the Indigenous communities and was a major catalyst for FHF’s involvement in eye health care in Central Indigenous community. They added that the requirement for extended community consultation periods Australia. is an issue for governments. The Alice Springs Hospital Eye Department involves Indigenous people in the service and the local committees are involved in the development of policy proposals. The Department has In 2009 the National Indigenous Eye Health Survey demonstrated that eye health for Indigenous a dynamic relationship with communities and considers the provision of continuing services in Australians is still far worse than for the rest of the population and in fact getting worse in some areas. For Indigenous communities are critical. example, the incidence of type 2 diabetes amongst Indigenous people has risen 80 fold since the early 1970s, with resultant increases in diabetic eye disease. Relationship between Federal, State and Territory Indigenous policy makers

The need for action was further highlighted in late 2005 when the Foundation commissioned the Banscott Respondents observed that while there is a shared commitment to the delivery of health services between Health Consulting Report Feasibility Assessment to develop a sustainable eye service in Central Australia. governments and policy makers, there is sometimes not a shared understanding of how best to achieve The Report identi ed a fragmented eye health service system in Central Australia that did not suciently this and there may be dierences of priority. They spoke about the poor relationship between government address the needs of the local Indigenous population. The FHF believes that a base for sustainable policy makers due to responsible bureaucrats lacking knowledge and experience in eye health. improvement exists, including the presence of an ophthalmologist in Alice Springs with a demonstrated long term commitment to Indigenous eye health. Barriers and enablers - policy development and implementation

There is some divergence of approaches amongst the Strategy partners (NT and Federal Thinking about the 1990s one respondent commented that ACCHSs had short annual budget cycles which governments, Central Australian Aboriginal Congress Inc., Anyinginyi Health Aboriginal Corporation and the caused a serious problem and considered it might have been better to align Indigenous health with FHF). The FHF advocates a development approach to improving Indigenous health which is consistent with migrant and poor people’s health funding. the thinking of the two ACCHSs associated with the Strategy. The NT Government is represented on the Steering Committees by the Alice Springs Hospital. Respondents commented that the NT Government The FHF observed that the Federal Government has currently committed strongly to international eye approach to Indigenou s health is focused on clinical outcomes with particular emphasis on surgical health through programs like the Avoidable Blindness Initiative and has engaged positively with the eye statistics, to the detriment of cultural procedures. Inappropriate methods of delivery occur through lack of health sector through Vision 2020 Australia. However, speci c attention to Indigenous eye health and cultural education. achieving an appropriate priority has proved more challenging. The size of the health system is a signi cant barrier and there are diculties in developing policy for the hospital sector or a small population group. Consequently despite evidence of high levels of avoidable blindness, as a result of low access to 71 7.4.2 Policy processes in Indigenous eye health cataract surgery there has not been any major initiative across the whole system to address these issues.

One respondent noted that there has been no overarching policy for Indigenous Eye Health in the FHF. While the FHF considered that enablers are the highly committed politicians and bureaucrats who develop Indigenous eye health is addressed through the mainstream health system and the Indigenous speci c policies and allocate funding, RANZCO considered that enablers are visits to communities, the people with primary health care system. This situation has lead to service gaps and poor outcomes for remote residents understanding and prior knowledge of provision of Indigenous health, the grass roots people who drive of the NT which has resulted in governments approaching the FHF to support tlhe deve opment of an funding, the Minister who is interested in Indigenous health because it is a vote catcher as well, and integrated approach in Central Australia. individuals who advocate for the cause. The barriers are found in the rigid funding guidelines and the misunderstandings which occur in communication with government bureaucrats. In the mainstream eye health eld Vision 2020 Australia has provided a strong advocacy voice for Indigenous health. Their Aboriginal and Torres Strait Islander Committee provides input which has been From the Alice Springs Hospital Eye Department perspective there is frustration associated with the policy integral to the Strategy project in Central Australia. The Alice Springs Hospital Eye Department co-ordination process and policies already developed are not implemented. The observation was made that patients’ role is critical and dicult because of the need for a pragmatic application of policies. One respondent views are inconvenient in the policy making process and therefore their opinions are not taken into further commented that patients deserve the highest quality of care and current policies do not allow this consideration. to happen due to the lack of structural support. 7.4.3 Evidence and resources Extent of Indigenous people’s involvement in policy development and implementation Respondents considered that the 1997 National Review of Indigenous Eye Health provided evidence Respondents considered that community feedback had been taken into consideration in the 1990s which was previously lacking. Available resources in the 1990s included the Cape York Indigenous Eye providing an example of assisting an ACCHS to develop its own data bases which were utilised in place of Health Model which respondents considered could be applied nationally. Other resources nominated by the OATSIH system. respondents included public and private facilities for clinical services, consultations with the Federal Government, and assistance from State Governments. Regarding current Indigenous involvement in the development of policies, the Vision 2020 Australia Committee chaired by the CEO of NACCHO provides input. In addition the input of Indigenous people The FHF observed that governments have responded to the evidence of high rates of trachoma in some through the two ACCHSs has been integral to the Strategy project in Central Australia. locations by instituting trachoma policies and programs. While this is positive it does not address the eye health problems that are contributing to the main burden of blindness among Indigenous Respondents noted the importance of adequate consultation, discussion with and feedback to the Australians. A national survey of Indigenous eye health issues released recently does not seem to have had a Indigenous community. They added that the requirement for extended community consultation periods signi cant impact on eye health policy to date. The Alice Springs Hospital Eye Department recognises the is an issue for governments. The Alice Springs Hospital Eye Department involves Indigenous people in the need for evidence-based policies and collects data on surgery and clinics. service and the local committees are involved in the development of policy proposals. The Department has a dynamic relationship with communities and considers the provision of continuing services in Regarding resources, the FHF has received funding from government to support a position to carry out the Indigenous communities are critical. work of the Strategy as well as resource s to fund the eye surgery work, community engagement and patient support at the Alice Springs Hospital. The FHF and RANZCO have contributed resources to Relationship between Federal, State and Territory Indigenous policy makers ensure the success of the Strategy and allow the complete range of activity to be implemented. The FHF supports the Alice Springs Hospital Eye Department in an environment of insucient resources due Respondents observed that while there is a shared commitment to the delivery of health services between to competing interests. governments and policy makers, there is sometimes not a shared understanding of how best to achieve this and there may be dierences of priority. They spoke about the poor relationship between government 7.4.4 Implementation issues policy makers due to responsible bureaucrats lacking knowledge and experience in eye health. The policies recommended in the 1997 National Review of Indigenous Eye Health took a long time to Barriers and enablers - policy development and implementation implement and were not implemented totally. The Government was reluctant to set up the information network, the central point for information to inuence policy making and policies. Respondents Thinking about the 1990s one respondent commented that ACCHSs had short annual budget cycles which considered that this is still needed in Indigenous health and added that it has been the FHF’s biggest caused a serious problem and considered it might have been better to align Indigenous health with failure not to achieve this. One respondent who became involved in the implementation of the 1997 migrant and poor people’s health funding. Review for a time through OATSIH recalled the diculties they encountered in obtaining commitment from the States and Territories, and the project ocers’ lack of expertise in this eld of work. When the 1997 The FHF observed that the Federal Government has currently committed strongly to international eye Review did not get much traction the suggestion was raised whether the FHF should re-focus on eye health health through programs like the Avoidable Blindness Initiative and has engaged positively with the eye rather than community development. health sector through Vision 2020 Australia. However, speci c attention to Indigenous eye health and achieving an appropriate priority has proved more challenging. The size of the health system is a signi cant barrier and there are diculties in developing policy for the hospital sector or a small population group. Consequently despite evidence of high levels of avoidable blindness, as a result of low access to 72 Around the late 1990s the FHF considered that with the 1997 National Review of Indigenous Eye Health it was time for the government to take responsibility for Indigenous eye health. The FHF did however assist the Sunrise Health Service in its health delivery in the Katherine region, including putting good food into the stores, and cooking programs. The FHF co-ordinated ‘eye surgery blitzes’ in Alice Springs over 5 years, and provided low cost glasses in the Top End for 3 years. At this time the FHF also decided that any action needed to come from the ground up, from community people and empowerment of Indigenous people would be critical to moving forward. Respondents noted however, that the FHF kept in touch with the politicians, wrote submissions and attended meetings.

The FHF Strategy is in the process of implementation. This is an on-going project over some years. Ophthalmologists visit and work with communities. The next stages will involve the FHF giving control of the project to the health services and government agencies responsible for eye health in the region. The FHF is hopeful that the outcomes will inuence broader policy in other regions.

7.4.5 Role played by community controlled health services in the development and implementation of Indigenous eye health policies

Respondents considered that the community controlled health services play an important role in policy development. The input of the Indigenous people on the Strategy in Central Australia through the two community controlled health services, has been integral to the project. As equal partners with the Federal and Northern Territory governments in the development and implementatio n of the Strategy the two ACCHSs have been pivotal in ensuring that the needs, rights and wishes of Indigenous people have been the major driver of policy development.

7.4.6 Concluding comments

From a RANZCO viewpoint future policy making requires input from individuals with a background of working in rural areas, an interest in Indigenous eye health, and having cultural awareness. Future lobbying/advocacy requires key high pro le, passionate people who can communicate, and policy implementation requires a correct mix of appropriate people, and interested persons in all levels of government, with leadership and mentoring qualities.

From the Alice Springs Hospital Eye Department perspective, it is important that the Department receives help with what needs to be done in providing support and resources, instead of advice about what should be done. The work is on-going and there must be improvements in ecient, cost-eective care. The North Queensland Model of Care should be given consideration.

8.0 DISCUSSION

The respondent perspectives of Indigenous Eye health policies were presented in three groups:

1. Respondents associated with the 1976-1979 NTEHP and afterwards. 2. Commonwealth Public Servants and consultants - 1990-2010. 3. Respondents associated with FHF, RANZCO and Alice Springs Hos pital Eye Department – 1990-2010.

8.1 Respondents’ role and policy processes in Indigenous eye health

The respondents’ role in Indigenous eye health policy processes vary from hands on to policy development and delivery. Consequently each group contained members having dierent characteristics. They can be described as follows. The NTEHP group exhibited passion for their work and

73 Around the late 1990s the FHF considered that with the 1997 National Review of Indigenous Eye Health were guided by the strong charismatic leadership of Fred Hollows. The NTEHP attracted Indigenous it was time for the government to take responsibility for Indigenous eye health. The FHF did however assist and non-Indigenous people who became more convinced of the importance of Indigenous eye health the Sunrise Health Service in its health delivery in the Katherine region, including putting good food into the more they gained rst-hand knowledge of trachoma. They experienced personal connections with the the stores, and cooking programs. The FHF co-ordinated ‘eye surgery blitzes’ in Alice Springs over 5 years, communities they assisted while travelling and working on the Program. And they came to the realisation and provided low cost glasses in the Top End for 3 years. At this time the FHF also decided that any action that the NTEHP could make a dieren ce and be used as a guide for change in considering other problems. needed to come from the ground up, from community people and empowerment of Indigenous people This is evidenced in the on-going work of certain members today in research and journalistic endeavours. would be critical to moving forward. Respondents noted however, that the FHF kept in touch with the politicians, wrote submissions and attended meetings. A contemporary example of similar dedication in providing Indigenous eye health care is found in the third group in the connection that the Alice Springs Hospital Eye Department has with Indigenous The FHF Strategy is in the process of implementation. This is an on-going project over some years. communities in delivering eye health care in Central Australia. As part of Central Australia Integrated Ophthalmologists visit and work with communities. The next stages will involve the FHF giving control Eye Health Program the Alice Springs Hospital Eye Department has been funded to carry out intensive of the project to the health services and government agencies responsible for eye health in the region. The eye surgery from 2010 to 2013. FHF is hopeful that the outcomes will inuence broader policy in other regions. Other contemporary compassionate change leaders are the medical professionals and academics that 7.4.5 Role played by community controlled health services in the development and have delivered and continue to deliver, through their consultancies with the Commonwealth Government implementation of Indigenous eye health p olicies and through their evidence-based Indigenous eye health research. Their expertise contributes to policymaking and programs. However, the extent that their recommendations are taken up has depended Respondents considered that the community controlled health services play an important role in policy on Government funding, the attitude of the Minister of the day, and the content of departmental development. The input of the Indigenous people on the Strategy in Central Australia through the Ministerial brie ng notes. Recognition of the importance of consultation and negotiation with and two community controlled health services, has been integral to the project. As equal partners with the feedback to Indigenous communities has increased in recent times. However, the methods used to Federal and Northern Territory governments in the development and implementation of the introduce the Northern Territory Emergency Response in 2007 raise doubts that this philosophy is Strategy the two ACCHSs have been p ivotal in ensuring that the needs, rights and wishes of Indigenous understood and followed by government policy makers and implementers. people have been the major driver of policy development. The lack of Indigenous people employed in high level positions in the Commonwealth Public Service 7.4.6 Concluding comments and the transitory nature of Public Servants have contributed to the poor eye health and cultural knowledge which can impede policy making and program delivery. Sucient emphasis has not been given From a RANZCO viewpoint future policy making requires input from individuals with a background of to training Public Servants in carrying out their duties in this culturally speci c area. working in rural areas, an interest in Indigenous eye health, and having cultural awareness. Future lobbying/advocacy requires key high pro le, passionate people who can communicate, and policy 8.2 Barriers and facilitators to e ective policy and program development implementation requires a correct mix of appropriate people, and interested persons in all levels of government, with leadership and mentoring qualities. The respondents’ perceptions of the barriers to eective policy and program development include a lack of evidence base in Indigenous eye health, a lack of resources, report recommendations not implemented, From the Alice Springs Hospital Eye Department perspective, it is important that the Department receives narrow attitudes of ACCHSs, the size of the health system, poor co-ordination/structural help with what needs to be done in providing support and resources, instead of advice about what support for programs, and lack of cultural education for workers in the eld and in the Public Service. should be done. The work is on-going and there must be improvemen ts in ecient, cost-eective care. Respondents also nominated the Federal/State Government responsibility divide over funding, dierent The North Queensland Model of Care should be given consideration. priorities, and lack of knowledge and experience in eye health. Respondents considered that the facilitators are the highly committed politicians, advocates, bureaucrats, ACCHSs, RANZCO, FHF, and the 8.0 DISCUSSION AMA.

The respondent perspectives of Indigenous Eye health policies were presented in three groups: Barriers and facilitators of Indigenous eye health programs can be tracked through its peaks and troughs commencing with the NTEHP’s success. Funding for the NTEHP catered for non-Indigenous as well as 1. Respondents associated with the 1976-1979 NTEHP and afterwards. Indigenous people throughout rural and remote Australia. The Program had a strong champion in Fred 2. Commonwealth Public Servants and consultants - 1990-2010. Hollows who was able to exer t inuence on the Minister of the day. 3. Respondents associated with FHF, RANZCO and Alice Springs Hospital Eye Department – 1990-2010. Policy development suered in the 1980s and 1990s in the absence of a champion for Indigenous eye 8.1 Respon dents’ role and policy processes in Indigenous eye health health, mainstream apathy, shared departmental responsibility for Indigenous health, and its location in 3 organisations from 1984 to 1995. Respondents have noted that Indigenous eye health was not a high The respondents’ role in Indigenous eye health policy processes vary from hands on to policy priority in the 1980s and 1990s following the NTEHP and money spent on Indigenous health was development and delivery. Consequently each group contained members having dierent considered wasted money. There was a reduction in eye health funding around 1990 when ATSIC wanted characteristics. They can be described as follows. The NTEHP group exhibited passion for their work and to reduce community control. The State and Federal divide meant there was competition for funding for other problem areas. 74 Respondents indicated policy implementation issues existed at OATSIH in carrying out the 1997 National Review of Indigenous Eye Health recommendations which were partially carried out, ignored or considered ongoing. They reported poor linkage between OATSIH and NACCHO (which has since improved).

A period of renewed interest in Indigenous eye health occurred after Professor Hugh Taylor drew attention to the internationally recognised SAFE Strategy. Additionally, an advocacy role for Indigenous eye health was undertaken by Vision 2020 Australia (a part of the joint global initiative of the World Health Organisation and of the International Agency for the Prevention of Blindness) when it was established in Australia in 2000. The Department of Health and Ageing is a member organisation and the chair of its Indigenous Committee has been the NACCHO CEO. Respondents commented that the SAFE Strategy has provided some evidence base for trachoma and Vision 2020 Australia has provided a strong advocacy voice for Indigenous eye health. They also noted the transfer from vertical to horizontal programs in 2004 and a change from the body parts approach in policy making.

In 2004 the Council of Australian Governments addressed Indigenous disadvantage as the framework for whole of government approach. This approach has made mainstream agencies responsible for delivery of Indigenous speci c services, re ned the Visiting Optometrist Scheme and the Medical Specialist Outreach Assistance Program for improved rural and remote access as well as Commonwealth Outreach Programs. Some respondents in the study expressed concern about the viability of the y-in y-out model of treatment. However, this is often the only viable option in small communities when specialists cannot live in a community of 1000 and patients cannot travel to a capital city for service.

In 2006 Guidelines for public health management of trachoma were published and the National Trachoma Surveillance and Report Unit was established in Melbourne. Planning for an integrated regional eye service in Central Australia also commenced.

Following the Northern Territory Emergency Response in 2007, ren amed Closing the Gap: NT, the Australian Government committed $58 million over four years in 2009 for chronic eye and ear disease for Indigenous Australians. The former Prime Minister (Rudd, 2009) and the Minister for Families, Housing Community Services and Indigenous Aairs announced at least 1,000 additional eye and ear surgical procedures and an increase of at least ten regional optometric teams to treat and prevent eye disease in NT, WA, SA and other states where trachoma is identi ed.

Within a small interview base of 11 Public Servants and consultants, respondents indicated that they had been involved in some of the associated work of these initiatives. They noted the requirement for a shift in power between government and Aboriginal people, the ongoing debate around the vertical versus horizontal model of delivery and broad based funding in the reform agenda, a nd the lack of emphasis on Indigenous eye health in Closing the Gap: NT.

75 8.3 Strategies for future systems reform

The task of raising awareness of the existence of trachoma in communities today is not clear cut. Fred Hollows galvanised the Minister of the day in a program which included mainstream and Indigenous people suering from trachoma. His enthusiasm was caught by Indigenous and non-Indigenous colleagues and community members whom he empowered.

Today’s champions in eradicating trachoma in Australia are the authors of numerous articles, evidence-based reports and reviews on trachoma. They also lobby Ministers, State and Federal bureaucrats, private foundations and Aboriginal communities to draw attention to Australian and international evidence for action in eradicating trachoma in Indigenous communities in Australia. The importance of Indigenous leadership suggests that in 2010 empowerment for placing trachoma and Indigenous eye health at the forefront of consciousness could be found within the newly formed Indigenous organisations in 2010.

Additionally, the necessity for change within the organisational culture of the policymaking and implementation organisation must be recognised as a strategy for future reform. Theorising about organisational culture in 1993 Goldhaber concluded that ‘culture is usually long term, rooted in deeply held values, and often very hard to change’ (1993:69). More (1998:30) argues that ‘successful organisations are those that initiate change, respond to change, plan change, and implement change as an on-going way of life’.

Adopting a true commitment to diversity in Indigenous policymaking environments requires strong leadership while inuencing people to follow that direction. A more sophisticated policy framework in Aboriginal health that simultaneously maintains a focus on system issues and develops targeted strategies for problems such as Indigenous eye health is paramount.

76 References

9.0 REFERENCES

AHDG (Aboriginal Health Development Group) 1989, Report to the Commonwealth, State and Territory Ministers of Aboriginal A airs and Health, CDAA, Canberra.

ATSIC (Aboriginal and Torres Strait Islander Commission) 1991, Aboriginal and Torres Strait Islander Commission Annual Report, 5 March 1990-30 June 1990, AGPS, Canberra.

ATSIC (Aboriginal and Torres Strait Islander Commission) 1992, Aboriginal and Torres Strait Islander Commission Annual Report, 1990-1991, AGPS, Canberra.

ATSIC (Aboriginal and Torres Strait Islander Commission) 1993a, Aboriginal and Torres Strait Islander Commission Annual Report, 1991-1992, AGPS, Canberra.

ATSIC (Aboriginal and Torres Strait Islander Commission) 1993b, Aboriginal and Torres Strait Islander Commission Annual Report, 1992-1993, AGPS, Canberra.

ATSIC (Aboriginal and Torres Strait Islander Commission) 1994, Aboriginal and Torres Strait Is lander Commission Annual Report, 1993-1994, AGPS, Canberra.

ATSIC (Aboriginal and Torres Strait Islander Commission) 1995, Aboriginal and Torres Strait Islander Commission Annual Report, 1994-1995, AGPS, Canberra.

ATSIC (Aboriginal and Torres Strait Islander Commission) 1997, Community Housing and Infrastructure Program Policy 1997-2000, AGPS, Canberra.

ATSIHF (Aboriginal and Torres Strait Islander Healing Foundation) 2009, Aboriginal and To rres Strait Islander Healing Foundation Ltd, ATSIHF, Canberra, viewed 4 August 2010,

Adams, K., Burgess, j. & Dharmage, S.C 2010, Trachoma Surveillance Report 2009, National Trachoma Surveillance and Reporting Unit, Centre for Molecular, Environmental, Genetic and Analytic Epidemiology, University of Melbourne, Viewed 16 December 2010, http://www.health.gov.au/internet/main/publishing.nsf/Content/0286FB6477B7AED0CA25746600066809/$ File/NTSRU%20report_FINAL.pdf

Adams, K.S., Burgess, J.A., Dharmage, S.C. & Taylor, H. 2010, ‘Trachoma Surveillance Annual Report 2009’ , Communicable Disease Intelligence, vol.34, no.4, in press, manuscript viewed 16 December 2010, http://www.health.gov.au/internet/main/publishing.nsf/Content/0286FB6477B7AED0CA25746600066809/$Fi le/2009%20CDI_30Jul10.pdf

ADCA (Aboriginal Development Commission Act) 1980, Aboriginal Development Commission Act 1980, viewed 31 May 2010,

Aldrich, R., Zwi, A.B. & Short, S. 2007, ‘Advance Australia Fair: Social democratic and conservative politicians’ discourses concerning Aboriginal and Torres Strait Islander Peoples and their health 1972-2001’, Social Science & Medicine, vol. 64, pp. 125-137.

Allen, D.M. 1994, Frank Flynn, M.S.C. A Remarkable Territorian, Chevalier Press, Sydney.

Allen & Clarke 2009, Evaluation of the Child Health Check Initiative and Expanding Health Services Delivery Initiative: Evaluation Design Report, Allen & Clarke Policy and Regulatory Specialist s, Wellington, viewed 13 August 2010, http://www.health.gov.au/internet/main/publishing.nsf/Content/7475565371BA90E5CA257681001511A4/$Fi le/edr.pdf 77 Anderson, I. 1994, ‘Powers of Health’, Arena Magazine, no. 11, pp. 32-36.

Anderson, I. 1997, ‘The National Aboriginal Health Strategy’, in Health Policy in Australia, ed H. Gardner, Oxford University Press, Melbourne.

Anderson, I. 2001, ‘Aboriginal health, policy and modelling in social epidemiology’, in The Social Origins of Health and Well-being, eds. R. Eckersley, J. Dixon & B. Douglas, Cambridge University Press, Cambridge.

Anderson, I. 2002, ‘T he truth about Indigenous health policy’, Arena Magazine, no. 1, pp. 32-37.

Anderson, I. 2004, ‘Recent developments in national Aboriginal and Torres Strait Islander health strategy’, Australia and New Zealand Health Policy, 1:3 doi:10.1186/1743-8462-1-3, viewed 27 June 2010,

Anderson, I. 2004a, ‘The Framework Agreements: Intergovernmental agreements and Aboriginal and Torres Strait Islander he alth’, in Honour Among Nations? Treaties and Agreements with Indigenous People, eds. M. Langton, M. Tehan, L. Palmer & K. Shain, Melbourne University Press, Melbourne.

Anderson, I. 2006, ‘Mutual obligation, shared responsibility agreements & indigenous health strategy’, Australia and New Zealand Health Policy, 3:10 doi:10.1186/1743-8462-3-10, viewed 23 May 2010,

Anderson, I. 2007, ‘P olicy processes’, in Social determinants of Indigenous health, eds B. Carson, T. Dunbar & R. Bailie, Allen & Unwin, Sydney.

Anderson, I. & Brady, M. 1995, Performance indicators for Aboriginal Health Services, CAEPR Discussion Paper no. 81, viewed 27 May 2010,

Anderson, I. & Sanders, W. 1996, Aboriginal health and institutional reform within Australian federalism, CA EPR Discussion Paper no. 117, viewed 31 May 2010,

Atkinson, D., Murray, R. & Couzos, S. 2008, ‘Diabetes’, in Aboriginal Primary Health Care: An Evidence-based Approach, 3rd edn, eds S. Couzos & R. Murray, Oxford University Press, Melbourne.

Audera, C., Peart, A., Szoeke, C., Duddles, J., & Vivian, N. 2000, Swimming pools in remote Indigenous communities: Some basic information for planning a pool, National Centre for Epidemiology and Population Health, The Australian National University, Canberra, viewed 16 June 2010,

AHR (Australia, House of Representatives) 1985, National Aboriginal Conference, Report and Ministerial Statement, viewed 7 June 2010,

Australian and New Zealand Horizon Scanning Network. 2005, National Horizon Scanning Unit Horizon Scanning Report: The detection of diabetic retinopathy utilising retinal photography in rural and remote areas in Australia, October 2004, Commonwealth of Australia.

ABS (Australian Bureau of Statistics) 1999, National Health Survey: Aboriginal and Torres Strait Islander Results, Australia 1995, ABS, Canberra, viewed 5 July 2010,

ABS (Australian Bureau of Statistics) 2006, National Aboriginal and Torres Strait Islander Health Survey 2004-05, ABS, Canberra, viewed 5 July 2010,

ABS (Australian Bureau of Statistics) 2010, The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander Peoples Series, ABS&AIHW, Canberra, viewed 24 June 2010,

AG (Australian Government) 2009, Closing the Gap on Indigenous Disadvantage: The Challenge for Australia, FaHCSIA, Canberra, viewed 9 August 2010,

AG (Australian Government) 2010, Budget 2010-11, Stronger Rural and Regional Communities, Compendium of Priorities and Initiatives: Health and Ageing, MSOAP Cataracts Funding – Ophthalmology Eye Teams for Rural Australia, viewed 1 August 2010,

AG (Australian Government) 2010a, Closing the Gap: Prime Minister’s Report 2010, FaHCSIA, Canberra, viewed 9 August 2010,

AGAGD (Australian Government Attorney-General’s Department) 2010, Health Insurance Commission Act 1973 No. 41, 1974, AGAGD Canberra, viewed 23 July 2010,

AGAGD (Australian Government Attorney-General’s Department) 2010a, Health Insurance Act 1973,GA A GD, Canberra, viewed 23 July 2010,

AGPS (Australian Government Publishing Service) 1994, Style Manual for Authors, Editors and Printers, 5th edn, AGPS, Canberra.

AHMAC (Australian Health Ministers’ Advisory Council) 2006, Aboriginal and Torres Strait Islander Health Performance Framework 2006 Report, AHMAC, Canberra, viewed 9 August 2010,

AHMAC (Australian Health Ministers’ Advisory Council) 2008, Aboriginal and Torres Strait Islander Health Performance Framework 2008 Report, AHMAC, Canberra, viewed 9 August 2010,

AHMC (Australian Health Ministers’ Conference) 2005a, Eye Health in Australia: A background paper to the National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss. Endorsed by the Australian Health Ministers’ Conference, AGDHA, Canberra, viewed 26 May 2010,

AHRC (Australian Human Rights Commission) 2008, Close the Gap: Indigenous Health Equality Summit, Statement of Intent, March 20 2008, AHRC, Sydney, viewed 4 August 2010,

AHRC (Australian Human Rights Commission) 2010, National Congress of Australia’s First Peoples, AHRC, Sydney, viewed 4 August 2010,

AHRC (Australian Human Rights Commission) 2010a, Close the Gap: Campaign for Aboriginal and Torres Strait Islander Health equality by 2030, AHRC, Sydney, viewed 4 August 2010, < http://www.hreoc.gov.au/social_justice/health/ctg_community.html

AHRC (Australian Human Rights Commission) 2010b, Close the Gap: Campaign for Aboriginal and Torres Strait Islander Health equality by 2030, A Community Guide, AHRC, Sydney, viewed 4 August 2010,

AHRC (Australian Human Rights Commission) 2010c, History of the Commission, AHRC, Sydney, viewed 6 August 2010,

AHRC (Australian Human Rights Commission) 2010d, About Aboriginal and Torres Strait Islander Social Justice, AHRC, Sydney, viewed 8 October 2010,

AIDA & CHETRE (Australian Indigenous Doctors’ Association & Centre for Health Equity Training, Research and Evaluation) 2010, Health Impact Assessment of the Northern Territory Emergency Response, AIDA, Can- berra, viewed 14 August 2010,

AIHInfoNet (Australian Indigenous HealthInfoNet) 2004, Review of eye health of Indigenous peoples, viewed 26 May 2010,

AIHInfoNet (Australian Indigenous HealthInfoNet) 2008, Major developments in national Indigenous policy since 1967, viewed 25 May 2010,

AIHInfoNet (Australian Indigenous HealthInfoNet) 2010, Australian Indigenous Bibliography, Collections, Eye Health, viewed 24 May 2010,

AIH (Australian Institute of Health) 1988, First biennial report of the Australian Institute of Health, AGPS, Canberra.

AIHW (Australian Institute of Health and Welfare) 2010a, Australia’s health 2010: The twelfth biennial health report of the Australian Institute of Health and Welfare, AIHW, Canberra, viewed 27 June 2010, http://www.aihw.gov.au/publications/index.cfm/title/11374

80 AIHW (Australian Institute of Health and Welfare) 2010b, Australia’s Health biennial series of reports, AIHW, Canberra, viewed 24 June 2010

AIHW & OATSIH (Australian Institute of Health and Welfare & Oce for Aboriginal and Torres Strait Islander Health) 2008, Progress of the Northern Territory Emergency Response Child Health Check Initiative: preliminary results from the Child Health Check and follow-up data collections, AIHW & OATSIH, Canberra, viewed 13 August 2010,

AIHW & OATSIH (Australian Institute of Health and Welfare & Oce for Aboriginal and Torres Strait Islander Health) 2009, Progress of the Northern Territory Emergency Response Child Health Check Initiative: Final report on results fro m the Child Health Check and follow-up data collections, AIHW & OATSIH, Canberra, viewed 13 August 2010,

ANAO (Australian National Audit Oce) 1998, The Aboriginal and Torres Strait Islander Health Program. Department of Health and Aged Care. The Auditor-General Audit Report No. 13 Performance Audit, viewed 1 June 20 10,

Bailey, R. & Lietman, T. 2001, ‘The SAFE strategy for the elimination of trachoma by 2020: will it work?, Bull World Health Organ, vol 79, pp. 233-236.

BHC (Banscott Health Consulting) 2006, Integrated Regional Eye Service in Central Australia Feasibility Assessment Report, BHC, Serpentine.

Bartlett, B. & Boa, J. 2005, ‘The impact of Aboriginal community controlled health service advocacy on Aborigi nal health policy’, Australian Journal of Primary Health, vol. 11, no. 2, pp. 53-61

Bartlett, B. & Legge, D. 1994, Supporting Health Services: A Program for the Commonwealth Department of Human Services and Health, Ideas for discussion, NCEPH Working Paper no. 34, CAAC & NCEPH, Alice Springs & Canberra.

Bellear, S. 1985, Trachoma and Eye Health Report. Report of a Review Committee comprising representatives of the National Aboriginal and Islander Health Organisat ion, the Department of Aboriginal Aairs, the Department of Health and Professor F.C. Hollows, Commonwealth Department of Aboriginal Aairs, Canberra.

Bragge, P., Chau, M., Wasiak, J. & Hewitt, A. Taylor, H.R., & Gruen, R. 2009, Diabetic Retinopathy: Accuracy of Scr eening Methods for Diabetic Retinopathy: A Systematic Review, The Global Evidence Mapping Initiative, Indigenous Eye Health Unit, Melbourne School of Population Health, The Universi ty of Melbourne, viewed 24 May 2010,

Brian, G. 1997, Medical specialist service delivery to rural and remote Australian communities: a demonstration proj ect, Fred Hollows Foundation, Sydney.

Brian, G. 1998a, Recommendations for the Implementation of Service Delivery Aspects of the ‘Eye Health in Aboriginal and Torres Strait Islander Communities’ Report (1997): South Australia, in possession of the author, Brisbane .

81 Brian, G. 1998b, Recommendations for the Implementation of Service Delivery Aspects of the ‘Eye Health in Aboriginal and Torres Strait Islander Communities’ Report (1997): Northern Territory, in possession of the author, Brisbane.

Brian, G. 1998c, Recommendations for the Implementation of Service Delivery Aspects of the ‘Eye Health in Aboriginal and Torres Strait Islander Communities’ Report (1997): Queensland, in possession of the author, Brisbane.

Brian, G. 1998d, Recommendations for the Implementation of Service Delivery Aspects of the ‘Eye Health in Aboriginal and Torres Strait Islander Communities’ Report (1997): New South Wales, in possession of the author. Brisbane

Brian, G. 1998e, Recommendations for the Implementation of Service Delivery Aspects of the ‘Eye Health in Aboriginal and Torres Strait Islander Communities’ Report (1997): Victoria, in possession of the author, Brisbane.

Brian, G. 1999, Recommendations for the Imple mentation of Service Delivery Aspects of the ‘Eye Health in Aboriginal and Torres Strait Islander Communities’ Report (1997): Tasmania, in possession of the author, Brisbane.

Brian, G. & Smith, L. 1999, ‘Indigenous Australian ill health: Time to rethink?’, in Challenging Rural Practice: Human Services in Australia, eds. L. Briskman, M. Lynn, & H. La Nauze, Deakin University Press, Geelong.

Brian, G., Dalzell, J., Nangala, S. & Hollows, F. 1990, ‘Basic ophthalmic assessment and care workshops for rural health workers’, Australian & New Zealand Journal of Ophthalmology, vol. 18, no. 1, pp. 99-102.

Briscoe, 1974, ‘The Aboriginal Medical Service in Sydney’, in Better Health for Aborigines?, eds B.S. Hetzel., M. Dobbin, L. Lippmann & E. Eggleston, University of Queensland Press, Brisbane.

Briscoe, G. 2010, Racial Folly: A Twentieth Century Aboriginal Family, Aboriginal History Monograph 20, ANU E Press , viewed 23 May 2010,

Burns, J. & Thompson, N. 2003, ‘Eye Health’, in The Health of Indigenous Australians, ed N. Thompson, Oxford University Press, Melbourne, pp. 273-289

CERA (Centre for Eye Research Australia) 2005 Taylor HR, Keee J. Investing in Sight: Strategic Interventions to Prevent Vision Loss in Australia, Eye Research Australia, 2005. (ISBN 0-9757128-8-8).

CTGSCIHE (Close t he Gap Steering Committee for Indigenous Health Equality) 2010a, Partnership Position Paper, CTGSCIHE, viewed 5 August 2010,

CTGSCIHE (Close the Gap Steering Committee for Indigenous Health Equality) 2010b, Shadow report on the Australian Government’s progress towards closing the gap in life expectancy between Indigenous and non-Indigenous Australians, CTGSCIHE, viewed 5 August 2010,

Cochrane, A. 1972, E ectiveness and eciency: random reections on health services, Nueld Provincial Hospitals Trust, London.

82 Cochrane, A. & Blythe, M. 1989, One Man’s Medicine: An autobiography of Professor Archie Cochrane, British Medical Journal (The Memoir Club), London.

Coey, C. 2008, ‘Centre for Disease Control Guidelines for management of trachoma in the Northern Territory’, NT Dis Control Bull, vol 15, no. 2, pp. 1-4.

CSDH (Commission on Social Determinants of Health) 2008, Closing the gap in a generation: Health equity through action on the social detenrmina ts of health, WHO Geneva, viewed 13 August 2010,

CDAA (Commonwealth Department of Aboriginal Aairs) 1986, Department of Aboriginal A airs Annual Report 1985-1986, AGPS, Canberra.

CDAA (Commonwealth Department of Aboriginal Aairs) 1987, Department of Aboriginal A airs Annual Report 1986-1987, AGPS, Canberra.

CDAA (Commonwealth Department of Aboriginal Aairs) 1988, Department of Aboriginal A airs Annual Report 1987-1988, AGPS, Canberra.

CDAA (Commonwealth Department of Aboriginal Aairs) 1989, Department of Aboriginal A airs Annual Report 1988-1989, AGPS, Canberra.

CDAA (Commonwealth Department of Aboriginal Aairs) 1990, Department of Aboriginal A airs Annual Report 1989-1990, AGPS, Canberra.

CDFaHCSIA (Commonwealth Department of Families, Housing, Community Services, and Indigenous Aairs) 2009, Australian Government and Northern Territory Government Response to the Report of the NTER Review Board, Canberra and Darwin, viewed 13 August 2010,

CDH (Commonwealth Department of Health) 1981, ‘National Trachoma and Eye Health Program’, Annual Report of the Director General of Health 1980-1981, AGPS, Canberra.

CDH (Commonwealth Department of Health) 1982, ‘National Trachoma and Eye Health Program’, Annual Report of the Director General of Health 1981-1982, AGPS, Canberra.

CDH (Commonwealth Department of Health) 1983, ‘National Trachoma and Eye Health Program’, Annual Report of the Director General of Health 1982-1983, AGPS, Canberra.

CDH (Commonwealth Department of Health) 1984, ‘National Trachoma and Eye Health Program’, Annual Report of the Director General of Health 1983-1984, AGPS, Canberra.

CDH (Commonwealth Department of Health) 1985, ‘National Trachoma and Eye Health Program’, Annual Report of the Director General of Health 1984-1985, AGPS, Canberra.

CDHA (Commonwealth Department of Health and Ageing) 2002, Annual Report 2001- 02, CDHA, Canberra, viewed 12 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2003, Annual Report 2002- 03, CDHA, Canberra, viewed 12 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2004a, Australian Government Response to the Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program May 2004, CDHA, Canberra, viewed 13 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2005, Annual Report 2004- 05, CDHA, Canberra, viewed 16 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2005a, National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss, CDHA, Canberra, viewed 15 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2005b, Eye health in Australia: A background paper to the National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss, CDHA, Canberra, viewed 17 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2006, Annual Report 2005- 06, CDHA, Canberra, viewed 16 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2006a, Guidelines for the public health management of trachoma in Australia, CDHA, Canberra, viewed 16 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2006b, National Eye Health Awareness Campaign Overview, CDHA, Canberra, viewed 2 August 2010,

CDHA (Commonwealth Department of Health and Ageing) 2007, Annual Report 2006- 07, CDHA, Canberra, viewed 16 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2007a, History, CDHA, Canberra, viewed 24 June 2010,

CDHA (Commonwealth Department of Health and Ageing) 2007b, Visiting Optometrists Scheme (VOS): Guidelines for Participating Optometrists 1 October 2007, CDHA, Canberra, viewed 24 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2007c, Eye Health in Australia. Section three : The delivery of eye health programs and services, CDHA, Canberra, viewed 31 July 2010,

84 CDHA (Commonwealth Department of Health and Ageing) 2007d, National Strategic Framework for Aboriginal and Torres Strait Islander Health 2003-2013: Australian Government Implementation Plan 2007-2013, CDHA, Canberra, viewed 23 May 2010,

CDHA (Commonwealth Department of Health and Ageing) 2008, Annual Report 2007- 08, CDHA, Canberra, viewed 16 July 2010, < http://www.health.gov.au/internet/annrpt/publishing.nsf/Content/index-4

CDHA (Commonwealth Department of Health and Ageing) 2008a, Communicable Diseases Network Australia (CDNA), CDHA, Canberra, viewed 16 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2008b, National Framework for Action to Promote Eye Health and Prevent Avoi dable Blindness and Vision Loss: Progress report to Australian Health Ministers’ Conference August 2008, CDHA, Canberra, viewed 17 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2008c, Eye Health Demonstration Grants, CDHA, Canberra, viewed 22 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2008d, Coordinated Care – Evaluation Report of 2nd round trials, CDHA 2008, Canberra, viewed 15 August 2010,

CDHA (Commonwealth Department of Health and Ageing) 2009, Annual Report 2008- 09, CDHA, Canberra, viewed 16 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2009a, MBS Primary Care Items: History of key MBS primary care initiative 1999-2009, CDHA, Canberra, viewed 12 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2009b, Visiting Optometrists Scheme, CDHA, Canberra, viewed 22 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2009c, Visiting Optometrists Scheme: Policy Framework, CDHA, Canberra, viewed 24 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2009d, Visiting Optometrists Scheme: Guidelines for Participa ting Optometrists October 2009, CDHA, Canberra, viewed 24 July 2010,

85 CDHA (Commonwealth Department of Health and Ageing) 2009e, Visiting Optometrists Scheme: National Priority Locations-October 2009, CDHA, Canberra, viewed 24 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2009f, Medical Specialist Outreach Assistance Program (Indigenous Chronic Disease): Policy Framework September 2009, CDHA, Canberra, viewed 31 July 2010, http://www.health.gov.au/internet/ctg/publishing.nsf/Content/MSOAP-Indigenous-Chronic-Disease-Policy- Framework

CDHA (Commonwealth Department of Health and Ageing) 2009g, Closing the Gap: Tackling Chronic Disease. The Australian Government’s Indigenous Chronic Disease Package, CDHA, Canberra, viewed 4 August 2010,

CDHA (Commonwealth Department of Health and Ageing) 2009h, A Healthier Future for all Australians: National Health and Hospitals Reform Commission – Final Report June 2009, CDHA, Canberra, viewed 4 August 2010,

CDHA (Commonwealth Department of Health and Ageing) 2010, Medical Specialist Outreach Assistance Program Guidelines, CDHA, Canberra, viewed 22 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2010a, Medical Specialist Outreach Assistance Program: Indigenous Chronic Disease Guidelines 2009-2013, CDHA, Canberra, viewed 22 July 2010,

CDHA (Commonwealth Departme nt of Health and Ageing) 2010b, MBS Online Optometry, CDHA, Canberra, viewed 25 July 2010,

CDHA (Commonwealth Department of Health and Ageing) 2010c, Eye and Ear Health Program, CDHA, Canberra, viewed 2 August 2010,

CDHA (Commonwealth Department of Health and Ageing) 2010d, Aboriginal Health Services and the Pharmaceutical Benets Scheme, CDHA, Canberra, viewed 2 August 2010,

CDHA (Commonwealth Department of Health and Ageing) 2010e, National Indigenous Health Equality Council, CDHA, Canberra, viewed 4 August 2010,

CDHA (Commonwealth Departme nt of Health and Ageing) 2010f, Annual Reports, CDHA, Canberra, viewed 10 August 2010,

CDHA (Commonwealth Department of Health and Ageing) 2010g, Closing the Gap: Northern Territory, CDHA, Canberra, viewed 13 August 2010,

86 CDHAC (Commonwealth Department of Health and Aged Care) 1999, Annual Report 1998-99, CDHAC, Canberra, viewed 15 June 2010,

CDHAC (Commonwealth Department of Health and Aged Care) 2000, Annual Report 1999-2000, CDHAC, Canberra, viewed 15 June 2010,

CDHAC (Commonwealth Department of Health and Aged Care) 2001, Annual Report 2000-01, CDHAC, Canberra, viewed 12 July 2010,

CDHAC (Commonwealth Department of Health and Aged Care) 2001a, Government Response to the House of Representatives Inquiry into Indigenous Health – ‘Health is Life’, CDHAC, Canberra, viewed 11 August 2010,

CDHAC (Commonwealth Department of Health and Aged Care) 2001b, Better Health Care: Studies in the successful delivery of Primary Health Care Services for Aboriginal and Torres Strait Islander Australians’, CDHAC, Canberra, viewed 11 August 2010,

CDHFS (Commonwealth Department of Health and Family Services) 1996, Annual Report 1995-96, AGPS, Canberra.

CDHFS (Commonwealth Department of Health and Family Services) 1997, Annual Report 1996-97, AGPS, Canberra.

CDHFS (Commonwealth Department of Health and Family Services) 1998, Annual Report 1997-98, CDHFS, Canberra, viewed 15 June 2010,

CDPMC (Commonwealth Department of Prime Minister and Cabinet) 1980, Program E ectiveness Review: Aboriginal Health, CDPMC, Canberra.

CDAA & CDTC (Commonwealth Department of Aboriginal Aairs & Commonwealth Department of Transport and Construction) 1982, Appraisal of the E ectiveness of the Aboriginal Public Health Improvement Program, CDAA & CDTC, Canberra.

CAG (Community Advisory Group) 1990, Report of the Community Advisory Group of the Implementation of the National Aboriginal Health Strategy Working Party Report, CDAA, Canberra.

Coombs, H.C. 1984, The Role of the National Aboriginal Conference. Report to the Hon. Clyde Holding, Minister for Aboriginal Aairs, AGPS, Canberra.

COAG (Council of Australian Governments) 2007, Council of Australian Governments’ Meeting, Canberra, 13 April 2007, Communique, COAG, Canberra, viewed 5 August 2010,

87 COAG (Council of Australian Governments) 2007a, Council of Australian Governments’ Meeting, Melbourne, 20 December 2007, Communique, COAG, Canberra, viewed 5 August 2010,

COAG (Council of Australian Governments) 2008, Council of Australian Governments’ Meeting, Adelaide, 26 March 2008, Communique, COAG, Canberra, viewed 5 August 2010, < http://www.coag.gov.au/coag_meeting_outcomes/2008-03-26/docs/communique20080326.pdf

COAG (Council of Australian Governments) 2008a, Council of Australian Governments’ Meeting, Sydney, 3 July 2008, Communique, COAG, Canberra, viewed 5 August 2010,

COAG (Council of Australian Governments) 2008b, Council of Australian Governments’ Meeting, Perth, 2 October 2008, Communique, COAG, Canberra, viewed 5 August 2010,

COAG (Council of Australian Governments) 2008c, Council of Australian Governments’ Meeting, Canberra, 29 November 2008, Communique, COAG, Canberra, viewed 6 August 2010,

COAG (Council of Australian Governments) 2008d, National Indigenous Reform Agreement (Closing the Gap), COAG, Canberra, viewed 8 August 2010,

COAG (Council of Australian Governments) 2009, Council of Australian Governments’ Meeting, Hobart, 30 April, Communique, COAG, Canberra, viewed 8 August 2010, < http://www.coag.gov.au/coag_meeting_outcomes/2009-04-30/docs/20090430_communique.pdf

COAG (Council of Australian Governments) 2009a, Council of Australian Governments’ Meeting, Darwin, 2 July, Communique, COAG, Canberra, viewed 8 August,

COAG (Council of Australian Governments) 2009b, Council of Australian Governments’ Meeting, Brisbane, 7 December, Communique, COAG, Canberra, viewed 8 August,

COAG (Council of Australian Governments) 2009c, National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes, COAG, Canberra, viewed 19 May 2010,

COAG (Council of Australian Governments) 2010, Council of Australian Governments’ Meeting, Canberra, 19 and 20 April 2010, Communiqué, COAG, Canberra, viewed 4 August 2010,

COAG (Council of Australian Governments) 2010a, Intergovernm ental Agreement (IGA) on Federal Financial Relations, COAG, Canberra, Viewed 8 August 2010,

88 COAGRC (Council of Australian Governments Reform Council) 2010, National Indigenous Reform Agreement: Baseline performance report for 2008-09. Report to the Council of Australian Governments 30 April 2010, COAGRC, Sydney, viewed 9 August 2010,

COAGRC (Council of Australian Governments Reform Council) 2010a, National Healthcare Agreement: Baseline performance report for 2008-09. Report to the Council of Australian Governments 30 April 2010, COAGRC, Sydney, viewed 9 August 2010,

Couzos, S. & Murray, R.B. 2008, ‘Health, Human Rights, and the Policy Process’, in Aboriginal Primary Health Care: An Evidence-based Approach, 3rd edn, eds S. Couzos & R. Murray, Oxford University Press, Melbourne.

Couzos, S., Taylor, H.R. & Wright, H.R. 2008, ‘Trachoma’, in Aboriginal Primary Health Care: An Evidence-based Approach, 3rd edn, eds S. Couzos & R. Murray, Oxford University Press, Melbourne. Chapter 18, pp. 708-31

Dugdale, P. 2008, Doing Health Policy in Australia, Allen & Unwin, Sydney.

Dugdale, P. & Arabena, K. 2008, ‘Doing Indigenous Health Policy’, in Doing Health Policy in Australia, P. Dugdale, Allen & Unwin, Sydney.

Durkin, S.R., Casson, R., Newland, H.S. & Selva, D. 2006, ‘Prevalence of trachoma and diabetes-related eye disease among a cohort of adult Aboriginal patients screened over the period 1999-2004 in remote South Australia’, Clinical and Experimental Ophthalmology, vol. 34, pp. 329-334.

EHSC (Education and Health Standing Committee) 2006, Swimming Pool Program in Remote Communities, Report no. 2 in the 37th Parliament, Perth.

Edwards, M. 2010, Policy Roundtable Report: Addressing Indigenous Disadvantage: Setting the framework for real and sustained progress, ASSA & IPAA, Canberra, viewed 10 August 2010,

Ejere, H.O.D., Alhassan, M.B. & Rabiu, M. 2004, ‘Face washing promotion for preventing active trachoma’, Cochrane Database of Systematic Reviews, Issue 3 Art. No: CD003659. DOI: 10.1002/14651858.CD003659.pub2., viewed 29 July 2010,

Emerson, P.M., Burton, M., So lomon, A.W., Bailey, R. & Mabey, D. 2006, ‘The SAFE strategy for trachoma control: using operational research for policy, planning and implementation’, Bulletin World Health Organisation, vol. 84, pp. 613-619.

Ewald, D., Nunrarrayi, C.W., Hall, G. & Franks, C. 1999, ‘Trachoma program eectiveness in a central Australian setting’, Australasian Epidemiologist, vol. 6, no. 3, p. 11.

Ewald, D. & Hall, G. 2001, Housing and Health: Evaluation of heal th outcomes in a Central Australian Community 12 months after the rst round of NAHS-EHP works, Second Stage report January 2001, Health Devel opment Territory Health Services, Alice Springs.

Ewald, D.P., Hall, G.V. & Franks, C.C. 2003, ‘An evaluation of a SAFE-style trachoma control program in Central Australia’, Medical Journal of Australia, vol. 178, pp. 65-68.

89 EF (Eye Foundation) 2010, The Central Australia Eye Health Program, RANZCO, Sydney, viewed 26 July 2010,

Fiske, P. & Johnson, M. 1995, Memories of Fred, ABC, Sydney.

Foley, G. 1982, ‘Aboriginal community controlled health services – a short history’, Aboriginal Health Project Information Bulletin, no. 2, pp. 13-15.

Foley, G. 1991, ‘Redfern Aboriginal Medic al Service: 20 years on’, Aboriginal & Islander Health Worker Journal, vol. 15, no. 4, pp. 4-8.

Franklin, M.-A. & White, I. 1991, ‘The history and politics of Aboriginal health’, in The Health of Aboriginal Australia, eds. J. Reid & P. Trompf, Harcourt Brace Jovanovich, Sydney.

FHF (Fred Hollows Foundation) 1995, Annual Report 1995, The Fred Hollows Foundation, FHF, Sydney, viewed 14 June 2010,

FHF (Fred Hollows Foundation) 1996, Annual Report 1996, The Fred Hollows Foundation, FHF, Sydney.

FHF (Fred Hollows Foundation) 1997, Annual Report 1997, The Fred Hollows Foundation, FHF, Sydney, viewed 14 June 2010,

FHF (Fred Hollows Foundation) 1998, Annual Report 1998, The Fred Hollows Foundation, FHF, Sydney, viewed 14 June 2010,

FHF (Fred Hollows Foundation) 2002, Through Other Eyes: The Fred Hollows Foundation Ten Years On, Pan Macmillan Australia, Sydney.

FHF (Fred Hollows Foundation) 2006, Annual Report 2006, The Fred Hollows Foundation, FHF Sydney, viewed 26 July 2010,

FHF (Fred Hollows Foundation) 2007, Annual Report 2007, The Fred Hollows Foundation, FHF Sydney, viewed 26 July 2010,

FHF (Fred Hollows Foundation) 2008, Annual Report 2008, The Fred Hollows Foundation, FHF Sydney, viewed 26 July 2010,

FHF (Fred Hollows Foundation) 2009, Annual Report 2009, The Fred Hollows Foundation, FHF Sydney, viewed 26 July 2010,

Fyfe, M. 2002, ‘Backyard business: The Fred Hollows Foundation in Indigenous Australia, in Through Other Eyes: The Fred Hollows Foundation Ten Years On, Pan Macmillan Australia, Sydney.

Gardiner Garden, J. 1994, ‘Innovation without change? Commonwealth involvement in Aboriginal health policy’, Current issues brief no. 12, Department of the Parliamentary Library, Canberra, viewed 3 June 2010,

Goldhaber, G. 1993, Organizational Communication, Sixth Edition, WCB Brown & Benchmark, Madison, Wisconsin.

90 Graham, P.A. 1968, ‘De nition of pre-glaucoma: a prospective study’, Transactions Ophthalmology Society UK, vol. 88, pp. 153-165.

Graham, P.A. & Hollows, F.C. 1964, ‘Sources of variation in tonometry’, Transactions of the Ophthalmological Societies of the United Kingdom, vol. 84, pp. 597-613.

Graham, P.A. & Hollows, F.C. 1966, ‘A critical review of methods of detecting glaucoma’, in Glaucoma: Epidemiology, Early Diagnosis and some aspects of treatment, Proceedings of a Symposium held at The Royal College of Surgeons of England, June 1965, pp. 103-115, E&S Livingstone Ltd, Edinburgh and London.

Gray, D.O. 1976, The Delivery of Services Financed by the Department of Aboriginal Aairs, AGPS, Canberra.

Griew, R., Sibthorpe, B., Anderson, I., Eades, S. & Wilkes, T. 2004, ‘‘On Our Terms’: The politics of Aboriginal health in Australia’, in Accessing healthcare: Responding to diversity, eds J. Healy & M. Mckee, Oxford Un iversity Press, Oxford.

Gruen, R.L. & Bailie, R.S. 2000, Evaluation of the Specialist Outreach Service in the Top End of the Northern Territory, Menzies School of Health Research, Darwin.

Gruen, R.L., Bailie, R.S., d’Abbs, P.H., O’Rouke, I.C., O’Brien, M.M. & Verma, N. 2001, ‘Improving access to specialist care for remote Aboriginal communities: evaluation of a specialist outreach service’, Medical Journal of Australia, vol. 174, no. 10, pp. 507-11.

Gruen, R.L., Weeramanthri, T.S. & Bailie, R.S. 2002, ‘Outreach and improved access to specialist services for indigenous people in remote Australia: the requirements for sustainability’, J Epidemiol Community Health, vol. 56, no. 7, pp. 517-21.

Gruen, R.L., Weeramanthri, T.S., Knight, S.S. & Bailie, R.S. 2003, ‘Specialist outreach clinics in primary care and rural hospital settings’, Cochrane Database of Systematic Reviews, Issue 4. Art. No.: CD003798. DOI: 10.1002/14641858.CD003798.pub2, viewed 1 August 2010,

Gruen, R.L., Bailie, R.S., Wang, Z., Heard, S. & O’Rourke, I.C. 2006, ‘Specialist outreach to isolated and disadvantaged communities: A population-based study’, Lancet vol. 368, issue 9530, pp. 130–38.

Hall, G. & Sibthorpe, B. 2003, ‘Health bene ts of swimming pools in remote Aboriginal communities’, British Medical Journal, vol 327, pp. 407-8.

Hall, G. & Sibthorpe, B. 2003, ‘Health bene ts of swimming pools in remote Aboriginal communities’, British Medical Journal, vol 327, pp. 407-8.

Hardy, D., Surman, P. & Howarth, W. 1967, ‘Cytological survey of conjunctival smears from Aboriginal school children at Yalata, South Australia’, British Journal of Ophthalmology, vol. 51, pp. 54-6

HREOC (Human Rights and Equal Opportunity Commission) 2005, Social Justice Report 2005, Aboriginal and Torres St rait Islander Social Justice Commissioner, HREOC, Sydney, viewed 5 August 2010,

HREOC (Human Rights and Equal Opportunity Commission) 2008, Close the Gap National Indigenous Health Equality Targets: Outcomes from the National Indigenous Health Equality Summit, Canberra March 18-20, 2008, HREOC, Sydney, viewed 5 August 2010,

HPEPL (Healthcare Planning and Evaluation Pty. Ltd.) 2009, Evaluation of the sustainability and bene ts of swimming pools in the Anangu Pitjantjatjara Yankunytjatjara Lands (APY Lands) in South Australia, CDHA, Canberra, viewed 16 June 2010,

Hollows, F. 1984, ‘Aboriginal Disease Patterns and Medical Systems for Aborigines’, in Perspectives on Health Policy: Proceedings of a Public Aairs Conference held at the Australian National University, Canberra, 27-29 July, 1982, ed M. Tatchell, Health Economics Research Unit, ANU, Canberra, pp159-164.

Hollows, F.C. & Graham, P.A. 1966a, ‘Intra-ocular pressure, glaucoma, and glaucoma suspects in a de ned population’ British Journal of Ophthalmology, vol. 50, pp. 570-586.

Hollows, F.C. & Graham, P.A. 1966b, ‘The Ferndale Glaucoma Survey’, in Glaucoma: Epidemiology, Early Diagnosis and some aspects of treatment, Proceedings of a Symposium held at The Royal College of Surgeons of England, June 1965, pp. 24-44, E&S Livingstone Ltd, Edinburgh and London.

Hollows, F. & Corris, P. 1997, Fred Hollows: An autobiography, Kerr Publishing, Sydney.

HRSCAA (House of Representatives Standing Committee on Aboriginal Aairs) 1979, Inquiry into Aboriginal Health Report Aboriginal Health, viewed 28 may 2010,

HRSCFCA (House of Representatives Standing Committee on Family and Community Aairs) 2000, Health is Life: Report on the Inquiry into Indig enous Health, Parliament of Australia House of Representatives, Canberra, viewed 11 August 2010,

Houston, S. 1989, ‘National Aboriginal Health Strategy Working Party’, Aboriginal Health Worker, vol. 13, no. 4, pp. 7-8.

HREOC (Human Rights and Equal Opportunity Commission) 1997, Bringing them home: National Enquiry into the Separation of Aboriginal and Torres Strait Islander Children from their Families, HREOC, Sydney, viewed 11 August 2010,

HREOC (Human Rights and Equal Opportunity Commission) 2004, Social Justice Report 2004, Aboriginal and Torres Strait Islander Social Justice Commissioner, HREOC, Sydney, viewed 11 August 2010,

ICEH (International Centre for Eye Health) 2010, Trachoma & SAFE, viewed 29 July 2010,

Jaross, N., Ryan, P. & Newland, H. 2003, ‘Prevalence of diabetic retinopathy in an Aboriginal Australian population: results from the Katherine Region Diabetic Retinopathy Study (KRDRS). Report no. 1’, Clinical and Experimental Ophthalmology, vol. 31, pp. 32-39.

Jaross, N., Ryan, P. & Newland, H. 2005, ‘Incidence and progression of diabetic retinopathy in an Aborig inal Australian population: results from the Katherine Region Diabetic Retinopathy Study (KRDRS). Report no. 2’, Clinical and Experimental Ophthalmology, vol. 33, pp. 26-33. 92 Jones, J.N. 2005, ‘Jilpia Jones: The history of my nursing’, in In Our Own Right: Black Australian Nurses’ Stories, eds S.S. Goold & K. Liddle, eContent Management, Maleny, Queensland.

Jones, J.N., Buzzacott, T., Briscoe, G., Murray, R., & Murray, R. 2008, Beyond Sandy Blight: Five Aboriginal experiences as sta on the National Trachoma and Eye Health Program, AIATSIS & CRCAH, Canberra & Darwin, viewed 23 May 2010,

Kaplan-Myrth, N. 2003, Hard Yakka: A Study of the Community-Government Relations that Shape Australian Aboriginal Health Policy and Politics. A Dissertation Presented to the Faculty of the Graduate School of Yale University In Candidacy for the Degree of Doctor of Philosophy.

Kaplan-Myrth, N. 2004, Political Visions: Blindness Prevention Policy as a Case Study of Community- Government Relations in Aboriginal Health, VicHealth Koori Health Research & Community Development Unit, Centre for the Study of Health and Society, University of Melbourne, Discussion Paper no. 10. viewed 3 June 2010,

Kaplan-Myrth, N. 2007, Hard Yakka: transforming indigenous health policy and politics, Lexington Books, Lanham, Maryland, viewed 27 May 2010,

Kelaher, M., Dunt, D., Thomas, D. & Anderson, I. 2005, ‘Comparison of the uptake of health assessment items for Aboriginal and Torres Strait Islander people and other Australians: Implications for policy’, Australia and New Zealand Health Policy, vol 2:21 doi:10.1186/1743-8462-2-21, viewed 26 May 2010,

Kelaher, M., Ferdinand, A., Ngo, S., Tambuwla, N. & Taylor, H.R. 2010, Access to Eye Health Services Among Indigenous Australians: An Area Level Analysis, Indigenous Eye Health Unit, Melbourne School of Population Health, The University of Melbourne, viewed 24 May 2010,

Kimberley Aboriginal Medical Services’ Council, 1998, Recommendations for Clinical Care Guidelines on the Management of Non-Insulin-Dependent Diabetes in Aboriginal and Torres Strait Islander Populations. Commonwealth of Australia, Canberra.

Kuper, H., Solomon, A.W., Buchan, J., Zondervan, M., Foster, A. and Mabey, D. 2003, ‘A critical review of the SAFE strategy for the prevention of blinding trachoma’, Lancet Infect Dis, vol. 3, pp. 372-381.

Laming, A., Currie, B., DiFrancesco, M., Taylor H.R. & Mathews, J. 2000, ‘A targeted, single-dose azithromycin strategy for trachoma’, Medical Journal of Australia vol. 172, pp. 163-166.

Lansingh, V. C., Weih, L. M., Keee, J. E. & Taylor, H. R. 2001, ‘Assessment of trachoma prevalence in a mobile population in Central Australia’, Ophthalmic Epidemiology vol. 8, no. 2, pp. 97-108.

Lansingh,V. C., Mukesh B. N., Keee J.E., & Taylor H.R. 2010, ‘Trachoma control in two Central Australian Aboriginal communities: a case study’. Int Ophthalmol vol. 30, pp. 367-375.

Leggatt, J. 2002, ‘Return to holistics: The indigenous health programs, Northern Territory, Australia’, in Through Other Eyes: The Fred Hollows Foundation Ten Years On, Pan Macmillan Australia, Sydney.

93 Lehmann, D., Tennant, M., Silva, D., McAullay, D., Lannigan, F., Coates, H., & Stanley, F. 2003, ‘Bene ts of swimming pools in two remote Aboriginal communities in Western Australia – intervention study’, British Medical Journal vol. 327, pp. 415-9.

Lynskey, M. 2002, ‘Preface’, in Through Other Eyes: The Fred Hollows Foundation Ten Years On, Pan Macmillan, Sydney.

Mabey, D., Fraser-Hurt, N. & Powell, C. 2005, ‘Antibiotics for trachoma’, Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD001860. DOI: 10.1002/14651858.CD001860.pub2., viewed 29 July 2010,

Mann, I. 1966, Culture, Race, Climate and Eye Disease: An introduction to the study of Geographical Ophthalmology, Charles C. Thomas, Spring eld Illinois.

Mann, I. 1983, The Chase: an autobiography, ed. R. Golding, Freemantle Arts Centre Press, Fremantle.

Mathews, A., McDonnell, C., Benson, J., Taylor, H. 2009, ‘Eect of swimming pools on antibiotic use and clinic attendance for infections in two Aboriginal communities in Western Australia – letter’ Medical Journal of Australia, vol. 191, pp. 410-1.

Matthews, A., Jackson Pulver, L.R. & Ring, I.T. 2008, ‘Strengthening the link between policy formulation and implementation of Indigenous health policy directions’, Australian Health Review, vol. 32, no. 4, pp. 613-26, viewed 18 May 2010,

Mayers, N. 1982, Report to the Trachoma & Eye Health Committee of the Royal Australian College of Ophthalmologists, RACO, Sydney

McMichael, T. 1989, ‘A National Aboriginal Health Strategy’, Aboriginal Health Information Bulletin, no. 12, pp. 36-38.

Mechanic, D. 1979, Future Issues in Health Care, The Free Press, New York.

MA (Medicare Australia) 2010, ‘Indigenous Health’, viewed 3 August 2010, < http://www.medicareaustralia.gov.au/provider/patients/indigenous.jsp

MP (Medibank Private) 2010, ‘History’, viewed 23 July 2010,

MCFFR (Ministerial Council for Federal Financial Relations) 2010, National Partnerships – Indigenous, The Treasury, Canberra, viewed 5 August 2010,

More, E. 1998, Managing change: Exploring state of the art, JAI Press, Greenwich, CT.

Murray, R.B., Bell, K., Couzos, S., Grant, M. & Wronski, I. 2003, ‘Aboriginal health and the policy process’, in Aboriginal Primary Health Care: An Evidence-based Approach, 2nd edn, eds S. Couzos & R. Murray, Oxford University Press, Melbourne.

Murray, R.B., Metcalf, S.M., Lewis, P.M., Mein, J.K. & McAllister, I.L. 2005, ‘Sustaining remote-area programs: retin al camera use by Aboriginal health workers and nurses in a Kimberley partnership’, Medical Journal of Australia, vol. 182, no. 10, pp. 520-523. 94 Nathan, P. 1980, ‘A home away from home’: A study of the Aboriginal Health Service in Fitzroy, Victoria, Preston Institute of Technology Press, Bundoora, Victoria.

Nathan, P. & Leichleitner Japanangka, D. 1983, Health Business: A community report for the Central Australian Aboriginal Congress and its people, Heinemann Educational Australia, Richard, Victoria.

NACCHO (National Aboriginal Community Controlled Health Organisation) 2008a, Aboriginal Community Controlled Sector at a glance, viewed 24 May 2010,

NACCHO (National Aboriginal Community Controlled Health Organisation) 2008b, History, viewed 24 May 2010,

NACCHO (National Aboriginal Community Controlled Health Organisation) 2008c, Aliates, viewed 29 June 2010,

NACCHO (National Aboriginal Community Controlled Health Organisation) 2008d, Ethical Research Guidelines, viewed 4 July 2010,

NACCHO & OA (National Aboriginal Community Controlled Health Organisation & Oxfam Australia) 2007, OA, Melbourne, viewed 5 August 2010,

NAHSEC (National Aboriginal Health Strategy Evaluation Committee) 1994, The National Aboriginal Health Strategy: An EvaluatiDon ecember 1994, ATSIC, Canberra, viewed 13 August 2010,

NAHSWP (National Aboriginal Health Strategy Working Party) 1989, A National Aboriginal Health Strategy: Report of the National Aboriginal Health Strategy Working Party, Australian Government Publishing Service, Canberra, viewed 22 May 2010,

NATSIHC (National Aboriginal and Torres Strait Islander Health Council) 2001, National Aboriginal and Torres Strait Islander Health Strategy: Draft for Discussion, February 2001, CDHAC, Canberra.

NATSIHC (National Aboriginal and Torres Strait Islander Health Council) 2004a, National Strategic Framework for Aboriginal and Torres Strait Islander Health 2003-2013: Context, CDHA, Canberra, viewed 15 July 2010,

NATSIHC (National Aboriginal and Torres Strait Islander Health Council) 2004b, National Strategic Frame- work for Aboriginal and Torres Strait Islander Health 2003-2013: Framework for action by governments, CDHA, Canberra, viewed 15 July 2010,

NAA (National Archives of Australia) 2008, Fact Sheet 112 – Royal Commission into Aboriginal Deaths in Custody, viewed 7 June2010,

NIHEC (National Indigenous Health Equality Council) 2010, National Target Setting Instrument: Evidence Based Best Practice Guide, CDHA, Canberra, viewed 4 August 2010,

95 NIHEC (National Indigenous Health Equality Council) 2010a, Child Mortality Target: Analysis and Recommendations, CDHA, Canberra, viewed 4 August 2010,

NHMRC (National Health and Medical Research Council) 1991, Guidelines on ethical matters in Aboriginal and Torres Strait Islander health research, NHMRC, Canberra, viewed 4 July 2010,

NHMRC (National Health and Medical Research Council) 1997, Management of Diabetic Retinopathy. Clinical Practice Guidelines. Working Party on Diabetic Retinopathy, AGPS, Canberra.

NHMRC (National Health and Medical Research Council) 2003, Values and Ethics: Guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research, NHMRC, Canberra, viewed 19 M ay 2010,

NHMRC (National Health and Medical Research Council) 2005, Keeping research on track: a guide for Aboriginal and Torres Strait Islander peoples about health research ethics, NHMRC, Canberra, viewed 4 July 2010,

NHMRC (National Health and Medical Research Council) 2007, National Statement on Ethical Conduct of Research Involving Humans, NHMRC, Canberra, viewed 19 May 2010,

NHMRC (National Health and Medical Research Council) 2008, Guidelines for the Management of Diabetic Retinopathy. Australian Diabetic Society for the Department of Health and Ageing, Commonwealth of Australia, Canberra.

NHMRC (National Health and Medical Research Co uncil) 2010, The NHMRC Road Map II: A strategic framework for improving the health of Aboriginal and Torres Strait Islander people through research, NHMRC, Canberra, viewed 4 August 2010,

NTEHP (National Trachoma and Eye Health Program) 1982, ‘Current Topics. The National Trachoma and Eye Health Program’, Aboriginal Health Project information bulletin, no. 1, p. 4.

Newfong, J. 1989, ‘Aboriginal Australia – the reality and not the myth’, in A National Aboriginal Health Strategy: Report of the National Aboriginal Health Strategy Working Party, Australian Government Publishing Service, Canberra, viewed 22 May 2010,

NTDHF (Northern Territory Department of Health and Families) 2008, Guidelines for Management of Tracho ma in the Northern Territory, 2nd edn, Centre for Disease Control, NTDHF, Darwin, viewed 29 July 2010,

OATSIHS (Oce for Aboriginal and Torres Strait Islander Health Services) 1997, Implementation plan to address recommendations from report by Professor Hugh Taylor , Eye Health in Aboriginal and Torres Strait Islander Communities, OATSIHS, Canberra.

OATSIH (Oce for Aboriginal and Torres Strait Islander Health) 2001, Specialist Eye Health Guidelines for use in Aboriginal and Torres Strait Islander Populations, OATSIH, Canberra.

96 OAA (Optometrists Association of Australia) 2000a, ‘Aboriginal and Torres Strait Islander population need greatest’, Optometry, vol. 21, no. 3, p. 3.

OAA (Optometrists Association of Australia) 2000b, ‘Government funding goes bush: Financial assistance for taking services to remote Australia’, Optometry, vol. 21, no. 8, p. 3.

OAA (Optometrists Association of Australia) 2000c, ‘Projects deliver Aboriginal and Torres Strait Islander eye care’, Optometry , vol. 21, no. 9, p. 7 & 12.

O’Loughlin, T. 2002, ‘Between two worlds: The Northern Territory’, in Through Other Eyes: The Fred Hollows Foundation Ten Years On, Pan Macmillan Australia, Sydney.

Osborne, P.D. 1982, The other Australia: The crisis in Aboriginal health, Occasional Monograph 2, Department of Political Science, University of Tasmania, Hobart.

PADPSPL (Parliament of Australia Department of Parliamentary Services Parliamentary L ibrary) 2007, Northern Territory National Emergency Response Bill 2007, PADPSPL, Canberra, viewed 11 August 2010, < http://www.aph.gov.au/library/pubs/BD/2007-08/08bd028.pdf

PAPL (Parliament of Australia Parliamentary Library) 2005, Medicare – Background Brief, viewed 28 May 2010,

Peach, H., Piper, S., Devanesen, D., Dixon, B., Jeries, C., Braun, P. et al 1987, Northern Territory Trachoma Control and Eye Health Committee’s Randomised Controlled Trial of the Eect of Eye Drops and Eye Washing on Follicular Trachoma among Aboriginal Children, Report of the Northern Territory Trachoma Control and Eye Health Committee Incorporated, Darwin.

P&TSRHA (Peninsula & Torres Strait Regional Health Authority) 1993, Torres Strait Health Strategy 1993, P&TSRHA, Thursday Island.

Podger, A. 2010, ‘National President’s Column’, Public Administration Today, April-Ju ne 2010, IPAA, Canberra.

Polack, S., Brooker, S., Kuper, H., Mariotti, S., Mabey, D. & Foster, A. 2005, ‘Mapping the global distribution of trachoma’, Bull World Health Organisation, vol. 83, no. 12, pp. 913-919, viewed 16 July 2010, viewed

Porta, M. (ed) 2008, A Dictionary of Epidemiology, 5th edn, Oxford University Press, Oxford.

PER (Program Eectiveness Review) 1980, Aboriginal Health, Department o f Prime Minister and Cabinet, Canberra.

Rabiu, M., Alhassan, M.B. & Ejere, H.O.D. 2007, ‘Environmental sanitary interventions for preventing active trachoma’, Cochrane Database of Systematic Reviews, Issue 4. Art. No.: CD004003. DOI: 10.1002/14651858.CD004003.pub3., viewed 29 July 2010,

Roe, Y., & McDermott, R. 2009, ‘Eect of swimming pools on antibiotic use and clinic attendance for infections in two Aboriginal communities in Western Australia – letter’, Medical Journal of Australia, vol. 190, p. 602.

Rose, G. 1992, The Strategy of Preventative Medicine, Oxford University Press, Oxford. 97 RACO (Royal Australian College of Ophthalmologists) 1980, National Trachoma & Eye Health Program, RACO, Sydney.

RANZCO (Royal Australian and New Zealand College of Ophthalmologists) 2010, College Tradition, RANZCO, Sydney, viewed 14 August 2010,

RCIADIC (Royal Commission into Aboriginal Deaths in Custody) 1991a, National Report Volume 4 – Rationale: Appropriate Primary Health Care, AGPS, Canberra, viewed 22 June 2010,

RCIADIC (Royal Commission into Aboriginal Deaths in Custody) 1991b, National Report Volume 4 – The National Aboriginal Health Strategy, AGPS, Canberra, viewed 22 June 2010,

RCIADIC (Royal Commission into Aboriginal Deaths in Custody) 1991c, National Report Volume 4 – The handling of speci c health conditions, AGP S, Canberra, viewed 22 June 2010,

RCIADIC (Royal Commission into Aboriginal Deaths in Custody) 1991d, National Report Volume 4 - Other initiatives, AGPS, Canberra, viewed 22 June 2010,

RCIADIC (Royal Commission into Aboriginal Deaths in Custody) 1991e, National Report Volume 5 - Recommenda tions, AGPS, Canberra, viewed 22 June 2010,

Rubin, T., Franklin, R.C., Scarr, J. & Peden, A. 2008, Facilities, Programs and Services for the Water Safety of Aboriginal and Torres Strait Islanders in Rural and Remote Australia, Issues paper, Australian Water Safety Council, Sydney, viewed 16 June 2010,

Rudd , K. 2009, $58.3m boost for Indigenous eye and ear health. (Joint Media Release with The Hon Jenny Macklin MP), viewed 1 November 2010, http://www.jennymacklin.fahcsia.gov.au/mediareleases/2009/Pages/indigenous_eye-he...

Saggers, S. & Gray, D. 1991a, ‘Policy and practice in Aboriginal health’, in The Health of Aboriginal Australia, eds J. Reid & P. Trompf, Harcourt Brace Jovanovich, Sydney.

Saggers, S. & Gray, D. 1991b, Aboriginal Health and Society: The Traditional and Contemporary Aboriginal Struggle for Better Health, Allen & Unwin, Sydney.

Sax, S. 1984, A Strife of Interests: Politics and Policies in Australian Health Services, Allen & Unwin, Sydney.

Scho eld, M. & Jamieson, M. 1999, ‘Sampling in quantitative research’, in Handbook for research methods in health sciences, eds V. Minichiello, G. Sullivan, K. Greenwood, & R. Axford, Addison Wesley, Sydney.

Silva, D., Lehmann, D., Tenn ant, M., Jacoby, P., Wright, H., & Stanley, F. 2008, ‘Eect of swimming pools on antibiotic use and clinic attendance for infections in two Aboriginal communities in Western Australia’, Medical Journal of Australia, vol. 188, pp. 594-8.

Snooks & Co 2002, Style Manual for Authors, Editors and Printers, 6th edn, John Wiley & Sons, Milton, Queensland. 98 Snowdon, W. 2010, Investing in Sight-Saving Eye Care in the NT and WA, viewed 3 August 2010,

Snowdon, W. 2010a, Eye care boost for 106 remote Indigenous communities, viewed 3 August 2010,

Snowdon, W. 2010b, Agreed Terms of Reference for Central Australia Renal Study, viewe d 4 August 2010,

SCRGSP (Steering Committee for the Review of Government Service Provision) 2009, Overcoming Indig- enous Disadvantage: Key Indicators 2009, AGPC, Canberra, viewed 9 August 2009,

Stoelwinder, J.U. 1983, ‘A second alternative view of the medical common’, Australian Health Review, vol. 6, no. 4¸ pp. 81-82.

Studdert, D.M., Vu, T.M., Fox, S.S., Anderson, I.A., Keefe, J.E. & Taylor, H.R. 2010, ‘Ethics review of multisite studies: the dicult case of community-based Indigenous health research’, Medical Journal of Australia, vol. 192, no. 5, pp. 275-280.

TFFNTEHP (Task Force on the Future of the National Trachoma and Eye Health Program) 1984, The Task Force on the Future of the National Trachoma and Eye Health Program. Report to the Minister for Health, Com- monwealth Department of Health, Canberra.

Tatz, C.M. 1964, Aboriginal Administration in the Northern Territory of Australia, PhD thesis, The Australian National University.

Taylor, H., West, S., Katala, S. & Foster, A. 1987, ‘Trachoma: Evaluation of a new grading scheme in the United Republic of Tanzania’, Bulletin of the World Health Organisation, vol. 65, no. 4, pp. 485-488, viewed 13 August 2010,

Taylor, H.R. 1978, Vision of Australian Aborigines: The distribution of visual acuity and refraction error in Aborigines, and the prevalence of cases of blindness, MD thesis, University of Melbourne.

Taylor, H.R. 1997, Eye Health in Aboriginal and Torres Strait Islander Communities, OATSIHS, Canberra.

Taylor, H.R. 2002, ‘Eye care for the community’, Clinical and Experimental Ophthalmology, vol. 30, pp. 151- 154.

Taylor, H.R. 2008, Trachoma: A Blinding Scourge from the Bronze Age to the Twenty rst Century, Haddington Press, Melbourne.

Taylor, H.R. & Fox, S.S. 2008, ‘Ethical hurdles in Indigenous research’, Australian and New Zealand Journal of Public Health, vol.32, no. 5, pp. 489-490.

Taylor, H.R., Keee, J., Arnold, A.L., Dunn, R.A., Fox, S., Goujon, N., Xie, J., Still, R., Burnett, A., Marolia, M., Shemesh, T., Carrigan, J. & Stanford, E. 2009, National Indigenous Eye Health Survey: Minum Barreng, Indigenous Eye Health Unit, Melbourne School of Population Health, The University of Melbourne, viewed 24 May 2010,

99 Taylor, H.R. & Stanford, E. 2010, Provision of Indigenous Eye Health Services, Indigenous Eye Health Unit, Melbourne School of Population Health, The University of Melbourne, viewed 24 May 2010,

Taylor, H.R., Xie, J., Fox, S., Dunn, R., Arnold, A-L., & Keee, J. 2010, ‘The prevalence and causes of vision loss in Indigenous Australians: the National Indigenous Eye Health Survey’, Medical Journal of Australia, vol. 192, no. 6, pp. 312-318.

Taylor, V., Ewald, D., Liddle, H. & Warchivker, I. 2004, Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program, Centre for Remote Health, Alice Springs.

Tellis, B., Dunn, R., Keee, J. & Taylor, H. 2007, Trachoma Surveillance Report 2006, National Trachoma Surveil- lance and Reporting Unit, Centre for Eye Research Australia, University of Melbourne, viewed 16 July 2010,

Tellis, B., Dunn, R., Keee, J. & Taylor, H. 2007a, ‘Surveillance Report for Active Trachoma, 2006’, Commun Dis Intell, vol. 31, pp. 366-374, viewed 16 July 2010,

Tellis, B., Dunn, R., Keee, J. & Taylor, H. 2008, Tracho ma Surveillance Report 2007, National Trachoma Surveillance and Reporting Unit, Centre for Eye Research Australia, University of Melbourne, viewed 16 July 2010,

Tellis, B., Dunn, R., Keee, J. & Taylor, H. 2008a, ‘Trachoma Surveillance Report 2007’, Commun Dis Intell, vol. 32, pp. 388-399, viewed 16 July 2010,

Tellis, B., Fotis, K., Dunn, R., Keee, J. & Taylor, H. 2009, Trachoma Surveillance Report 2008, National Trachoma Surveillance and Reporting Unit, Centre for Eye Research Australia, University of Melbourne, viewed 16 July 2010,

Tellis, B., Fotis, K., Keee, J. & Taylor, H. 2009a, ‘Trachoma surveillance annual report, 2008’, Communicable Diseases Intelligence, vol. 33, no. 3, pp. 275-90, viewed 16 July 2010,

TCC (The Cochrane Collaboration) 2010, The Cochrane Collaboration: Working together to provide the best evidence for health care, viewed 27 June 2010,

Thomas, H.F. 1999, ‘Editorial. Medical research in the Rhondda valleys’, Postgraduate Medicine, vol. 75, pp. 257-259.

Thomson, N. 1984, ‘Australian Aboriginal Health and Health-Care’, Social Science & Medicine, vol. 18, no. 11, pp. 939-948.

100 Thomson, N. 1985, Aboriginal Health: Status, Programs and Prospects, Discussion Paper no. 1, Legislative Research Service, Department of the Parliamentary Library, Canberra.

Thomson, N. & Merri eld, P. 1988, Aboriginal Health: An annotated bibliography, Australian Institute of Aboriginal Studies, Canberra.

Thomson, N. & Paterson, B. 1998, Eye Health of Aboriginal and Torres Strait Islander People, Aboriginal and Torres Strait Islander Healt h Reviews no. 1, National Aboriginal and Torres Strait Islander Health Clearinghouse, Edith Cowan University, Perth.

Thylefors, B., Dawson, C.R., Jones, B.R., West, S.K. & Taylor, H.R. 1987, ‘A simple system for the assessment of trachoma and its complications’, Bulletin of the World Health Organisation, vol. 65, no. 4, pp. 477-483, viewed 7 June 2010, http://whqlibdoc.who.int/bulletin/1987/Vol65-No4/bulletin_1987_65(4)_477-483.pdf

TSI&NPAHC (Torres Strait Isl ander & Northern Peninsula Area Health Council) 1996, Torres Strait. Implementation of the Torres Strait Health Strategy: The Provision and Management of Quality Essential Primary Health Care Services, TSI&NPAHC, Thursday Island.

Toussaint, S. 1982, ‘More understanding in policy making’, The Aboriginal Health Worker, vol. 6, no. 2, pp. 14-18.

Turner, A., Mulholland, W. & Taylor, H.R. 2009, Outreach eye services in Australia, Indigenous Eye Heal th Unit, Melbourne School of Population Health, The University of Melbourne, viewed 1 August 2010,

UKY (Urbis Keys Young) 2006, Aboriginal and Torres Strait Islander Access to Major Health Programs, Prepared for: Medicare Australia and the Department of Health and Ageing, UKY, Sydney, viewed 3 August 2010,

V2020A (Vision 2020 Australia) 2007, Vision 2020 Australia Member Forum Outcomes 27 July 2007, viewed 24 July 2010,

V2020A (Vision 2020 Australia) 2010, Vision 2020 Australia: The Right to Sight Australia, viewed 21 June 2010,

V2020 (Vision 2020) 2010, Vision 2020: The Right to Sight, viewed 21 June 2010,

Vos, T., Barker, B., Stanley, L. & Lopez, A.D. 2007, The burden of disease and injury in Aboriginal and Torres Strait Islander peoples 2003, School of Population Health, The University of Queensland, Brisbane, viewed 2 August 2010,

Waterford, J. 1982, ‘The Aboriginal medical services – A uniquely Australian phenomenon’, Aboriginal Health Project Information Bulletin, no. 2, pp. 16-21.

West, S.K. 2003, ‘Blinding trachoma: Prevention with the SAFE strategy’, Am. J. Trop. Med. Hyg. Vol. 69, Suppl 5, pp. 18-23.

Wild, R. & Anderson, P. 2007, Ampe Akelyernemane Meke Mekarle: “Little Children are Sacred”: Report of the Northern Territory Board of Enquiry into the Protection of Children from Sexual Abuse, NT Government, Darwin, viewed 11 August 2010,

WHO (World Health Organisation) 2003, Report of the 2nd Global Scienti c Meeting on Trachoma 25-27 August 2003, WHO, Geneva, viewed 16 July 2010,

WHO (World Health Organisation) 2003a, Elimination of avoidable blindness, Fifty- sixth World Health Assembly Resolution WHA 56.26, viewed 16 July 2010,

WHO 2010, Water-related disease, viewed 16 June 2010,

WHO 2010a, SAFE documents, viewed 29 July 2010,

Wright, H. R. 2007, Trachoma in Australia: an evaluation of the SAFE strategy and the barriers to its implementation, Doctor of Philosophy thesis, University of Melbourne, viewed 27 May 2010,

Wronski, I. & Smallwood, G. 1991, Aboriginal and Torres Strait Islander Health Goals and Targets (interim), Commonwealth Department of Health, Housing and Community Services, Canberra.

Yorston, D., Mabey, D., Hatt, S.R. & Burton, M. 2006, ‘Interventions for trachoma trichiasis’, Cochrane Database of Systematic Reviews, Issue 3, Art. No.: CD004008. DOI: 10.1002/14651858.CD004008.pub2., viewed 29 July 2010,

102 Appendixes

10.0 APPENDIXES

Appendix A Advisory groups to AHMAC, AHMC, and COAG

Appendix B Informed-consent form for participants

Appendix C Information sheet for participants

Appendix D Questionnaire for participants

Appendix E Location of the rst community-controlled Aboriginal Medical Service in Australia

Appendix F Professor Archie Cochrane and the NTEHP

Appendix G Medical Specialist Service Delivery to Rural and Remote Australian Communities: A Demonstration Project (Brian 1997)

Appendix H Recommendations of the Eye Health in Aboriginal and Torres Strait Islander Communities Report (Taylor 1997, pp. 1-9)

Appendix I The Regional Model of Public-Private Eye Service Delivery (Brian 1998, pp. 7-12)

Appendix J Recommendations of the Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program Report (Taylor et al 2004, pp. xviii-xxvii)

Appendix K The Visiting Optometrists Scheme (VOS)

Appendix L The Medical Specialist Outreach Assistance Program (MSOAP)

Appendix M Bibliography of Indigenous Eye Health

103 Appendixes Appendix A 104

10.01 Appendix A Advisory groups to AHMAC, AHMC and COAG *

* Diagram provided by OATSIH, May 2010. Appendix B

Informed- consent form from participants

CONFIDENTIAL

The University of Melbourne Melbourne School of Population Health Indigenous Eye Health Unit

Research Project Title: A Critical History of Indigenous Eye Health Policy: Towards Eective System Reform

Research Team: Professor Ian Anderson, Professor Hugh Taylor, Jilpia Nappaljari Jones and Graham Henderson

INFORMED-CONSENT FORM FOR PARTICIPANTS

I understand that this project is for research purposes only ……...... ………. YES (please circle)

I understand that my involvement in the project is voluntary, that I am free to withdraw at any time, and that I am free to withdraw any unprocessed identi able information previously supplied ………………………………………..………………………….….. YES (please circle)

I understand that I will be interviewed for this project, that the interview may take up to one hour to complete, and that the interview will not be audio or video-taped ………………..……………..…… YES (please circle)

I understand that unless I give written approval to the contrary, my privacy and con dentiality will be maintained, and that my identity will only appear on this consent form which will be held in a secure place at the University of Melbourne accessible only by the Principal Researchers until destroyed 5 years after completion of the research project …………………………..….. YES (please circle)

I understan d that my completed interview questionnaire document will only have a Research Participant Number on it and not my name, that it will be retained by the Research Team and stored in a secure place separate from my signed informed-consent form at the University of Melbourne accessible only by the Research Team until destroyed 5 years after completion of the research project ………………………………... YES (please circle)

I understand that there are legal limitations to data con dentiality, for example, the data may be subject to subpoena or freedom of information request …………………………………….…………………..…. YES (please circle)

I understand that the sample size of participants in this project is small which may have implications for protecting your identity …………..… YES (please circle)

Having read and understood the above points, I hereby agree to participate in this research project.

Name of participant: ………………………………………… (Please print clearly)

Signature of participant: …………………………………….. Date: ………………………… Research Participant Number

105 Appendix C

Information sheet for participants

FORM 1 THE UNIVERSITY OF MELBOURNE HUMAN RESEARCH ETHICS COMMITTEE

APPLICATION FOR APPROVAL OF A PROJECT INVOLVING HUMAN PARTICIPANTS

Registration No. (oce use only)

This application form is to be used by researchers seeking human ethics approval for individual projects and studies. The original and 14 copies of your completed application should be submitted to Human Research Ethics, Melbourne Research O ce, Level 5, 161 Barry St Carlton by the due date. Please respond to all sections as applicable and provide attachments where indicated.

RESEARCH MUST NOT COMMENCE UNTIL WRITTEN APPROVAL HAS BEEN RECEIVED FROM THE ETHICS COMMITTEE.

MODULE 1 – CORE MODULE (must be completed for all projects)

0.1 PROJECT TITLE: Critical History of Indigenous Eye Health Policy: Towards Eective System Reform

0.2 THIS PROJECT IS: X Sta Research Project Clinical Trial CTN CTX Other (tick as many as apply) Student Research Project (tick the relevant course type) Project Involving Patients PhD Honours Practical Class Other Doctorate Postgraduate Funded Consultancy Diploma Masters by Research AMS Student Project Other - Please Describe: Masters by Coursework

0.3 PRINCIPAL RESEARCHER(S): [This includes supervisors and co-supervisors of student projects. PhD and Doctoral students can be listed as Principal Researchers along with their supervisors. The rst listed Principal Researcher takes overall responsibility for this research project and is the contact point regarding this application]

TITLE SURNAME FIRST NAME PHONE EMAIL Professo Anderson Ian 0407227825 [email protected] r Professo rolyaT hguH 0239443830 [email protected] r

0.4 OTHER RESEARCHERS

TITLE SURNAME FIRST NAME PHONE EMAIL Ms Nappaljari Jones Jilpia 02 62498446 [email protected] Mr Henderson Graham 02 62496629 [email protected]

0.5 FACULTY/DEPARTMENT/SCHOOL/CENTRE [The Unit which takes overall responsibility for this research project

Faculty of Medicine, Dentistry and Health Science/Melbourne School of Population Health/Indigenous Eye Health Unit

106 Appendix C (continued)

1. PROJECT DETAILS

1.1 PROPOSED DURATION OF THE WHOLE RESEARCH PROJECT From: July 1 2009 To: December 31 2009

1.2 PROPOSED DURATION FOR THE DATA COLLECTION PHASE OF From: October 1 To: November 30 THE RESEARCH PROJECT 2009 2009

1.3 EXECUTIVE SUMMARY IN PLAIN ENGLISH: Provide a brief summary of the project outlining the broad aims, background, key questions, research design/approach, the participants in the study and what they will be asked to do, and the importance or relevance of the project. [This description must be in everyday language, free from jargon, technical terms or discipline- speci c phrases. (No more than 300 words).]

Broad Aim: To document a critical history of Indigenous eye health policymaking in Australia from the National Trachoma and Eye Health Program (NTEHP) in the late 1970s to the present time to assist eective system reform in Indigenous eye health in the context of the Close the Gap policy environment of the Commonwealth Government and the Council of Australian Governments (COAG).

Background: The NTEHP was instrumental in jolting an apathetic Australian population and their politicians towards putting poor Indigenous health at the forefront of health policymaking by Australian governments. Much progress has been made since that time. However many Indigenous Australians still suer unacceptable and inequitable health outcomes compared to other Australians. Much past policymaking and implementation by Australian governments appears to have been ad hoc, under-funded, often compartmentalised, uncoordinated, and not based on clear evidence. This research will extract critical elements of past policymaking in eye health and provide recommendations towards eective system reform.

Key Questions: 1. What are the key Indigenous eye health reports and policies and their timelines from the NTEHP to the current time? 2. What was the wider context of health in Australia during this period? 3. Who were the key decision makers and organisations inuencing Indigenous eye health policies and programs during this period? 4. What factors and circumstances inuenced the actions of these key decision makers? 5. How can an understanding of questions 1-4 inform recommendations for eective system reform.

Research Design: A qualitative study based on a search of the literature and face-to-face interviews with a purposive sample of people involved in Indigenous health policymaking since the NTEHP.

Participants in the Study: Ten people identi ed as key decision makers in the Indigenous eye health policymaking process since the NTEHP.

What the participants will be asked to do: To participate in a face-to-face interview questionnaire.

Importance/Relevance of the Project: This project, together with the other projects in the Indigenous Eye Health Unit Research Program of the University of Melbourne, will contribute towards eective system reform of Indigenous eye health in Australia.

1.4 AIMS OF AND JUSTIFICATION FOR THE RESEARCH: State the aims and signi cance of the project. Where relevant, state the speci c hypothesis to be tested. Also provide a brief description of current research/litera ture review, a justi cation as to why this research should proceed and an explanation of any expected bene ts to the community. [No more than 500 words]

107 Appendix C (continued)

Aims of project: To: 1. Describe the development of Indigenous eye programs and policy from the NTEHP forward; 2. Identify the key barriers and facilitators to effective policy and program development; and 3. Identify strategies for future systems reform in this eld.

Signi cance of project: The NTEHP, a vertical (condition focussed) program, was instrumental in raising broad public and political awareness of the poor health and living conditions of Indigenous Australians in the 1970s, and in particular, their poor eye health1. Various key reports, programs and policies on eye health followed on from the NTEHP2,3. New systems of Indigenous health care delivery developed, such as Community Controlled Aboriginal Health Services4. The Fred Hollows Foundation was established5. The National Strategic Framework for Aboriginal and Torres Strait Islander Health was developed6. However, trachoma remains endemic in many Indigenous communities in Australia7. This project will explore the policy environment during this period of change, and help pull together lessons learned for implementation of eective system reform.

Speci c hypothesis tested: Not applicable

Description of current research/literature review: Indigenous eye health policy provides a critical insight more broadly into some of the key policy debates in Indigenous health policy, including vertical (condition focussed) program development compared with other models of primary health care development, community control in Aboriginal health, health care nancing and systems development. Many of the key players in the 30 year history of eye health programs development in Indigenous health are still alive and could participate in this study which will use a mix of oral history and archival research methods. There is very little published literature about the historical development of Indigenous eye health policy from the time of the NTEHP to the present time.

Justi cation for the project to proceed: Indigenous eye health, as for overall Indigenous health, requires concerted action by policymakers and program implementation players to achieve sustainable improvements to ‘Close The Gap’ by system reform where required. This project can contribute signi cantly to this reform, especially before the key players to be interviewed leave the scene, and should therefore be allowed to proceed.

Explanation of expected bene ts to the community: The expected short to medium bene ts may include improved eye health programs at the community level, and in the medium to longer term improved eye health outcomes, including the eradication of trachoma in Indigenous communities where it exists today.

References: 1. RACO (Royal Australian College of Ophthalmologists) 1980, The National Trachoma and Eye Health Program of the Royal Australian College of Ophthalmologists, RACO, Sydney.

2. NAIHO (National Aboriginal and Islander Health Organisation) 1985, Trachoma and Eye Health Report, Australian Government Publishing Service, Canberra.

3. Taylor, H. 1997, Eye Health in Aboriginal and Torres Strait Islander Communities, Commonwealth Department of Health and Family Services, Canberra.

4. NACCHO (National Aboriginal Community Controlled Health Organisation). Available at < http://www.naccho.org.au/> Accessed 17 August 2009.

5. The Fred Hollows Foundation. Available at Accessed 17 August 2009.

108 Appendix C (continued)

6. National Aboriginal and Torres Strait Islander Health Council (NATSIHC) 2004, National Strategic Framework for Aboriginal and Torres Strait Islander Health , NATSIHC, Canberra. Available at: http://www.health.gov.au/internet/main/publishing.nsf/Content/health-oatsih-imp2 Accessed 17 August 2009.

7. Taylor, H. 2008, Trachoma: A blinding scourge from the bronze age to the twenty- rst century, Centre for Eye Research Australia, East Melbourne.

1.5 METHOD Provide an outline of the proposed method, including details of the recruitment strategy and data collection techniques, the tasks participants will be asked to do, the estimated time commitment involved, and how data will be analysed. [No more than 500 words]

Outline of methods: These include a search and critical reading of key policy-related documents, face-to-face interviews with key informants, analysis of the ndings of these two complementary research approaches, and incorporation of the ndings into a nal report with recommendations for eective system reform.

Recruitment strategy: The informants for the face-to-face interviews will be selected speci cally (purposive sampling)1 by the Principal Researchers based on their many years of direct experience and knowledge of Indigenous eye health and the policymaking process in Indigenous health.

Data collection techniques: The search and critical reading of key policy-related documents will follow standard methods2. The face-to-face interviews with key informants will follow best practice3,4. A speci c questionnaire has been designed by the Research Team to elicit useful rst-hand information from the interviewees considered important for this project. A copy of the project questionnaire is attached.

Tasks participants will be asked to do: The only task the participants will be required to do is participate in the face-to-face interview.

Estimated time commitment involved: We expect the interviews to take a maximum of 60 minutes to complete. The participants will sign an informed consent form before their interview. The con dentiality and privacy of the interviewees will be protected by the Research Team, although some or all participants (all senior and highly experienced professionals) may wish to be identi ed.

Data analysis: The interview data will be analysed by grouping the ndings into common themes (e.g. roles in policy development, policy processes, evidence and resources, implementation) and developing a critique from these themes and the ndings of the literature review towards the aims of this project.

References: 1. Scho eld, M. and Jamieson, M. 1999, ‘Sampling in quantitative research’, Chapter 8 pp.158-159, In Handbook for research methods in health sciences, Edited by Minichiello, V., Sullivan, G., Greenwood, K. and Axford, R., Addison Wesley, Sydney.

2. Kumar, R. 2005, Research Methodology: A step-by-step guide for beginners, 2nd Edition, p. 29, Pearson Education Australia, Sydney.

3. Armstrong, B., White, E. and Saracci, R. 1992, ‘The personal interview’, Chapter 7 pp. 171-196, In Principles of Exposure Measurement in Epidemiology, Oxford University Press, Oxford.

4. Minichiello, V., Madison, J., Hays, T., Courtney, M. and St John, W. 1999, ‘Qualitative interviews’, Chapter 18 pp. 396-418, In Handbook for research methods in health sciences, Edited by Minichiello, V., Sullivan, G., Greenwood, K. and Axford, R., Addison Wesley, Sydney.

109 Appendix D

Questionnaire for participants

CONFIDENTIAL

The UoM Indigenous Eye Health Policy History Project

Research Interview Questionnaire

Research Participant Number

Part A (General questions)

1. Sex: ………….. Age: …….…. (years)

2. What was your role/position doing your period of involvement in Indigenous (eye) health?:

3. What organisation did you work for during this period?: ……...………………......

4. What length of time were you in this role?: …………………..…………...……….

5. Were you involved at the Federal or State/Territory level?: ……………………….

Part B (Speci c questions)

Your Role in Policy Development

6. What was your involvement in the development of Indigenous Health Policies, and in particular eye health policies, during your involvement with Indigenous Health?

7. What were the speci c policies?

8. How important was Indigenous eye health to you at the time?

9. What shaped your thinking about the relative priority of Indigenous eye health?

10. Did your thinking rdie from that of other key stakeholders?

Policy Processes in Indigenous Eye Health

11. Tell us about the general health policies operating at your time that guided or drove the formation of Indigenous eye health policies?

110 Appendix D (continued)

CONFIDENTIAL

12. Where did the policies ‘come from’ and who drove the policy making process?

13. Were Indigenous people involved (through consultation, discussion, negotiation) in the development of the policies you were involved with? How and what way?

14. Did you respond to feedback from Indigenous communities about their concerns/views with any eye health policies that you were involved with?

15. What was the relationship between Federal, State, and Territory Indigenous policy makers during your involvement?

16. Were there any other factors which shaped the priority attached to Indigenous eye health within the policy process? What were the barriers and enablers, including to development and implementation of the policies?

Evidence and Resources

17. What was the role of evidence in the policy making process in relation to eye health? Can you give any examples?

18. What resources did you have available for your work?

19. Were resources an issue that impacted on the policy development process?

Implementation Issues

20. Were the policies you were involved with implemented? Can you tell us a bit about this?

21. Were the policies successfully implemented? How do you know this? Was there an evaluation?

22. When did the eye health policies you were involved with nish/change and why?

Othero P ssible Issues

23. What was the role played by Community Controlled Health Services in the development and implementation of Indigenous eye health policies? Do you believe they were eective and why?

24. Do you have any other comments you would like to make?

111 Appendix E

Location of the rst community controlled Aboriginal Medical Service in Australia

© Jilpia Nappaljari Jones

This photograph was taken in September 2004 and shows the location at 147 Regent Street Redfern where the rst community controlled Aboriginal Medical Service in Australia was opened in June 1971in Sydney, and operated as a two-room shopfront medical clinic until 1977 when the service moved to the nearby location of the current Abo riginal Medical Service at 36 Turner Street Redfern, viewed 2 July 2010,

Foley (1982 p. 14) wrote:

In 1970 in Sydney, the largest single Aboriginal community in Australia, an Aboriginal person who found that they needed medical treatment had two basic options. These were: 1. to visit a local general practitioner, or 2. visit the outpatients department of a public hospital. The rst was almost an absolute impossibility because most GP’s in Sydney insisted on cash before they would treat Aboriginal patients. At the time 98% of all Aborigines in Australia lived well below the ocial poverty line. The second was almost as traumatic and degrading, because the overtly racist treatment of Aborigines in all the local hospitals absolutely discouraged Aborigines from attending in all but the most serious or emergency situations.

With the assistance of Hollows and a few other non racist white doctors, the Aborigina l community of Sydney was soon (1971) able to open the doors of the rst community controlled Aboriginal Medical Service (AMS) in Australia. Initially, the Service operated as a shopfront Medical Centre using volunteer doctors on a roster basis, but within 12 months the patient demand far exceeded the ability to cope, and the Federal Government was forced to realise that a need existed and thus Government funding became available.

Ms Naomi Mayers was appointed coordinator of the Service in 1972 (Foley 1991, p. 5), and remains CEO of Redfern Aboriginal Medical Service to this day, a magni cent achievement of service.

112 Appendix F

Professor Archie Cochrane and the NTEHP

© Reginald Murray

The picture shows Mr Colin Pound and Professor Archibald Cochrane standing in Zone 1 Red Centre152 west of Uluru in central Australia in mid 1976 during the early stages of the NTEHP. The picture was kindly provided by Mr Reginald Murray who was an important member of the NTEHP team.

Professor Cochrane was the David Davies Professor of Tuberculosis and Chest Diseases in the Welsh National School of Medicine, and Director of the Medical Research Council Epidemiology Research Unit in Cardi when he rst met (circa 1963) Dr Fred Hollows who was then a senior registrar at the Cardi Royal In rmary (Cochrane & Blythe 1989, pp. 197-202; Hollows & Corris 1997 pp. 71-81; TCC 2010). Hollows and colleagues in the summer of 1963 conducted a study of the prevalence of raised intra-ocular pressures in 4,231 persons aged 40-75 years living in 3 mining villages of Rhondda Fach153 in South Wales. A number of papers on detecting glaucoma, sources of variation in tonometry and the prevalence of glaucoma resulted from this work (Graham & Hollows 1964; Graham & Hollows 1966; Hollows & Graham 1966a,b), and Hollows used the experience from this epidemiological work in Wales under the guidance of Professor Cochrane to great eect in the NTEHP he lead some years later in Australia (RACO 1980).

Both Cochrane and Hollows later completed their autobiographies (with assistance from colleagues), and reected on their experiences of this period in their professional lives (Cochrane & Blythe 1989, pp. 197-202; Hollows & Corris 1997, pp. 71-81). Two quotations from these memoirs provide a ‘avour’ of their reminiscences:

Whatever the outcome of the glaucoma survey I came out of it bitten with the idea of ophthalmological epidemiology. The methods of ophthalmologists seemed so beautifully quantitative, and there seemed so much that might be gained by the study of the aetiology and possible prevention of cataract and glaucoma. (On one occasion I pointed out, rather cynically, that the reason why so little work had been done on the prevention of these two diseases was the fact that they were both to some extent treatable, as well as being responsible for a high proportion of ophthalmological incomes.) (Cochrane & Blythe 1989, p. 201).

152 See RACO (1980, pp. 5, 16) for maps of the location and movement of NTEHP eld teams. 153 Thomas (1999) provides a short summary of important medical research in the areas of lung disease, hypertension, anaemia, glaucoma and screening conducted in the Rhondda valleys of South Wales over a period 60 years.

113 Appendix F Appendix F (continued)

The work gave me an academic reputation. That’s one thing. More importantly, maybe, it con rmed me in some attitudes I already held. If I’d been in Boston in the 1770s and the cry ‘No taxation without representation’ had gone up, I’d have been at the fucking barricades. The credo of this survey was ‘No survey without service’ – same sort of thing. Careful recording of results, humane and considerate treatment of the people, and action on the problems disclosed. Without my exposure to that approach in Wales, the trachoma project wouldn’t have achieved what it did. (Hollows & Corris 1997, p. 78).

Some years after Hollows returned to Australia, Cochrane wrote an inuential book entitled ‘Eectiveness and Eciency: Random reections on health services’ during a Rock Carling Fellowship in 1971 that was published by The Nueld Provincial Hospitals Trust (Cochrane 1972). This book was dedicated to four individuals and the population of the Rhondda Fach, and in the context of discussing clinical and epidemiological interpretations of distributions of quantitative biological characteristics, he referred to an alternative approach to ‘normal limits’ where the object should be to establish the point or points on the distribution at which therapy begins to do more good than harm (Cochrane 1972, pp. 41-43), and included as one example of several154, the work by Graham on intra-ocular pressure (Graham 1968). Cochrane discussed the ‘care’ and ‘cure’ sectors, ‘ination’ in the ‘cure’ sector at that time, and rehabilitation of the ‘care’ services through a marked increase in knowledge through applied medical research, particularly using the technique of Randomised Controlled Trials (RCT) (Cochrane 1972, pp. 78-85). Cochrane’s work led later to a world-wide focus on eviden ce-based medicine, and the establishment of The Cochrane Collaboration in his honour (TCC 2010).

The lessons from Wales can be clearly seen in the methodology chapter in the NTEHP report (RACO 1980, pp. 9-23). For example, the program’s 9 screening principles:

1. The teams should be able to provide a range of ophthalmic diagnostic and therapeutic services to everyone, and these should be of the highest standard.

2. Services should be given immediately in order to minimise drop-out from medical care and surveillance, to encourage the use of future services, and to show that specialist care need not be complicated.

3. The services should be available and accessible to all.

4. The teams and their equipment should be mobile in order to provide the services in locations convenient to the target populations.

5. The teams should at all times work closely with the Aboriginal communities through liaison ocers engaged from the communities for this purpose, to ensure that the service is suitable to the needs of the community, that the community is willing to use the service, and to advise teams on how to give the best possible service.

6. The team should use Aboriginal sta to the fullest: employing them in preference to similarly quali ed Europeans; consolidating existing skills; helping them acquire new ones; lessening cultural barriers between teams and clients.

7. The teams should at all times encourage, inform, support and work with any person, group or agency as a move toward mobilising the community’s interest in its own health.

8. The rst contact with the communities should be the rst step in establishing on-going eye care.

154 These were haemoglobin levels, blood sugar levels, and arterial blood pressure (Cochrane 1972, pp. 41-43).

114 Appendix F (continued)

9. The team should note any factors within the community’s environment which could be deleterious to the health of its members, and should advise the appropriate authorities, in consultation with the communities, on how to rectify them.

Screening principle 5 is clearly evident in the NTEHP Liaison Report by Mr Trevor Buzzacott (RACO 1980, pp. 10-13), another important member of the NTEHP team. A copy of his report is shown below.

Liaison Report by Trevor Buzzacott (RACO 1980, pp. 10-13):

Australian aboriginal society has a structure – one with which most Australians are not familiar and will not become familiar in their lifetimes. The lack of familiarity with Aboriginal society, its history and its culture, has made it dicult for non-aboriginal Australians to identify and help deal with the problems faced by Aboriginal communities. The National Trachoma and Eye Health Program provided a successful service to rural and country-urban areas of Australia where the greatest proportion of Aborigines live. It identi ed areas of high trachoma prevalence, and high prevalences of other diseases; provided spectacles, treatment and surgery programs; and, in dierent locations, assisted local health agents to handle their communities’ own health problems within their communities’ structures. The program worked in a critical area where change had to occur. The program’s success in meeting its aims and objectives as due to a number of reasons, among which were:

1. The program’s teams sought to identify and deal with the problems being faced by communities in the areas where the problems were: in hot, dusty climates with poor living conditions, often geographically remote and with irregular, if any, professional eye-care services being available. 2. The examinations were simple and easily understood by the communities, and involved participation by all eld sta and the Aboriginal people. 3. There was considerable participation by Aboriginal people as liaison ocers and eld workers in all communities. 4. Consultations with communities, local people and dierent organisations were done by Aboriginal sta. 5. The program’s advance eldwork ensured that all A boriginal communities were informed of the teams’ visits well in advance, knew of the teams’ aims and objectives, and ensured that informed permission was obtained from the community before the program began providing services. 6. The eld teams identi ed with, and became very much part of, the communities they visited even when there were only short stays. Because of the program’s independence for camping and c ooking facilities, visits did not provide a burden on local facilities; a clinic was provided when one was not available; sta were prepared to work endlessly in providing a service to the people. Field team members also made a point of learning basic phrases in the local Aboriginal language such as ‘hello’, ‘good morning’, ‘come closer’, ‘turn your head’, ‘look up’, and so on, many of which were essential in providing a complete eye examination.

All these factors helped break down communication barriers, and enabled the program to examine person who were relaxed, with only a few fears. Because of past experiences with medical services, including eye examinations, treatment and surgery, many Aboriginal people were afraid of being examined. In many cases they did not have the information from which they could decide about issues such as eye surgery, or treatment for follicular trachoma in children.

Consultation and communication was the most important factor in the program’s success in reaching into Aboriginal communities. Through its liaison and consultation eorts, the program sought to involve people from the communities in its decision-making, and to show them its willingness to participate in movements for improved health, and its commitment to the communities among whom it was working. Unless the community was aware of, and approved of what the program was doing, co-operation was not total, the best results would not be obtained, and the screening program would be regarded as merely another useless survey. The program thought it common courtesy to inform people of its aims and objectives: these concerned old people, children, their parents, their homes, their lands and their lives.

115

Appendix F (continued)

Each community the program visited had to be treated individually. Dierent groups spoke dierent languages; housing and lifestyle were frequently radically dierent; many communities were physically isolated from other centres. Within the communities there would be dierent authority structures, and diering input and control from outside agencies, including the Department of Aboriginal Aairs, other governmen t departments, local non-Aboriginal resource personnel, and various religious institutions. All these factors had a strong bearing on how contact was made with each community. In some cases the hostility of some outside agencies meant that special eorts had to be made to reach the Aboriginal community itself.

On other occasions, the teams’ movements were inuences by factors such as Aboriginal ceremoni es, deaths within the community, link-ups with other surveys, and the movements of populations according to a number of factors. These have to be taken into account in planning screening or follow-up visits.

Usually, initial contact would be made with communities a month or more before the arrival of eld teams. This contact would be made by correspondence, inclosing information about the program and its objectives. An Aboriginal liaison ocer would visit soon afterwards.

This rst contact attempted to properly inform the local population of the aims and activities of the program. This included talking to senior persons in the authority structures of the communities, and such other people as community advisers, health and teaching sta and interested people working in the community.

Discussion and consultation was time-con suming. In most cases, Aboriginal people wanted to discuss issues among themselves and then return with answers and questions. It was necessary to clarify exactly what the eye-care service entailed, with a complete explanation of all aspects of the examination, and the likely follow up with surgery and treatment if this was necessary.

Through such discussion and consultation, the program sought to involve the people from the communities, and to make them committed to its success. This ranged from obtaining the help of local people in the conduct of the screenings, the use of local interpreters and translators, and obtaining as wide a coverage of the community as possible. To achieve the latter, program teams were prepared to make camp visits and conduct clinics in dierent places. The nature of follow-up, including providing spectacles and making arrangements for surgery and treatment programs, would be explained where necessary so that the communities would know what to expect and would be able to have an input into continuing programs for eye health card in the communities.

After the initial contacts were made, information would be relayed to the eld co-ordinator about the size and nature of the community, appropriate persons with whom to dea l, the names of persons who would assist the eld teams, the location of clinics and other facilities, and the community’s wishes about the way in which the program should operate.

An itinerary would then be drawn up. The program, being independent for facilities and carrying all the equipment for complete ophthalmological examinations, was exible and operated according to often quickly changing conditions. Thi s was in spite of enormous diculties of time, distance, poor communications, and a lack of well-formed roads, with some communities being accessible only by air or sea. Despite these diculties, with luggage and cargo kept to a minimum, and long and exhausting hours for eld team members, the program kept to its schedules without reducing its service.

Once eld teams were placed in Aboriginal communities, the same process of communication and consultation was necessary, using the contact and information obtained in earlier liaison work. Local people worked with eld team members in achieving the program’s objectives. The program’s ndings and their implications for the community would be discussed with the community; the program always left a complete

116 Appendix F (continued)

set of its ndings, and an interim report summarising the picture in the whole community. Health workers and other interested people were instructed in the recognition and treatment of trachoma and other eye conditions.

Once a screening team had left an area, it was essential to maintain links with the community to ensure the necessary follow-up was achieved, and to assist the community in dealing with the problems seen by the program.

The success of the program’s activities in one community would considerable assist in working with other communities in the same area: Aboriginal contacts were the key links in securing this.

The network of the Aboriginal people was the best avenue for liaison and communication. Aboriginal elders, wati ngunkaris (Aboriginal doctors), aboriginal health workers, and Aborigines working with dier ent agencies or departments within the community, were highly respected people and were able to secure the involvement and co-operation of people within the community.

It was within this network that the National Trachoma and Eye Health Program worked and this was appreciated and understood by the communities. The program’s continued contact and empathy with this network enabled it to be made aware of changes which had t aken place, which meant that adjustments to schedules or ways of operating could take place without causing great diculties. The ‘grapevine’ communication was able to get information very rapidly even to the most remote areas.

Working within this network meant that the program was able to leave some aspects of necessary follow-up with local or regional Aboriginal organisations, and to give these organisations support and assistance in meeting their own aims and objectives, almost invariably inherent in the program’s own.

The empathy and support the program obtained from Aboriginal communities throughout Australia was not given without a price. It was secured on a clear understanding that the organisers of the program were genuine, and that the program’s activities provided a starting point for improved health services in the future.

There is still an enormous need to consolidate the gains made by the program – and in dealing with trachoma and other eye diseases, in providing specialised eye health-care services to the largely neglected areas of rural Australia, and in outlining some of the changes necessary if Aboriginal health is to improve.

Aboriginal people who co-operated with, and supported the activities of the program, did so on the basis that this consolidation and follow-up would take place. If it does not the gains made by the program will prove short-term, and the empathy and support of Aboriginal communities will be lost.

More than 500 local liaison sta and more than 200 Aboriginal health workers were employed during the course of the NTEHP screening and treatment programs, and up to 50 other people were employed concurrently at various stages in the NTEHP, including Aboriginal liaison ocers, ophthalmologists, orthoptists, optical dispensers, microbiologists, nurses, and clerical sta (RACO 1980, p. 8).

117 Appendix G

Medical Specialist Service Delivery to Rural and Remote Australian Communities: A Demonstration Project (Brian 1997)*

* A scanned copy of this report was provided to the authors by The Fred Hollows Foundation in June 2010.

118 Appendix G (continued)

119 Appendix G (continued)

120 Appendix G (continued)

121 Appendix G (continued)

122 Appendix G (continued)

123 Appendix G (continued)

124 Appendix G (continued)

125 Appendix G (continued)

126 Appendix G (continued)

127 Appendix G (continued)

128 Appendix G (continued)

129 Appendix G (continued)

130 Appendix G (continued)

131 Appendix G (continued)

132 Appendix G (continued)

133 Appendix G (continued)

134 Appendix G (continued)

135 Appendix G (continued)

136 Appendix G (continued)

137 Appendix G (continued)

138 Appendix G (continued)

139 Appendix G (continued)

140 Appendix G (continued)

141 Appendix G (continued)

142

Appendix H

Recommendations of the Eye Health in Aboriginal and Torres Strait Islander Communities Report (Taylor 1997, pp. 1-9)

Recommendation 1 The Commonwealth Government should commission an appropriate group to develop evidence-based, clinical practice guidelines for primary eye care for Aboriginal and Torres Strait Islander peoples. These guidelines should be developed in consultation with the relevant health professions especially those working in Aboriginal Medical Services. Appropriate in-service training modules should be developed around these guidelines for all those working in the primary health care setting. These should be provided to the National Information Network for wide distribution.

Recommendation 2 The Commonwealth and State and Territory Governments should provide nancial incentives for health services to purchase and use computer-based, patient management and recall systems. Training must be provided to these organisations to assist in integrating these systems into work of the service. The Commonwealth and State/Territory Governments should develop performance information and minimum data reporting requirements for eye health that can then be generated by the patient management and recall systems.

Recommendation 3 3a. Eye services should be delivered through a regional public-private model. The provision of these services is the joint responsibility of the Commonwealth and State and Territory Governments. Where possible outpatient services should be delivered through Aboriginal Medical Services.

3b. The proposed funding method for the regional model is for the Commonwealth Government to:

* continue to allow Medicare bulkbilling for specialist eye services; and

* make available Commonwealth funding, through Medicare or another mechanism to cover the surgeon’s involvement in cataract and other eye surgery performed in public facilities in remote regions.

State and Territory Governments are to provide funds for the overhead-free environment required for the provision of the above services. This would include, among other things, equipment, infrastructure, travel and support.

3c. Regional and local health care services must identify a person, preferably an Aboriginal person, to be responsible for the administration and community liaison for the specialist eye services. Hospitals should be resourced to provide Aboriginal Health Workers with liaison responsibilities to assist Aboriginal patients undergoing surgery.

3d. Links should be established between primary health care services in urban areas and optometrists, ophthalmologists and hospitals that provide eye services so that primary health care services can readily refer their patients for appropriate eye care.

3e. The Commonwealth and State and Territory Governments must ensure that cross-border funding issues are addressed at a local level so that the quality of care is not jeopardised for patients who may be referred from centres in other States.

Recommendation 4 Evidence-based, clinical practice guidelines for the provision of specialist eye care to Aboriginal and Torres Strait Islander patients should be developed in consultation with the Royal Australian College of Ophthalmologists and other relevant bodies. The guidelines should include cataract surgery, trachoma and diabetic retinopathy. These should be provided to the National Information Network for wide distribution.

143

Appendix H Appendix H (continued)

Recommendation 5 State and Territory Governments and the Royal Australian College of Ophthalmologists should develop registrar training positions with appropriate supervision in rural and remote areas. The Royal Australian College of Ophthalmologists should encourage registrars to accompany ophthalmologists during visits to rural and remote regions and facilitate this.

Recommendation 6 Health services should ensure the availability of ready-made reading glasses through local outlets or through the health service.

Recommendation 7 The Commonwealth Government should review the eectiveness of the visiting optometrist scheme in meeting the needs of Aboriginal and Torres Strait Islander communities particularly in remote areas.

Recommendation 8 State and Territory Governments should review their low-cost spectacle schemes to improve their accessibility and utilisation by eligible Aboriginal and Torres Strait Islander peoples.

Recommendation 9 Cataract surgery should be routinely provided at a regional level and requires appropriate facilities and equipment.

Recommendation 10 The State and Territory Governments should provide regionally-based equipment such as non-mydriatic fundus cameras and portable laser equipment necessary for the management of diabetic retinopathy. Appropriate training should be made available to primary health care workers who will use the photographic equipment.

Recommendation 11 Clinical practice guidelines for diabetic retinopathy should include at a minimum, the use of patient management and recall software, the importance of annual eye examinations and advice on the use of laser treatment in Aboriginal and Torres Strait Islander communities.

Recommendation 12 12a. A Medicare item number should be provided for annual retinal photographic screening for retinopathy in people with diabetes by practitioners other than ophthalmologists and optometrists.

12b. Aboriginal Health Workers or nurses should be able to provide annual retinal photographic screening for retinopathy in people with diabetes under the supervision of a medical practitioner, in keeping with the ‘On behalf’ provisions, and thereby attract a Medicare rebate under the supervising medical practitioner’s name.

144 Appendix H (continued)

Recommendation 13 Clinical practice guidelines for trachoma should be developed for Aboriginal and Torres Strait Islander peoples based on the WHO guidelines and in consultation with the relevant health professionals including those working in Aboriginal Medical Services. They should include at a minimum, the screening for trachoma, the WHO simpli ed grading, the surgical treatment of trichiasis, the family-based treatment with azithromycin, the promotion of facial cleanliness and environmental improvement.

Recommendation 14 12a. As a matter of urgency, the Therapeutic Goods Administration should put to the Pharmaceutical Bene ts Advisory Committee the issue of scheduling azithromycin under the Pharmaceutical Bene ts Scheme for the treatment of trachoma, including the use of a paediatric suspension for infants.

12b. The Commonwealth Minister for Health and Family Services should authorise funding under Section 100 of the National Health Act or through some other mechanism, the distribution of azithromycin through alternative arrangements that substitute for doctors and community pharmacists.

Recommendation 15 The three tiers of government must make concerted and sustained improvements in housing, water supply, waste disposal and other important aspects of the environment in Aboriginal and Torres Strait Islander communities that ensure the provision of functional health hardware. Resources should also be allocated and provide for planned maintenance. Attention must focus on the regional delivery of housing and the responsibility of local government to provide infrastructure.

Recommendation 16 The Commonwealth Government should fund the establishment of a National Information Network to undertake the tasks that have been identi ed in this report. The Network would be a low-cost, small-scale organisation, possibly with a secretariat working on contract.

Recommendation 17 The National Information Network should report on a regular basis to Health Ministers on the performance of health providers of eye health care. This report should be based on information gathered by the Network and include, at a minimum, the following performance indicators:

* the number of pairs of glasses provided;

* the number of cataract operations performed;

* the number of people on the waiting list for cataract surgery, and the time that they have been on the waiting list;

* the percentage of people with diabetes who have an annual eye examination;

* the number of people with diabetes for whom treatment was recommended and the number who were actually treated;

* the status of trachoma on a community basis including the prevalence of trachoma in children aged ve to nine years;

* the number of people treated for trachoma with azithromycin; and

* the prevalence of trichiasis in women over 40 years. These performance indicators should be built into the framework of performance indicators being developed through Australian Health Ministers’ Advisory Committee to report on Australia’s national jurisdictional performance in Aboriginal health.

145 Appendix I

The Regional Model of Public-Private Eye Service Delivery (Brian 1998c, pp. 7-12 ) All Australians deserve equity of access to, and opportunity for utilisation of, health services. This is no less so for rural and remote community residents, indigenous or otherwise.

For rural and remote medical specialist service delivery, the innovation is not in the medical

treatments, but in the organising and nancing of the service. Succ essful service delivery must oer the opportunity for legitimate service providers to engage in long term service provision to Australians presently disadvantaged by lack of access or opportunity.

With this in mind, the elements of successful rural and remote service delivery must be that: • The quality of service should be no less than that expected by urban Australians. • The service should be as comprehensive as medically approp riate and possible. However, it may, of necessity, be limited, but should deal well with the more prevalent problems occurring in the target population. • The service should be delivered in or near to communities, improving patient access and increasing uptake. • The service should integrate with existing primary health care services where possible. • The service should act as a conduit into available tertiary medical care as required. • There ought to be training and use of local people as service managers where possible. • A health database ought to be established and used in the evaluation of service performance and medical intervention outcome measures, and in setting the priorities of an ongoing needs-based health service. • There should be coordination of all resources controlled by disparate authorities and organisations, so that the service may be sustained by mainstream funding in the long term. • The service should be able to identify and handle the backlog of diagnostic and therapeutic intervention required, before settling to a sustainable level of activity. • The service should be ongoing, either intermittently or continuously, as determined by population need and resource availability.

In eye health, the specialist service providers are the optometrist and ophthalmologist. Each must be prepared to provide a regular ongoing in-community service in a context not to their nancial and professional detriment. It is important that these medical professionals not view this undertaking as charity work, but that the rural or remote service unit is a constituent of their regular practice. The same standards and commitment would be expected as for other parts of their practice . As part of the professional commitment which is then established, they should be available for telephone advice to other health professionals committed to the locality, and facilitate referral of patients with urgent needs between visits. This is about encouraging specialist service providers interested in rural service to incorporate a community, group of communities, or region into their urban-based medical practice.

From the Far North Queensland experience, a single optometrist repeatedly providing a service in a community means the onus is on him to ensure quality workmanship; appropriate refraction, good manufacturing, prompt delivery, and well tting spectacles. This is what he does in urban practice. Failure to do so will mean poor patronage in future, urban or remote. If there are problems, or replacement spectacles are required, pat ients have a single contact address or telephone number with which to get satisfaction. If this does not occur, the patient has the option of personal contact on a subsequent community visit.

The presence of an optometrist, handling all aspects of refraction and spectacle dispensing, frees the ophthalmologist for the work he is more appropriately trained to deal with.

146 Appendix I (continued)

The ophthalmologist involved must be prepared and able to provide good quality medical intervention in often dicult circumstances. Through repeated visits, prompt surgical intervention, and good surgical outcomes, community trust and willingness to access the service are established. With this build up of practice, the continued participation of the ophthalmologist is encouraged.

The costs in delivering this service may be substantial. However, again from the Far North Queensland experience, compared to the extensive transfer of patients from remote communities to mainstream urban health services, this mode of service delivery is very cost eective.

The costs are such that a practitioner attempting to incorporate regular comprehensive rural and remote service into his practice would nd them prohibitive. This is particularly so, since the specialist practitioner already has the often considerable costs of his metropolitan base practice to meet. It is far more nancially rewarding, and considerably less risky, to concentrate on urban service. This is quite apart for the ease of metropolitan practise, compared to the alternative with its diculties of travel, time away from home and practice, and the sometimes inhospitable conditions of remote Australia and its commun ities.

Therefore, innovative funding arrangements need to be organised to promote rural and remote service delivery. This involves meeting the transport, accommodation, facility, equipment, organisational, and ancillary sta costs of the service. Also, the workload must be such that fee-for- service arrangements produce a sustaining income for the practitioner. Where, because of time spent in travel or paucity of patient load, this does not occur, then supplemental income arrangements need to be negotiated.

The model overcomes the problem of the costs impediment by wedding public and private resources.

The private component comprises the practitioner’s time and skill (both during visits and for telephone advice between), with some practice management (including liaison, supervising waiting lists, coordinating spectacle ordering and delivery to pati ents, etcetera).

In providing this service, the practitioner derives an income on a fee-for-service basis. In many communities, given the disadvantage of the patients accessing this service, the Medicare rebate alone is accepted. And further, because of the diculty for these people in dealing with the Medicare bureaucracy, the service is bulkbilled. Elsewhere, there may be an auent community stratum accessing the service and a dierent arrangement may be used. Thus, every patient, for every intervention, including surgery, is treated as a private patient of the practitioner.

The public component is provided by the Commonwealth-State axis through local, usually medical service or hospital, health budgets. This includes travel of the practitioners to the region and between communities, accommodation, clerical assistance in communities, use of nursing and ancillary sta, and the use and maintenance of facilities and equipment. There will be local variation on how this is arranged. For example, where frequency of practitioner visits and population size and composition do not warrant installing equipment in a community or facility, it would instead be available for movement across several communities and for use by several practitioners. This would increase the cost eectiveness of the equipment investment.

147 Appendix I (continued)

In essence; in return for the practitioner adopting a rural/remote service unit155 into his private practice, government provides a overhead-free work place, with the possibility of supplemental income if required by local circumstance.

In practical terms, regional public-private eye service delivery must primarily meet the requirements of good quality clinical practise in dispensing spectacles, and in monitoring and tre ating cataract, diabetic eye disease, and trachoma where it is problematic. However, provision needs to be made to deal with all optometric and ophthalmic problems, either at presentation or by referral. The aim is to provide as much of the eye service in each community, or as close as possible, at the service unit's hub community.

There may be considerable variation in how this is implemented. Variations will be determined by such factors as practitioner availability, type of health facilities in existence, community size, composition, and location.

So, in some circumstances, in keeping with the need for annual diabetic review, the eye team visits each community at least once per year. In each community, patients are examined and spectacles organised. Those with diabetic retinopathy needing treatment are lasered as required. Diabetics requiring no treatment are invited to return for review the following year. Patients with any ocular condition necessitating earlier or more frequent assessment, including those with signi cant diabetic retinopathy and those lasered, have further appointments made for subsequent ophthalmic visits to the service unit's hub. Each visit to the service unit involves time passing through peripheral communities, oering the annual service. Also, time may be spent at the hub, reviewing local community members, and those patients from peripheral communities identi ed as needing more intense supervision. Thus, there is provision to review any patient as frequently as the service unit hub visits allow.

Elsewhere, a non-mydriatic fundus camera may be used to screen for diabetic retinopathy. This may be done in any of several ways. One is to have a camera resident in every Indigenous Health Service. It could then be used opportunistically to screen any patient who presents at any time for any condition. This would involve a large capital outlay an d the training of many users. Another is to have a single trained Aboriginal/Islander Health Worker, equipped with a camera, travel independently to communities and screen for diabetic eye disease. This has the disadvantage of being disease speci c, ignoring the optometric and other ophthalmic needs of those screened.

Some believe that use of a fundus camera only has application where an eye team does not visit. Others see an advantage in using it where there is a concentration of diabetics. Its use would save the ophthalmologist from examining a large number of normal diabetic eyes, and allow him to concentrate on treating just those identi ed by photography as requiring laser.

For those service regions wishing to try using a fundus camera, there are cost and sta implications. From the Victorian experience, fundal photography costs four dollars per patient. This annual cost will need to be met either through Medicare or by some other mechanism. The training of local sta in use of the camera needs to be organised and take into account recurrent sta turnover.

155 A geographic region may be designated as a Regional Service Area. A Regional Service Area may have one or more Service Units. A Service Unit comprises one or more smaller, less resourced, peripheral communities with a larger, better resourced, hub community, in close proximity, which anchors the service. The hub community may act as such for several Service Units. 148 Appendix I (continued)

Surgery, using regional anaesthesia, should be performed at the hub community's hospital. This will primarily be cataract surgery, but other procedures such as pterygium excision, squint correction, or lid surgery may be done. Patients travel in from their community, stay with relatives, in a hostel, or in a step-down-centre, have their surgery as a day case, and return home after a couple of days.

With the exception of the few patients requiring more sophisticated investigation (for example: CT scan) and treatment (for example: vitreoretinal surgery), and of emergencies occurring when the ophthalmologist is not in the service unit, and which can not be handled by telephone consultation, there is no need to transfer patients to large metropolitan centres.

Where possible, ophthalmic and optometrical services ou ght to be provided by practitioners as part of an eye team. The other two members being an administrator/coordinator and a local health worker (Aboriginal/Islander Health Worker or Indigenous Medical Service nurse). There will be local dierences in the team membership and size. Also, there may be variation as to where these latter two workers are drawn from (hub, periphery, or elsewhere), depending, inter alia, on the size and community composition of the service unit, its relationship with other units, the ease of transporting the team and its equipment, and the availability of suitable community members interested in undertaking these roles. However, the preference ought to be to conduct the eye service from Indigenous Medical Service facilities, using Indigenous Medical Service sta.

The administrator/coordinator's responsibilities may include: • organisation of team visits to communities; - liaison with community health services: prepublicity, generating clinic lists, organising work space, ensuring no clashes with other specialist visits or community events, etcetera. - organisation of team travel and accommodation. - ensuring the (pre-)arrival of necessary equipment in working order.

• running the specialist clinic; - doing or supervising: Medicare enrolments, checking Medicare numbers and expiry dates, and completing Medicare vouchers. - doing or supervising the pulling and use of the host Indigenous Medical Service's medical notes. - collecting service performance and medical outcome data.

• post-visit organisation; - liaison with hub hospital concerning generating surgical waiting and theatre lists. - liaison with hub community Indigenous Medical Service concerning any follow-up appoint ments to be made for peripheral community members. - overseeing arrangements to transport and accommodate patients requiring hub clinic appointments or surgery. - organisation of movement of equipment to the next location at which it will be required. - organisation of equipment maintenance. - collation of data and submission to the National Information Network. - organisation of distribution of spectacles resulting from the visit

149 Appendix I (continued)

• overseeing the use of a fundus camera; - organising the transfer of a fundus camera between communities. - training/supervision of those using the camera in communities. - organising the retrieval of photographs and their examination by an ophthalmologist. - organising appointments for those requiring review or laser treatment.

• addressing miscellaneous issues such as;

- ensuring equity of access for all patients. - acting as a conduit for complaints/compliments from patients, communities, health workers, and practitioners.

Some of these responsibilities will be executed personally by the administrator/coordinator. Others, at a community level, will be performed by a local Indigenous Medical Service sta member (administrator or Aboriginal/Islander Health Worker) under the adm inistinistrator/rator/coordinator's direction.direction.

The team's health worker's responsibilities may include: • during community clinic visits; - measuring visual acuities. - dilating patients' pupils.

Spending time in the waiting room, talking to patients (reassuring about clinic procedures; discussing diabetes and diabetic eye disease; discussing trachoma and other eye diseases; reassuring about surgery and describing how it is delivered in that service unit; describing the mechanism of dispensing spectacles and their procuremeurementnt free through a spectacle scheme or for payment; etcetera)

• acting as a liaison person at the time of surgery (this worker will already know oror have met the patient at the clinic, may accompany or meet the patient at the hub hospital, be present during surgery if required, and oversee the immediate and perhaps home community postoperative care).

In some service units, the optometricaltom etrical neeneedd may require more frequent community visits than the ophthalmic component of the service. If this is the case, the optometrist will require the same support as the full team. TheseT hese visits will allow the optometrist to identify patients who will require referral for ophthalmic review on a subsequent occasion. The team will need to be aware that this practise may prove counterproductive if patients, having received spectaclesspe ctacles on the rst visit, failure to return for subsequent review, and perhaps treatment.

Where an eye team visits an Aboriginal or Islander community, they do so at the invitation of the community and the Indigenous Medical SeService.rvice. It is important, therefore, that the professional notes generated remain in the community, although a practitioner may choose to take a copy (for example, when a patient will be seen at the hub for surgery or review). This allows contcontinuityinuity of care should the eye practitioner change, Indigenous Medical Service sta access to information about their patients and the investigations and treatments required (wit(withouthout the need for the eye practitioner to write a letter), and easy communication with other visiting specialists (for example, endocrinologist).

150 Appendix I (continued)

For the purpose of Medicare payment, the optometrist may accept patients referred from any source (nurse, Aboriginal/Islander Health Worker, medical practitioner, or patient self-referral). However, the specialist ophthalmologist requires a written dated referral from a medical practitioner or optometrist to meet Medicare payment for service requirements. It is important that this not be an impediment to patient access or ophthalmologist payment.

In many circumstances, the appearance of a patient’s name on a clinic list to see the ophthalmologist is all that constitutes a referral. The appointment may have been made by a nurse or clerical worker at a hospital, or a nurse or health worker resident in a community. In reality, patient management is shared more intimately by medical, nursing and other ancillary sta in these communities, so that s uch a referral is from the management team, including the doctor, rather than an individual. This arrangement maximises the use of scarce local medical manpower time, and is in keeping with the greater autonomy aorded nurses and ancillary sta in these communities. There will be variation between eye teams on how the strict Medicare requirement for a written dated referral from an appropriate practitioner will be overcome. Whicheve r is chosen, the use of local notes will facilitate the referral process, and reduce the paperwork. For example, a small standard inked stamp may be added to the notes and signed each year by the local medical ocer, or the optometrist may sign a similar standard stamp inserted in the medical notes by the administrator on the day of consultation. As an alternative, negotiation will Medicare may result in the acceptance that, in these circumstances, a separate written referral note may not be in existence.

Where there is no Indigenous Medical Service, or its facilities are too cramped, it may be necessary for the eye team to conduct outpatient clinic services at a local public hospital. To avoid contravening Medicare agreements concerning the bulkbilling of patients in a public facility, there needs to be an arrangement between the servi ce providers and the hospital. The hospital must be prepared to rent its facilities (space and sta) to the service providers, so they may be used as private rooms. The service providers can then use these rooms to conduct their private practice, bulkbill their patients, and meet Medicare requirements. In keeping with the aim of encouraging rural/remote service delivery by providing an overhead free environment fo r the practitioner to work, the hospital should then agree, as part of its contribution to the service, to waive the rental costs.

Where there is provision for non-Medicare fee-for-service surgery in rural and remote hospitals, as in South Australia, this scheme can be used by the ophthalmologist. In some places, improved service delivery will produce an increased demand for surgery and place a burden on the fee-for- service funds available to that hospital. Should this arise, Commonwealth/State negotiation and extra funding will need to be found so this does not jeopardise an improving and expanding service.

Elsewhere, as in Queensland, there may be no provision for non-Medicare fee-for-service surgery in rural and remote hospitals. Medicare funded surgery on public patients in public hospitals in this situation would contravene Medicare agreements. In this situation, ophthalmic patients need to be admitted to the hospital as private patients of the ophthalmologist, who is then permitted to charge those patients a fee for the surgery. Given the nancial circumstances of these patients, the ophthalmologist will accept the Medicare rebate alone, bulkbilling for the surgery. Since these patients are admitted as private patients of the ophthalmologist, the hospital is permitted to levy an admission charge, covering operating theatre and ward use, and recoup the cost of the intraocular lens inserted during cataract surgery. However, again, given the circumstances of these patients, the hospital will choose to waive these charges, instead meeting them itself as it would had these patients been admitted as public patients to that facility. Commonwealth/State 151 Appendix I (continued)

negotiation will need to address any hospital budget implications of this arrangement, and ensure no funding impediment limits surgical numbers.

The initiatives outlined above are primarily aimed at indigenous Australians. However, where established, such service delivery must be made available to the wider community. Also, it will be evident that this approach has application to other medical specialties.

This document concentrates on the optometric and ophthalmic components of the regional model of public-private service delivery. However, of equal importance at the ti me of service, is the collection of service related data. Only then can there be evaluation of service performance and medical intervention measures, setting of priorities for an ongoing needs-based health service, and equitable distribution of resources.

152 Appendix J

Recommendations of the Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program Report (Taylor et al 2004, pp. xviii-xxvii)

Major eye conditions and the literature

Recommendation 1

• OATSIH assist Regional Eye Health Coordinators (REHCs) and the primary health care services they work with to become familiar with evidence-based eye health care, with particular emphasis on the evidence base for any screening undertaken. • The available clinical guidelines for trachoma, diabetic retinopathy and cataract inform primary health care and specialist ophthalmic practice because they represent the best evidence available for the major eye conditions aecting Indigenous communities. This includes one or two yearly screening for diabetic retinopathy that is acceptable for those with nil or early retinopathy. • The visual acuity screening for school-aged children in place through International Centre for Eyecare Educat ion (ICEE) be evaluated and no further school screening should be implemented until the results of this evaluation are available.

Recommendation 2

Trachoma control should be the responsibility of government-run and regional public health units and be organised on a regional basis where population mobility is high. Primary health care service s should be involved in the detection and treatment of trachoma under the coordination of public health units.

The eye program and the primary health care sector

Recommendation 3

That standard duty statements be developed for REHCs (based on Attachment 10), with the remuneration they receive being dependent on their skills and experience but also recognising the substantial skills and experience this position requires. The duty statements provided represent two options: a health worker who provides high-level negotiation and support to the clinics in the region; or a health worker who provides a component of the eye service such as camera operation as part of a coordinated diabetes or chronic disease strategy.

Recommendation 4

That the focus of the NATSIEHP change from one of mostly facilitating ophthalmology and optometry clinics that run parallel with the primary health care service, to one that focuses on building the capacity of the primary health care services to optimally integrate with the specialist services required to manage chronic diseases such as (but not con ned to) diabetes. This will involve a productive overlap between the NATSIEHP and other developments in Indigenous primary health care. During the transition period, focus should be retained on eye conditions and be accompanied by: in-service training for primary health care sta so that they are better able to detect and manage eye conditions in their community; training for REHCs so that they are better able to support clinics to provide this management; the utilisation (or where necessary the establishment) of regional representative bodies to provide program advice, set priorities and monitor program implementation; and the incorporation of primary health care principles into regional and state eye plans so that the primacy for managing the eye care needs lies with the primary health care services.

153 Appendix J Appendix J (continued)

Specialist services

Recommendation 5

That the Optometrists Association Australia and the three schools of optometry oversee the recruitment and monitoring of optometrists working in the NATSIEHP.

Recommendation 6

That OATSIH and RANZCO: • Undertake a recurrent organised program to introduce and update ophthalmologists (and registrars) on the philosophy, practicalities and outcomes of the NATSIEHP. This should include a fa cility that allows for the recruitment of ophthalmologists, and a forum for the resolution of service delivery problems. • With other appropriate agencies of state and Commonwealth governments: – Examine and resolve the issue of fair remuneration for ophthalmologists who provide “free-to-patient” visiting services in Aboriginal Medical Services and rural/remote locations. – Act to change the remuneration for ophthalmologists who chose to relocate to rural and remote region to ensure that the ratio of ophthalmologist to population approaches the ratios available in large metropolitan centres. – Investigate the remuneration of ophthalmologists who read fundus photographs and refer where necessary. This remuneration could be in the form of a Medicare item number or a at fee paid through the NATSIEHP. Recommendation 7

That accredited ophthalmology training be refocused so that a proportion of places be made available in accredited ophthalmic training for individuals contracted to provide Indigenous and/or regional/ remote ophthalmic practice for a speci ed period after training has been completed. The contracted practitioner should either reside and work in a provincial centre, or be metropolitan-based and provide locum cover to regional ophthalmologists/optometrists, or supply visiting services to rural/ remote communities.

Recommendation 8

That well-resou rced, supervised and supported Indigenous ophthalmic practice be a compulsory attachment of at least several months duration for all senior registrars (post Part Two examination). This would require, for example, the establishment of four positions to accommodate approximately 20 registrars per year, each for two months. These may involve the coordinated attachment of registrars to a succession of ophthalmologists travelling to rural/remote communities, attachment to a provincial Aboriginal Medical Service, or similar.

Equipment

Recommendation 9

That OATSIH only funds equipment that is used by and based in primary health care services and that the provision of this equipment be linked to the presence of trained primary health care sta or primary care programs. OATSIH should advocate for other specialized equipment that is only used by optometrists and ophthalmologists to be funded through mainstream programs.

Recommendation 10

The equipment purchased (under any funding scheme) should complement rather than duplicate that which is available in the region. This is particularly relevant in urban areas where there are existing specialist eye health services. 154 Appendix J (continued)

Recommendation 11

Current specialist equipment should be audited to ensure that arrangements are in place to cover the maintenance, insurance, storage and replacement of such equipment.

Recommendation 12

That OATSIH engage and fund NACCHO to examine the distribution and utilisation of specialist equipment, to examine the impact its use has upon the provision of services and upon outcomes, and, where appropriate, to investigate its redeployment.

Recommendation 13

That OATSIH support, as part of a comprehensive screening program for diabetes complications, the use of retinal cameras by trained health workers in remote locations not visited by optometrists or ophthalmologists.

Using mainstream programs

Reco mmendation 14

The Visiting Optometrists Scheme (VOS): • Be administratively streamlined so that it is based on the needs of the community (rather than the desire of the practitioner). • Reimburse practitioners for travel time and cost, independently of the number of patients seen. This should be a fair nancial incentive (including recognition of travel time and variable attendance by patients at clinic) for practitioners to provide outreach services to rural and remote Australia. (This should be made administratively simple, e.g. a declaration by an REHC, rural nurse or AMS that the specialist visit did occur rather than receipts having to be submitted each time). • Be adequately publicised among the relevant practitioners and that it clearly cover all required forms of transport for remote community work.

Recommendation 15 That all practitioners using Aboriginal Medical Services as their practice location, be required to bulk bill for professional services and that the NATSIEHP provide a negotiated national guaranteed minimum daily remuneration (taking into account travel time, etc) by providing a sessional top-up payment if Medicare receipts fall below that level.

Recommendation 16 That NATSIEHP funds not be spent on spectacles but that each state/territory review its subsidised spectacle scheme so that applying for subsidised spectacles is simpli ed and eligibility criteria subsidies are more uniform across the jurisdictions.

Recommendation 17 That the Aboriginal health planning forums take up the issue of Aboriginal patients access to mainstream services both state and Commonwealth, including hospital services for eye procedures. Recommendation 18

That MSOAP be directed to prioritise a) funding ophthalmology travel; and b) specialist coordination to ensure the optimum use of specialist services. 155 Appendix J (continued)

Program monitoring

Recommendation 19

That OATSIH develop a minimum dataset for eye health based on Table 1 in Chapter 8 and, where possible, this data should be incorporated into Service Activity Reporting (SAR).

Recommendation 20

That OATSIH arrange substantial support for primary health care services to implement their Patient Information Recall System (PIRS) so that there is: • Ongoing training to improve sta familiarit y with computer systems in general, and to address sta turnover. • Backup systems and strategies for times when there is hardware or software failure. • Funding for dedicated data entry positions in many clinics. • Support and training for database managers and report collators. • Ongoing quality assurance and improvement systems.

Recommendation 21

That, where possible, and when communities support this, wide-area networks be developed b etween health services in the same and adjacent communities as a strategy for dealing with mobile populations and health service overlap.

Models of service delivery

Recommendation 22

Program sustainability is a key objective of the eye program and this may mean a reduction in the direct support that eye coordinators provide to eye clinics. This should only occur after rst gaining the support of the primary health care serv ices and assisting them to take on those responsibilities. It is recommended that regions that have well-established eye services, review their implementation plans to include strategies for integration, sustainability and the equitable access of clients to relevant mainstream services. This may mean coordinating strategies such as training, resources and program review in order to build the capacity of the primary health care service to integrate eye health into their work.

Future direction

Recommendation 23

That the coordination of NATSIEHP be integrated into a broader coordination role in the region, with an aim of improving the capacity of primary health care services to manage chronic disease. This coordination role would include: • Assisting clinics to develop their capacity to manage chronic diseases, including planned care, and associated systems that eciently link specialist services to primary health care services. • Negotiating with states/territories and with the specialist colleges such as RANZCO to improve the delivery of specialist services in the region. • Providing training and support to primary health care services so that they eectively support specialist clinics. This may mean that for some regions additional sta are require d.

156 Appendix J (continued)

Recommendation 24

Implementation plans addressing the aims and objectives contained in Chapter 10 should be developed by regional planning forums and monitored by those forums, which would then report to the state-based Aboriginal health forums. The timing for these plans will depend on the capacity of primary health care services to take on additional responsibilities and on training being provided to current REHCs to assist them to adopt their altered roles. Regular national networking meetings of coordinators should be part of the support provided to them.

157 Appendix K

The V isiting Optometrists Scheme (VOS) The Whitlam Labor Government held a joint sitting of both Houses of the Commonwealth Parliament in August 1974 and passed legislation that established the Health Insurance Commission (HIC) under its own Act of Parliament (AGAGD 2010). Medibank, a universal health insurance scheme, started operating under the HIC on 1 July 1975. The Visiting Optometrists Scheme (VOS) was introduced in 1975 to support optometric outreach services to isolated communities which would not otherwise have ready access to primary eye care. The VOS operates under the Health Insurance Act 1973 (AGAGD 2010a). The Table of Provisions Part VII Miscellaneous of the Health Insurance Act 1973 – Section 129A, Special arrangements for optometrical services states:

The Minister may on behalf of the Commonwealth make such special arrangements with participating opt ometrists as he or she thinks t for the purpose of ensuring that an adequate optometrical service will be available to persons living in isolated areas.

The Act de nes ‘participating optometrists’, ‘service’ and ‘persons’, but does not speci cally identify Indigenous people (AGAGD 2010a).

VOS has survived as an eye health policy instrument to the current time despite many changes of government and health policies in Canberra since 1975, including the abolition of Medibank (Standard) by the Liberal/National Coalition Government in 1978, and the introduction of Medicare on 1 February 1984 by the Labor Government (CDHA 2009b; MP 2010). The Minister for Health and Ageing on 22 October 2007 used his powers under Section 131 of the Health Insurance Act 1973 to delegate his powers under Section 129A of the Act to the Assistant Secretary, Rural Health Services and Policy Branch, Primary and Ambulatory Care Division, CDHA. This delegation was also granted to the position of Principal Adviser, Oce of Rural Health (ORH) when it was established on 1 July 2008 (CDHA 2009a, p. 6).

The current objectives of the VOS are to:

• Improve the eye health of Australians living and working in remote and very remote areas, and rural communities with an identi ed need for optometric services; • Increase visitin g optometrist services in areas of identified need; • Support optometrists to provide outreach services; and • Encourage and facilitate integration and communication between visiting optometrists, local

health providers and other visiting health professionals about ongoing patient care. (CDHA 2007b, p.3; CDHA 2009b; CDHA 2009c, p. 2; CDHA 2009d, p. 3).

The fourth National Member Forum of Vision 2020 Australia was held in A lice Springs on 27 July 2007 with a focus on Indigenous eye health and vision care (V2020A 2007). The Assistant Secretary of the Rural Health Branch of the CDHA156 outlined recent changes to VOS at this Forum (V2020A 2007, p. 4). These changes resulted from the 2005-06 review of VOS in response to stakeholder concerns that it was outdated, under-utilised, administratively complex, and had a relatively low level of participation by optometrist s (CDHA 2007b, p. 3). The Commonwealth budget in 2007-08 provided $11.9 million (GST exclusive) total funding for VOS over four years (CDHA 2009c, p. 4). The revised VOS in 2007 used the Accessibility/Remoteness Index of Australia (ARIA)157 to de ne isolation and remoteness, with exceptions for special circumstances, new guidelines for optometrists, and a communication and marketing strategy to increase awareness among optometrists and Indigenous communities (V2020A 2007, p. 4; CDHA 2007b, p. 5).

156 Ms Sharon Appleyard at that time. 157 Refer to the Accessibility/Remoteness Index of Australia (ARIA): Search Facility, viewed July 24 2010, 158 . Appendix K (continued)

The ORH in the CDHA released a Policy Framework document for VOS in October 2009 that had a strengthened focus on Indigenous people than earlier VOS policy documents (CDHA 2009c). The Commonwealth budget in 2009-10 provided $6.5 million over four years under the ‘Improving Eye and Ear Health Services for Indigenous Australians for Better Education and Employment Outcomes’ initiative to expand VOS to better target primary eye care to Indige nous people living in remote and very remote communities with an identi ed need for VOS services (CDHA 2009c, p. 4)158. Indigenous communities classi ed as ASGC-RA159 4-5 (remote and very remote) were the primary focus of the expanded VOS (CDHA 2009c, p. 2). The Policy Framework noted however, that Indigenous communities de ned as ASGC-RA 2 (inner regional) and not normally eligible for funding under the expansion of the VOS, may be considered where such communities have an identi ed need for optometric services supported by a letter from a local ACCHS or a local health professional (CDHA 2009c, p. 7).

The CDHA released new VOS Guidelines for Participating Optometrists in October 2009 (CDHA 2009d). The costs to optometrists covered by the VOS are:

• Travel; • Accommodation; • Meals and incidental expenses; • Lease of equipment and its transport to outreach locations; • Facility fees; • Absence from Practice Allowance; • Administrative support; • External locum support; • Accompanying health professionals; and • Cultural training and familiarisation

The CDHA also released National Priority Locations in October 2009 (CDHA 2009d, pp. 6-9).

158 The Minister for Indigenous Health, Rural and Regional Health and Regional Services Delivery announced this boost to VOS in a media release entitled ‘Eye care boost for 106 remote Indigenous communities’ on 17 May 2010 (Snowdon 2010a). 159 The eligibility criterion for new services under VOS as of 1 July 2009 was the Australian Bureau of Statistics (ABS) Australian Standard Geographical Classi cation – Remoteness Areas (ASGC-RA) (CDHA 2009c, p. 2). Details of the ASGC- RA are at ABS (2010), viewed 24 July 2010, .

159 Appendix K (continued)

(CDHA 2009d, pp. 14-17; CDHA 2009e). One hundred and fourteen (114) national priority locations were identi ed: 101 were considered high priority (88.6%); 7 medium priority (6.1%); and 6 low priority (5.3%). The 114 locations were mainly Indigenous communities. Figure 1 shows the distribution of these national priority locations by jurisdiction. Expressions of interest were only considered for the delivery of outreach optometric services to these identi ed national priority locations (CDHA 2009e, p. 1).

Figure 1 VOS - National Priority Locations - October 2009

49 50

45

40 35

Number 30 of 25 22 locations 20 15 12 10 5 7 5 5 0 2 3 3 1 NT 2 1 High Priority WA 1 QLD Medium Priority NSW 1 SA Low Priority * Source of data: CDHA 2009e VIC TAS

Participating optometrists can provide a range of services to all Australians under Medicare (CDHA 2010b). Sixty-seven optometrists were ‘grandfathered’ into these new arrangements from January 2008 to June 2010 (CDHA 2008b, pp. 26-27). The Medical Specialist Outreach Assistance Program (MSOAP) was introduced in the 2000-01 Commonwealth Budget as part of a package of measures under the ‘Regional Health Strategy: More Doctors Better Services’ initiative160, to improve access of rural and remote communities to medical specialist outreach services by complementing outreach specialist services provided by State and Northern Territory governments (CDHA 2007c; CDHA 2010, p. 3). The program is funded by the CDHA through the Oce of Rural Health, and is administered by Fund holders in each State and the Northern Territory who are in turn advised by Advisory Forums each comprised of a broad range of stakeholders with relevant knowledge and expertise about existing health delivery arrangements in rural and remote Australia (CDHA 2010). The Royal Australian and New Zealand College of Ophthalmologists (RANZCO) is a recognised Specialist College under MSOAP, and Ophthalmology General, Ophthalmology-Retinal Surgery, Ophthalmology-Surgery, and Paediatrics-Ophthalmology are listed as specialists supported under MSOAP (CDHA 2010, pp. 17-18).

160 This initiative was worth more than $550 million over four years (CDHAC 2001, p. 135). There were delays in rolling out MSOAP with ongoing negotiations with a range of stakeholders including State/Territory governments, specialist colleges, consumer groups, and rural communities (CDHAC 2001, p.134). 160 Appendix L The Medical Specialist Outreach Assistance Program (MSOAP) Gruen et al (2003) concluded from a Cochrane Review of randomised trials, controlled before and after studies, and interrupted time series analyses of visiting specialist outreach clinics in primary care or rural hospital settings covering many specialties, countries and settings, that specialist outreach can improve access, outcomes and service use – especially when delivered as part of a multifaceted intervention (Gruen et al 2003, p. 2). Gruen et al (2006) later found from a population based observational study of regular surgical, ophthalmological, gynaecological, and ear, nose, and throat outreach visits, compared with hospital clinics alone, on access, referral practices, and outcomes for the populations of three remote Indigenous communities in the NT over eleven years, that specialist outreach visits improve d access to specialist consultations and procedures without increasing elective referrals or demands for hospital inpatient services161. No such study has been made on the impact of MSOAP.

MSOAP has not been able to satisfy specialist need in many rural and remote Indigenous communities since its establishment, and has had diculties 162.

Consequently, the Commonwealth expanded MSOAP, starting in 2009-10, with funding of $54.7 million over four years to introduce multidisciplinary teams, comprising specialists, general practitioners and allied health professionals, to better manage complex and chronic health conditions in rural and remote communities (CDHA 2009f; CDHA 2010a). The CDHA prepared a Policy Framework for the expan ded MSOAP - called MSOAP-Indigenous Chronic Disease (MSOAP-ICD) - in September 2009 (CDHA 2009f), and released Guidelines for MSOAP-ICD 2009- 2013 in February 2010 (CDHA 2010a).

MSOAP-ICD is part of the Commonwealth Government Indigenous Chronic Disease Package of $805.5 million over four years resulting from the 29 November 2008 Council of Australian Governments (COAG) $1.6 billion National Partnership Agreement on Closing the Gap in Indigenous Health Outcomes (CDHA 2010a, pp. 3-4). The participants in the MSOAP-ICD are: the CDHA central and state/territory oces; the Fundholders; the MSOAP Advisory Forums; the health professionals delivering the services; and the host locations for outreach service provision (CDHA 2010a, p. 8). The MSOAP-ICD measure will cover the following costs: remuneration for MSOAP-ICD team members; Registrars and students; Workforce support; Administrative support for MSOAP-ICD team members; Travel costs; Accommodation costs; Meal and incidental costs; Equipment lease and transport; Outreach service host location; Absence from Practice Allowance; Back lling; Upskilling; Professional support; Telemedicine; and Case Conferencing (CDHA 2010a, pp. 11-16). Indigenous communities located in Australian Standard Geographical Classi cation (ASGC) – Remoteness Areas (RA) 2 (Inner Regional) to RA 5 (Very Remote) are eligible to be supported under MSOAP-ICD (CDHA 2010a, p. 5). According to the CDHA (2009, p. 126), MSOAP supported 1430 services in 2008-09, 1842 services in 2007-08, and 1455 services in 2006-07; however the nature and location of these services was not revealed.

161 The authors were examining the impact of a Commonwealth funded multidisciplinary Specialist Outreach Service (SOS) to remote Indigenous communities in the NT that commenced in 1997, predating the MSOAP initiative (Gruen & Bailie 2000; Gruen et al 2001; Gruen et al 2002). 162 The 2006 report ‘Integrated Regional Eye Service in Central Australia: Feasibility Assessment Report’ noted that there was a perception amongst Eye Health Services in Central Australia that MSOAP ‘does its own thing’ (BHC 2006, p. 42). Moreover, Turner et al (2009, p. 42) noted in their report ‘Outreach eye services in Australia’ that MSOAP was not as comprehensive or transparent as VOS for base practice or travel time expenses, and that there are regional idiosyncrasies due to outsourced administration.

161 Appendix L Appendix L (continued)

Eye health services are not speci cally referred to in the MSOAP-ICD Guidelines and Policy Framework documents, but improved access to quality eye health services for Indigenous people is clearly essential to help ‘Close the Gap’ for vision (Taylor & Stanford 2010, pp. 4-5).

The 2010-11 Commonwealth Government Budget allocated $5.0 million over four years from 2010-11 to 2013-14 to increase the number of ophthalmology outreach services provided through MSOAP. Delivery of new or expanded ophthalmology services will start from 1 January 2011. People aged over 55 years and living in ASGC RA 2 (Inner Regional) to RA 5 (Very Remote) will be targeted under this program (AG 2010).

162 Appendix M Additional Bibliography of Indigenous Eye Health Access Economics 2005, Investing in sight: strategic interventions to prevent vision loss in Australia, Eye Research Australia, Melbourne, viewed 6 July 2010,

Allam, B. 1993, ‘From Health Worker to Health Worker across Australia eye care education. The eye care education program’, Aboriginal and Islander Health Worker Journal, vol. 17, no. 4, pp. 5-6.

Amos, B., Bailes, B., Baxter, S., Burgoyne, T., Giaretto, A., Graham, A., Johnson, G., King, M., Pollard, M. & Stewart. M. 2002, ‘Report: An Eye Health Program for Aboriginal Health Workers in South Australia’, Aboriginal and Islander Health Worker Journal, vol. 26, no. 5, pp. 22-4.

Anonymous 1982, ‘Trachoma control’, The Lancet, vol. 319, no. 8270, pp. 489-90.

Asche, V. & Hutton, S. 1990, ‘Serovars of Chlamydia trachomatis in Northern Australia’ Annual Report: Menzies School of Health Research 1989-90, pp. 91-92.

Australia and New Zealand Horizon Scanning Network 2004, Horizon scanning report: the detection of diabetic retinopathy utilising retinal photography in rural and remote areas in Australia, National Horizon Scanning Unit, Adelaide Health Technology Assessment, Adelaide, viewed 1 June 2010,

Australian Indigenous HealthInfoNet 2004, Review of eye health of Indigenous peoples, viewed 10 July 2010,

Australian Institute of Health and Welfare 2005, Vision problems among older Australians, AIHW, Canberra, viewed 10 July 2010,

Australian Institute of Health and Welfare 2007, A guide to Australian eye health data, AIHW, Canberra, viewed 10 July 2010,

Australian Institute of Health and Welfare 2008, Eye health in Australia: a hospital perspective, AIHW, Canberra, viewed 10 July 2010,

Australian Institute of Health and Welfare 2008, Eye health among Australian children, AIHW, Canberra, viewed 10 July 2010,

Australian Institute of Health and Welfa re 2009, A guide to Australian eye health data, 2nd ed., AIHW, Canberra, viewed 10 July 2010,

Bailie, R., Si, D., Dowden, M., O'Donoghue, L., Connors, C., Robinson, G., Cunningham, J. & Weeramanthri, T. 2007, ‘Improving organisational systems for diabetes care in Australian Indigenous communities’, BMC Health Services Research, vol. 7, no. 67, viewed 13 July 2010,

Ball, P. 2008, ‘The power of foresight’, The Australian Journal of Pharmacy, vol. 89, no. 1063, p. 38.

Banks, J. & Braun, P. 1985, ‘Trachoma treatment in Aborigines’ [letter] Medical Journal of Australia, vol. 142, no. 10, p. 576.

Barnett, L. 1979, Blind and visually handicapped Aboriginals: a report on the project conducted by the Australian National Council of and for the Blind and the Central Australian Aboriginal Congress examining the appropriateness of specialist rehabilitation services ,The Australian National Council of and for the Blind and the Central Australian Aboriginal Congress. 163 Barry, C. J., Constable, I. J., McAllister, I. L. & Kanagasingam, Y. 2006, ‘Diabetic screening in Western Australia: A photographer’s perspective’, Journal of Visual Communication in Medicine, vol. 29, no. 2, pp. 66-75.

Basedow, H. 1932, ‘Diseases of the Australian Aborigines’, Journal of Tropical Medicine and Hygiene, vol. 35, no. 12-13.

Beattie, A. 1986, The problems of Aboriginal patients at Kalano health Service, Katherine Northern Territ ory 1982-4, Master of Medicine thesis, University of Sydney.

Blackwell, N. A., Kelly, G. J. & Lenton, L. M. 1997, ‘Telemedicine ophthalmology consultation in remote Queensland’, Medical Journal of Australia, vol. 167, no. 11/12, pp. 583-6.

Bowden, F. J. & Fethers, K. 2008, ‘”Let’s not talk about sex”: reconsidering the public health approach to sexually transmissible infections in remote Indigenous populations in Australia’, Medical Journal of Australia, vol. 188, no. 3, pp. 182–4.

Brian, G., Dalzell, J., Nangala, S. & Hollows, F. 1990, ‘Basic ophthalmic assessment and care workshops for rural health workers’, Australian & New Zealand Journal of Ophthalmology, vol. 18, no. 1, pp. 99-102.

Brian, G. 1998, The Regional Model of Public-Private Eye Service Delivery, in possession of the author, Brisbane.

Briggs, L. & Peters, J. 2000, Victorian Koori eye health project, presentation at 12th National Health Promotion Conference: Inequalities in Health - reecting back, stepping forward, 29th Oct - 1st Nov, Melbourne, Australia. Abstract available at http://archive.healthinfonet.ecu.edu.au/html/html_bulletin/bull_9/bulletin_conference1.htm 30 May 2010

Briscoe, G. 1984, ‘History of eye program’, Department of Aboriginal A airs Newsletter, vol. 5, no. 3, p. 11.

Briscoe, G. 1991, ‘Aboriginal health and political economy in Australia’, in The Heal th of Aboriginal Australia, eds J. Reid & P Trompf, Harcourt Brace, Sydney, p. 393.

Brown, G. 1994, ‘When Island eyes aren’t smiling’, Communicable Diseases Intelligence, vol. 18, no. 12, p. 286.

Burnett, A. & Holden, B. 2009, Vision-related quality of life tool in Indigenous communities, International Centre for Eye care Education, viewed 10 July 2010,

Burnett, A. & Holden, B. 2009, Rapid assessment of blindness and vision impairment in indigenous communities, International Centre for Eye care Education, viewed 10 July 2010,

Burns, J., Thomson, N. 2004, ‘Summary of Indigenous Health: Eye Health’, Aboriginal and Islander Health Worker Journal, vol. 28 no. 5, pp. 32-4.

Boyd T.F. (1989) ‘Trachoma in the Northern Territory, 1946 – 1986’ [letter] Medical Journal of Australia, vol. 151, pp. 727.

Campbell, J. 2007, Invisible Invaders: Smallpox and other Diseases in Aboriginal Australia, 1780-1880, Melbourne University Press, South Melbourne.

Cameron, S. 1994, ‘Surgery under the big top’, Hospital and Healthcare, vol. 25, no. 9, p. 24. 164 Capon, A. 1989, ‘Development of a strategy for elimination of Chlamydia in Aboriginal communities’, Annual Report: Menzies School of Health Research 1989-90, pp. 97-8.

Capon, A., Foreman, A., Powers, J., Douglas, F., Bastian, I. & Mathews, J. 1990, ‘Antibiotic usage, chlamydia trachomatis and trachoma’ Annual Report: Menzies School of Health Research 1989-90, pp. 93-4.

Chang, J. H., Raju, R., Henderson, T. R. & McCluskey, P. J. 2010, ‘Incidence and patteron f acute anterior uveitis in Central Australia’, British Journal of Ophthalmology, vol. 94, no. 2, pp. 154-6.

Clark, A., Morgan, W. H., Kain, S., Farah, H., Armstrong, K., Preen, D., Semmens, J. B. & Yu, D. 2010, ‘Diabetic retinopathy and the major causes of vision loss in Aboriginals from remote Western Australia’, Clinical & Experimental Ophthalmology, vol. 38, no. 5, pp. 475-82.

Collinson, H., Mein, J. & Coleman, K. 2006, ‘Trachoma control program 2005’, Kimberley Public Health Unit Bulletin, vol. 44, pp. 8-9.

Commonwealth Department of Health and Ageing 2004, Australian Government Response to the Review of the Implementation of the National Aboriginal and Torres Strait Islander Eye Health Program, ADHA, Canberra, viewed 26 May 2010,

Cooper, R., Coid, D. & Constable, I. 1986, ‘Trachoma: 1985 update in Western Australia’, Australian and New Zealand Journal of Ophthalmology, vol. 14, no. 4, pp. 319-23.

Cordell, D. 1991, Regional trachoma screening programme - 1990/91, Health Department of Western Australia, Perth.

Crowe, C. 1995, ‘Aboriginal health: common illnesses’ Australian Family Physician, vol. 24, no. 8, pp. 1469-73.

Cumpston, J. H. L. 1989, Health and disease in Australia – a history. Introduced and edited by M. J. Lewis. AGPS, Canberra.

Curr ie, B. 1995, ‘Use of azithromycin in the Northern Territory’, Northern Territory Communicable Diseases Bulletin, vol. 2, pp. 4-5.

Currie, B. 1996, ‘The rationale for restricting azithromycin use in the Northern Territory’, Northern Territory Communicable Diseases Bulletin, vol. 3, no. 4, pp. 16-7. da Cruz, L., Dadour, I. R., McAllister, I. L., Jackson, A., Isaacs, T. 2002, ‘Seasonal variation in trachoma and bush ies in north-western Australian Aboriginal communities’, Clinical and Experimental Ophthalmology, vol. 30, no. 2, pp. 80-3.

Dawson, V., Coelen, R., Murphy, S., Graham, D., Dyer, H. & Sunderman, J. 1985, ‘Microbiology of chronic otitis media with eusion among Australian Aboriginal children: role of Chlamydia trachomatis’, Australian Journal of Experimental Biology and Medical Science, vol. 63, no. 1, pp. 99-107.

Denner, G. A. 1983, Endemic trachoma - epidemiology and chemotherapy in three Western Australian communities. Master of Public Health thesis, University of Sydney.

165 Diamond, J. P., McKinnon, M., Barry, C., Geary, D., McAllister, I. L., House, P. & Constable, I. J. 1998, ‘Non-mydriatic fundus photography: a viable alternative to fundoscopy for identi cation of diabetic retinopathy in an Aboriginal population in rural Western Australia?’, Australian and New Zealand Journal of Ophthalmology, vol. 26, no. 2, pp. 109-15.

Dimond, F. 2000, ‘Aboriginal and Torres Strait Islander Eye Care’, Aboriginal and Islander Health Worker Journal, vol. 24, no. 4, pp. 27-8.

Dirani, M., McAuley, A. K., Maple-Brown, L., Kawasaki R., McIntosh, R. L., Harper, C. A., Lamoureux, E. l., Tatipata, S., Dunbar, T., O'Dea, K. & Cunningham, J. 2010, ‘Association of retinal vessel calibre with diabetic retinopathy in an urban Australian Indigenous population’, Clinical and Experimental Ophthalmology, Accepted Article DOI: 10.1111/j.1442-9071.2010.02322.x

Douglas, F. 1987, ‘The Chlamydia Germ and Sicknesses’, Aboriginal and Islander Health Worker Journal, vol. 11, no. 2, pp. 22-8.

Durkin, S. R., Casson, R. J., Selva, D. & Newland, H. S. 2006, ‘Prevalence of trachoma among a group of Aboriginal school children in remote South Australia’ [letter], Clinical and Experimental Ophthalmology, vol. 34, no. 6, pp. 628-9.

Durkin. S. R., Tan, E. H., Casson, R. J., Selva, D. & Newland, H. S. 2007, ‘Distance refractive error among Aboriginal people attending eye clinics in remote South Australia’ Clinical and Experimental Ophthalmology, vol. 35, no. 7, pp. 621-6.

Durkin, S. R., Tan, E. H., Casson, R. J., Selva, D. & Newland, H. S. 2007, ‘Central corneal thickness among Aboriginal people attending eye clinics in remote South Australia’, Clinical and Experimental Ophthalmology, vol. 35, no. 8, pp. 728-32.

Durkin, S. 2008, ‘Eye health programs within remote Aboriginal communities in Australia: a review of the literature’, Australian Health Review, vol. 32, no. 4, pp. 664-76.

Edwards, F. M., Wise, P. H., Craig, R. J., Thomas, D. W. & Murchland, J. B. 1976, ‘Visual acuity and retinal changes in South Australian Aborigines’, Australian and New Zealand Journal of Medicine, vol. 6, no. 3, pp. 205-9.

Ellis, R. 2000, ‘Vision 2020: The Right to Sight – Australia’, Aboriginal and Islander Health Worker Journal, vol. 24, no. 6, p. 23. Evans. K. & Ambler, S. 2000, Our health, our future, our responsibility. Paper presented at the 12th National Health Promotion Conference, 29 Oct – 1 Nov, Melbourne, viewed 10 June 2010,

Evans, K. 2001, Our health, our future, our responsibility. Paper presented at the 6th National Rural Health Conference, Canberra 4 – 7 March, viewed 10 June 2010,

Ewald, D. 1999, Literature review of trachoma control options for Central Australia, unpublished thesis report for Master of Applied Epidemiology Program, Australian National University, Canberra.

Ewald, D. P., Hall, G. V. & Franks, C. C. 2003, ‘An evaluation of a SAFE-style trachoma control program in Central Australia’ [letter in reply], Medical Journal of Australia, vol. 179, no. 2, pp. 117-8.

166 Eye care resources. Developed for the Indigenous Australian community’, May 2007, Queensland University of Technology, School of Optometry, viewed 22 July 2010,

Figueira, E. 2006, Trachoma: an evidence-based global and Australian perspective, The Fred Hollows Foundation, Burwood, NSW.

Flynn, F. 1957, ‘Trachoma among natives of the Northern Territory of Australia’, Medical Journal of Australia, vol. 11, pp. 269-277.

Francis, I. C., Flynn, F. & Hollows, F. 1981, ‘Deep Corneal Leukoma adherens in an Aboriginal population’, Australian Journal of Ophthalmology, vol. 9, pp. 303-9.

Fred Hollows Foundation 2007, ‘Fight against cataract stepped up in Central Australia’, Aboriginal and Islander Health Worker Journal, vol. 31, no. 6, p. 11.

Fred Hollows Foundation 2007, ‘Drop-in doctors will fail without support from existing services’, Aboriginal and Islander Health Worker Journal, vol. 31, no. 6, p. 34.

Gay, J. E. 1984, ‘Australian Aboriginal health and change’, The Journal of the Royal Society for the Promotion of Health, vol. 104, pp. 188 – 92.

Gerry, P. & Johnson, K. 2006, ‘Cup-to-disc ratios of Aboriginal and non-Aboriginal youths’, Clinical and Experimental Optometry vol. 89, no. 5, pp. 306-9.

Goujon, N., Brown C. M., Xie, J., Arnold, A., Dunn, R. A., Keee, J. E., Taylor, H. R. 2010, ‘Self-reported vision and health of Indigenous Australians’, Clinical and Experimental Ophthalmology, DOI: 10.1111/j.1442- 9071.2010.02306.x

Gracey, M. & Forbes, D. 1996, ‘Treating common medical problems in Aboriginal children’, Current Therapeutics, vol. 37, no. 6, pp. 37-45.

Graham, D. & Nichols, R. 1973, ‘Studies on the epidemiology, microbiology and immunology of trachoma among children at three centres in Western Australia’, Medical Journal of Austr alia, vol. 2, no. 8, pp. 353-60.

Graham, D. M. 1975, ‘Trachoma’ University of Melbourne Gazette, vol. 35, pp. 4-6.

Graham, P. 1982, ‘An operation for entropion and trichiasis: a composite of methods for lid margin rotation’, Australian Journal of Ophthalmology, vol. 10, no. 4, pp. 267-270.

Graham, P. 1994, ‘The epidemiology of blindness and trachoma in the Anangu Pitjantjatjara of South Australia’ [letter], Medical Journal of Australia, vol. 161, p. 456.

Graham, P. 1995, ‘Blindness and trachoma in South Australia’ [letter], Australian and New Zealand Journal of Ophthalmology, vol. 23, no. 1, pp. 78-9.

Graham, P. 1996, ‘Blindness and trachoma in South Australia’ [letter], Australian and New Zealand Journal of Ophthalmology, vol. 24, no. 2, p. 161.

167 Hall, G., Ewald, D., Franks, C., Conlon, N. & Porigneaux, P. 2000, National Aboriginal Health Strategy Environmental Health Program: Evaluation of health outcomes in a Central Australian Community, baseline Report. Unpublished report for Territory health Services and Yuendumu Community.

Hardy, D. & Moore, B. W. 1971, Trachoma in Aboriginal school children at Yalata, South Australia, 1965-71, The Australian Aboriginal Child : report of the rst Australian Ross Conference 3rd December 1971, Ross Laboratories, Sydney pp. 41-44

Hardy, D., Surman, P. G. & Howarth, W. H. 1967, ‘The cytology of conjunctival smears from Aboriginal schoolchildren at Yalata, South Australia, after improved hygienic conditions and treatment with oxytetracycline and systematic sulphormetoxine’, American Journal of Ophthalmology, vol. 63, pp. 1538- 1540.

Health Protection Group 2006, Stop trachoma, poster, Western Australian Depart ment of Health. Available at http://www.public.health.wa.gov.au/2/606/2/trachoma.pm on 12 July 2010.

Hertzberg, R. 1980, ‘Trachoma’, Medical Journal of Australia, vol. 2, no. 2, p. 62.

Hewitt, A. 2000, Outcomes of cataract surgery and major lower limb amputation surgery in people from remote communities in the Top End of the Northern Territory, Bachelor of Medical Science thesis, University of Tasmania, Hobart, Tasmania.

Hewitt, A., Verma, N. & Gruen, R. 2001, ‘Visual outcomes for remote Australian Aboriginal people after cataract surgery’, Clinical and Experimental Ophthalmology, vol. 29, no. 2, pp. 68-74.

Hewitt, A. & Verma, N. 2002, ‘Posterior capsule opaci cation after cataract surgery in remote Australian Aboriginal patients’, Clinical and Experimental Ophthalmology, vol. 30, no. 4, pp. 248-51.

Holden, B. 2000, ‘The right to sight’, Clinical and Experimental Optometry, vol. 83, no. 3, pp. 113-5.

Hollows, F. 1973, ‘Some aspects of Australian Aboriginal eye disease’, Transactions of the Ophthalmological Society of New Zealand, vol. 25, pp. 148-150.

Hollows, F. 1977, ‘The National Trachoma and Eye Health Program’, Australian Journal of Ophthalmology, vol. 5, pp. 151-154.

Hollows, F. 1985, ‘Community-based action for the control of trachoma’, Reviews of Infectious Diseases, vol. 7, pp. 777-782.

Hollows, F. C. 1986, ‘Some aspects of Aboriginal health’, Australian Family Physician vol. 159, no. 7, pp. 884-7.

Hollows, F. 1978, ‘The ocular status of old Aborigines’ Hansard : 3612-3619

Hollows, F. 1978, ‘Australian Aboriginal eye health: and what must be done’ Hansard : 3602-3611.

Hollows, F. 1989, ‘Trachoma ‘down the track’,’ Medical Journal of Australia, vol. 151, no. 4, pp. 182 – 183.

Hollows, F. & Moran, D. 1981, ‘Cataract: the ultraviolet risk factor’, The Lancet vol. 318, no. 8258, pp. 1249-50. House, P. H. 1986, ‘Ocular leprosy – a case-report and discussion of the pathology’, Australian and New Zealand Journal of Ophthalmology, vol. 14, no. 1, pp. 59-63. 168 Hunt, R. 1977, ‘The national trachoma and eye health program’, Australian Journal of Ophthalmology, vol. 15, pp. 149-150.

International Centre for Eye care Education (ICEE) 2004, ‘Aboriginal eyecare success’, Aboriginal and Islander Health Worker Journal, vol. 28, no. 2, p. 25.

International Centre for Eye care Education (ICEE) 2009, I See for Culture Resource Kit, includes information booklet, ip charts and posters, viewed 12 July 2010,

Ismail, S. 2010, ‘Six Months with ICEE NSW Aboriginal Eye Care Programme’, Aboriginal and Islander Health Worker Journal, vol. 34, no. 1, pp. 4-6.

Jaross, N. 2003, Diabetic retinopathy in the Katherine region of the Northern Territory Doctor of Philosophy thesis, University of Adelaide, South Australia.

Johnson, G. H. & Mak, D. B. 2003, ‘An evaluation of a SAFE-style trachoma control program in Central Australia’ [letter], Medical Journal of Australia, vol. 179, no. 2, pp. 116-7.

Jones, H. 1989, ‘Some bush medicines from Yikaniwuy’, Aboriginal Health Worker, vol. 13, no. 2, pp. 25-26.

Jones, J. N., Smith, L. & Briscoe, G. 2005, ‘The National Trachoma and Eye Health Program History Project: an Aboriginal perspective’, Aboriginal and Islander Health Worker Journal, vol. 29, no. 6, pp. 11-2.

Jones, J. N., Smith, L. & Briscoe, G. 2006, ‘They Used to Call It S andy Blight: Aboriginal Health and Censorship in Australia’, Australian Aboriginal Studies, vol. 2, pp. 62-7.

Kain, S., Morgan, W., Riley, D., Dorizzi, K., Hogarth, G. & Yu, D. 2007, ‘Prevalence of trachoma in school children of remote Western Australian communities between 1992 and 2003’, Clinical and Experimental Ophthalmology, vol. 35, no. 2, pp. 119-23.

Kalokerinos, A. 1977, Cataracts Aboriginal Medical Service Information Service, Redfern, Syd ney.

Kalokerinos, A. 1977, Ascorbic acid, the eye, diabetes and herpes Aboriginal Medical Service Information Service, Redfern, Sydney.

Karagiannis, A., & Newland, H. 1996, ‘Mobile retinal photography: a means of screening for diabetic retinopathy in Aboriginal communities’, Australian and New Zealand Journal of Ophthalmology, vol. 24, no. 4, pp. 333-7.

Keefe, J. E., McCarty, C., Doyle, M., Harper, C. & Taylor, H. 1997 ‘Screening for diabetic retinopathy by Indigenous health workers’, Investigative Ophthalmology and Visual Science, vol. 38, no. 4, S236.

Keys, T. & O’Hara, M. 2009, Providing eye care to remote Indigenous communities in the Northern Territory: a case study examining success factors and challenges from a collaborative approach between a NGO and AMS, The 10th National Rural Health Conference Cairns, Qld, 17-20 May 2009, viewed 24 May 2010,

Keys, T., De Souza, N., Cronjé, S., Morse, A., Tahhan, N., Schlenther, G. & Stern, J. 2009, A training program for aboriginal eye health workers in the Northern Territory of Australia, International Centre for Eye care Education, viewed 11 July 2010,

169 Kimberley Public Health Unit & Turvey, R. 1995, Trachoma ip chart, Iris and Lens, reproduced by Health Protection Group, Dept. Health, Gov. of Western Australia, viewed 7 July 2010,

Kimberley public Health Unit 1996, Trachoma control program report Kimberley 1996, Kimberley Public Health Unit, Derby.

Kimberley public Health Unit 1996, Guidelines for the control of ocular trachoma, Kimberley Public Healt h Unit, Derby.

King, M. & Baxter, S. 2003, ‘Co-operative inquiry: the development of a visual impairment prevention program initiative for two Aboriginal communities in South Australia’, Contemporary Nurse, vol. 15, no. 3, pp. 241-8.

Krause, V. 1998, ‘An outbreak of non-sexually transmitted gonococcal conjunctivitis in Central Australia and the Kimberley region’ – editorial comment, Communicable Diseases Intelligence, vol. 22, no. 4, pp. 57-58.

Laforest, C., Durkin, S., Selva, D., Casson, R. & Newland, H. 2006, ‘Aboriginal versus non-Aboriginal ophthalmic disease: admission characteristics at the Royal Adelaide Hospital’, Clinical and Experimental Ophthalmology, vol. 34, no. 4, pp. 324-8.

Laming, A., Difrancesco, M., Dixon, B., Halkett, M., Kruger, G., Bonson, A., Bell, A., Crilly, C., Currie, B. & Mathews, J. 1995, ‘Trachoma six months after the rst azithromycin program in Australia’, Northern Territ ory Communicable Diseases Bulletin, vol. 2, no. 7, pp. 1-3.

Laming, A., Difrancesco, M., Dixon, B., Halkett, M., Kruger, G., Bonson, A., Bell, A., Crilly, C., Currie, B. & Mathews, J. 1995, ‘Trachoma six months after the rst azithromycin program in Australia’, Northern Territory Communicable Diseases Bulletin, vol. 2, no. 7, pp. 1-3.

Laming, A. C. & Currie, B. J. 2003, ‘An evaluation of a SAFE-style trachoma control program in Central Australia’ [letter], M edical Journal of Australia, vol. 179, no. 2, p. 117.

Landers, J., Kleinschmidt, A., Wu., J, Burt, B., Ewald, D. & Henderson, T. 2005, ‘Prevalence of cicatricial trachoma in an Indigenous population of Central Australia: the Central Australian Trachomatous Trichiasis Study (CATTS)’, Clinical and Experimental Ophthalmology, vol. 33, no. 2, pp. 142-6.

Landers, J., Henderson, T. & Craig, J. 2006, ‘Optic nerve head parameters of an Indigenous population living within Central Australia’, Clinical and Experimental Ophthalmology, vol. 34, no. 9, pp. 852-6.

Landers, J., Billing, K., Mills, R., Henderson, T., Craig, J. 2007, ‘Central corneal thickness of Indigenous Australians within Central Australia’, American Journal of Ophthalmology, vol. 143, no. 2, pp. 360-2.

Landers, J., Henderson, T. & Craig, J. 2010, ‘Central Australian Ocular Health Study: design and baseline description of participants’, Clinical and Experimental Ophthalmology, vol. 38, no. 4, pp. 375-80.

Landers, J., Henderson, T. & Craig, J. 2010, ‘Prevalence and associations of refractive error in indigenous Australians within central Australia: the Central Australian Ocular Health Study’, Clinical and Experimental Ophthalmology, vol. 38, no. 4, pp. 381-6.

170 Landers, J., Henderson, T. & Craig, J. 2010, ‘Prevalence and associations of cataract in indigenous Australians within central Australia: the Central Australian Ocular Health Study’, Clinical and Experimental Ophthalmology, vol. 38, no. 4, pp. 387-92.

Landers, J., Henderson, T., Abhary, S. & Craig, J. 2010, ‘Prevalence and associations of diabetic retinopathy in indigenous Australians within central Australia: the Central Australian Ocular Health Stu dy’, Clinical and Experimental Ophthalmology, vol. 38, no. 4, pp. 393-7.

Landers, J., Henderson, T. & Craig, J. 2010, ‘Prevalence and associations of blinding trachoma in Indigenous Australians within central Australia: the Central Australian Ocular Health Study’, Clinical and Experimental Ophthalmology, vol. 38, no. 4: pp. 398-404.

Landers, J., Henderson, T. & Craig, J. 2010, ‘The prevalence and causes of visual impairment in indigenous Australian s within central Australia: the Central Australian Ocular Health Study’, British Journal of Ophthalmology, Published Online First: 7 June 2010

Lansingh, V. C. 2005, Primary health care approach to trachoma control in Aboriginal communities in Central Australia, PhD thesis, Centre for Eye Research Australia, University of Melbourne, viewed 12 July 2010,

Layland, B., Holden, B., Evans, K., Bailey, S. 2004, ‘ICEE/AHMRC NSW Aboriginal Eye and Vision care Program, Australia’ Rural and Remote Health vol. 4 on-line, no. 247, viewed 6 June 2010,

Layland, B., Ismail, S., Waddell, C., Louwdyk, E. & Holden, B. n.d., NSW Aboriginal eye care programme, International Centre for Eye care Education, viewed 10 July 2010,

Layland, B., Burnett, A., Schlenther, G., Ismail, S, Waddell, C., Louwdyk, E. & Holden, B. n.d. Aboriginal Health College, International Centre for Eye care Education, viewed 10 July 2010,

Leach, A. J., Shelby-James, T.M., Mayo, M., Gratten, M., Laming, A. C., Currie, B. J. & Mathews, J. D. 1997, ‘A prospective study of the impact of community-based azithromycin treatment of trachoma on carriage and resistance of streptococcus pneumoniae’, Clinical Infectious Diseases, vol. 24, no. 3, pp. 356-62.

Leach, A. J., Currie, B. J. & Mathews, J. D. 1998, ‘Impact of community-based azithromycin treatment of trachoma on carriage and resistance of Streptococcus pneumoniae’ [letter], Clinical Infectious Diseases, vol. 26, no. 1, pp. 248 - 9.

Longmore, B. 2006, ‘Eye clearing sneezeweeds’, Australian Pharmacist, vol. 25, no. 10, pp. 806-7.

Mabey, D., Fraser-Hurt, N. & Powell, C. 2005, ‘Antibiotics for trachoma’, Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD001860. DOI: 10.1002/14651858.CD001860.pub2., viewed 29 July 2010,

Mackey. D. A. 2007, ‘Central corneal thickness and glaucoma in the Australian Aboriginal population’, Clinical and Experimental Ophthalmology, vol. 35, no. 8, pp. 691-2.

Mackinolty, C. 2005, ‘Getting in the swim from the desert to the sea. Ian Thorpe Champions Pools Program’, Aboriginal and Islander Health Worker Journal, vol. 29, no. 2, pp. 16-7. 171 MacNamara, B. 2001, ‘Don't Lose Sight of Your Vision’, Aboriginal and Islander Health Worker Journal, vol. 25, no. 6, pp. 12-3.

MacNamara, B. 2005, ‘Vision care NSW - spectacle program’, Aboriginal and Islander Health Worker Journal, vol. 29, no. 6, p. 28.

Main, R. 2009, Rural optometry in Australia, 10th National Rural Health Conference Cairns, Qld, 17-20 May 2009, viewed 10 July 2010,

Mak, D. 2006, ‘Better late than never: a national approach to trachoma control’, Medical Journal of Australia, vol. 184, no. 10, pp. 487-8.

Mak, D. B. & Plant, A. J. 2001, ‘Trichiasis in Aboriginal people of the Kimberley region of Western Australia’, Clinical and Experimental Ophthalmology, vol. 29, no. 1, pp. 7-11.

Mak, D. B., Smith, D. W., Harnett, G. B. & Plant, A. J. 2001, ‘A large outbreak of conjunctivitis caused by a single genotype of neisseria gonorrhoeae distinct from those causing genital tract infections’, Epidemiology and Infection, vol. 126, no. 3, pp. 373-8.

Mak, D., Plant, A. & McAllister, I. 2003, ‘Screening for diabetic retinopathy in remote Australia: a program description and evaluation of a devolved model’, Australian Journal of Rural Health, vol. 11, no. 5, pp. 224-30.

Mak, D., O'Neill, L., Herceg, A. & McFarlane, H. 2006, ‘Prevalence and control of trachoma in Australia, 1997-2004’, Communicable Diseases Intelligence Quarterly Report, vol. 30, no. 2. pp. 236-47.

Mann, I. 1954, Ophthalmic Survey of the Kimberley Division of Western Australia, Department of Public Health, Western Australia.

Mann, I. 1954, Ophthalmic Survey of the Eastern Goldelds Area of Western Australia Department of Public Health, Western Australia.

Mann, I. 1954, Ophthalmic Survey of the South-West Portion of Western Australia Department of Public He alth, Western Australia.

Mann, I. 1957, ‘Probable origins of trachoma in Australasia’, Bulletin of the World Health Organization, vol.16, no. 6, pp. 1165-87.

Mann, I. 1957, ‘Report of ophthalmic ndings in Warburton Range natives of Central Australia’, Medical Journal of Australia, vol. 2, pp. 610-2.

Mann, I. & Rountree, P. 1968, ‘Geographic ophthalmology – a report on a recent survey of Australian Aboriginals’, American Journal of Ophthalmology, vol. 66, no. 6, pp. 1020

Mann, I. 1972, ‘Eye disease in the Eskimo and in the Australian Aboriginal: a brief comparison’, Acta Ophthalmologica, vol. 50, no. 4, pp. 543-8.

Ma nn, I. 1972, ‘Public health ophthalmology within the nations. Australia.’ Israel Journal of Medical Sciences, vol. 8, no. 8, pp. 1060-3.

Maple-Brown. L. J., Brimblecombe, J., Chisholm, D. & O'Dea, K. 2004, ‘Diabetes care and complications in a remote primary health care setting’, Diabetes Research and C linical Practice, vol. 64, no. 2, pp. 77-83. 172 Maple-Brown, L., Cunningham, J., Dunne, K., Whitbread, C, Howard, D., Weeramanthri, T, Tatipata, S., Dunbar, T., Harper, C. A., Taylor, H. R., Zimmet, P., O’Dea, K, & Shaw, J. E. 2008, ‘Complications of diabetes in urban Indigenous Australians: The DRUID study’, Diabetes Research and Clinical Practice, vol. 80, no. 3, pp. 455-62.

Matters, R., Wong, I. & Mak, D. 1997, ‘An outbreak of non-sexually transmitted gonococcal conjunctivitis in Central Australia an d the Kimberley region, 13 February to 27 June 1997’, The Northern Territory Communicable Diseases Bulletin, vol. 4, no. 3, pp. 1-7.

Matters, R., Wong, I. & Mak, D. 1998, ‘An outbreak of non-sexually transmitted gonococcal conjunctivitis in Central Australia and the Kimberley region’, Communicable Diseases Intelligence, vol. 22, no. 4, pp. 52-6.

Mayers, N. 1982, Report to the Royal Australian College of Ophthalmologists, Royal Australian College of Ophthalmologists, Sydney.

McAllister, I. L. 2007, ‘Screening for diabetic retinopathy in rural and remote areas of Australia’, Australian and New Zealand Journal of Ophthalmology, vol. 26, no.2, pp. 105-6.

McCarty, C. A. 2003, ‘Diabetic retinopathy: yet another reason for a comprehensive eye- care programme for Australian Aborigines and Torres Strait Islanders’, Clinical and Experimental Ophthalmology, vol. 31, no. 1, pp. 6-7.

McConnell, E., Newland, H., Manning, J. & Paech, M. c1993, Te hnology assessment applied: a comparison of ophthalmic diagnostic techniques to detect diabetic retinopathy among Aboriginal people in central Australia’, Contemporary Nurse, vol. 2, no. 1, pp. 23-8.

McDermott, R., Tulip, F. & Schmidt, B. 2004, ‘Diabetes care in remote northern Australian Indigenous communities’, Medical Journal of Australia, vol. 180, 10, pp. 512-6.

McGuinness, R., Hollows, F. C., Tibbs, J. & Campbell, D. 1972, ‘Labrador kera topathy in Australia’, Medical Journal of Australia, vol 2: 1248-1250

McKenzie, K. 1995, Visual impairment in a rural New South Wales community: an analysis of Bourke District Hospital outpatient eye clinic data 1985-1995, Master of Public Health thesis, University of New South Wales, Sydney.

McKinnon M. J. 1997, Comparison of non-mydriatic camera system and fundoscopy by ophthalmologist for diabetic retinopathy screening in Aboriginal communities in the Pilbara, Thesis, Curtin University of Technology.

Meredith, S. J., Peach, H. G. & Devanesen, D. 1989, ‘Trachoma in the Northern Territory of Australia, 1940 – 1986’, Medical Journal of Australia, vol. 151, no. 4, pp. 190–6.

Merianos, A., Mulvaney, G. & Jayathissa, S. 1991, ‘Outbreak of non-sexually transmitted gonococcal conjunctivitis in Central Australia, 31 January to 6 June 1991’, Communicable Diseases Intelligence, vol. 15, no. 16, pp. 264-266.

Moore, M.C., Howarth, W.H., Wilson, K.J., Derrington, A.W. & Surman, P.G. 1965, ‘Clinical and laboratory assessments of trachoma in South Australia’, Medical Journal of Australia, vol. 2, p. 441

Moore, S. 2002, ‘Kimberley WA project: servicing blind and vision impaired people in a remote area’, Aboriginal and Islander Health Worker Journal, vol. 26, no. 3, pp. 10-11. 173 Moran, D. J. & Hollows, F. C. 1984, ‘Pterygium and ultraviolet radiation: a positive correlation’, British Journal of Ophthalmology, vol. 68, no. 5, pp. 343-6.

Murchland, J. B. & Edwards, F. M 1975, ‘Anterior chamber depth of eyes of full blood Aborigines at a reserve in South Australia’, Australian Journal of Ophthalmology, vol. 3, no. 1, pp. 56-58.

National Aboriginal Health Strategy Working Party 1989, A National Aboriginal Health Strategy: Report of the National Aboriginal Health Strategy Working Party, Australian Government Publishing Service, Canberra, viewed 22 May 2010,

National Aboriginal Community Controlled Health Organisation & Couzos, S. & Taylor, H. 2005, ‘Eye health’, in Evidence base to a preventive health assessment in Aboriginal and Torres Strait Islander peoples, Royal Australian College of General Practitioners, South Melbourne, pp. 66 – 77.

National Aboriginal Community Controlled Health Organisation 2005, ‘Eye health’, in National guide to a preventive health assessment in Aboriginal and Torres Strait Islander peoples, Royal Australian College of General Practitioners, South Melbourne, pp. 18 – 9.

National Health and Medical Research Council 2008, Risk factors for eye disease and injury. Literature review, pre pared for the NHMRC by Biotext Pty Ltd, NHMRC, Canberra, viewed 10 August 2010,

National Indigenous Eye Health Survey 2009, Minum Barreng (Tracking Eyes), Centre for Eye Research Australia, Melbourne, viewed 6 July 2010,

National Trachoma and Eye Health Program 1982, ‘Current Topics: The National Trachoma and Eye Health Program’, Aboriginal Health Project information bulletin, no. 1, p. 4.

Newlands H (1993) ‘Trachoma: control or eradication in central Australia’ Central Australian Rural Practitioners Association Newsletter, vol. 7, p. 22.

Nganampa Health Council & Christian Blind Mission International 2006, Environmental health landscaping and trachoma prevention, presented at the Vision 2020Australia Member Forum, July 2006, Adelaide, viewed 7 June 2010,

No rthern Territory Trachoma Control and Eye Health Committee Inc. 1985, Annual Report, NTTCEHC, Darwin.

Northern Territory Trachoma Control and Eye Health Committee Inc. 1990, Biennial Report July 1988-June 1990, NTTCEHC, Darwin.

Northern Territory Trachoma Control and Eye Health Committee Inc. 1992, Biennial Report July 1990-June 1992, NTTCEHC, Darwin.

Northern Territory Aboriginal Eye Health Committee Inc. 1996, Tri annual report July 1992 - June 1995, NTAEHC, Darwin.

Oce for Aboriginal and Torres Strait Islander Health 2001, Specialist eye health guidelines for use in Aboriginal and Torres Strait Islander populations, Department of Health and Aged Care, Commonwealth of Australia, viewed 8 June 2010,

Parish, D. 1999, 'The eye mob comin': eye health services to Aboriginal people in the Northern Territory 1982-1998, Northern Territory Aboriginal Eye Health Committee, Darwin.

Paterson, B. 1992, ‘An outbreak of Haemophilus in uenzae conjunctivitis: Katherine Region, Northern Territory’, Communicable Diseases Intelligence, vol. 16, no. 9, pp. 183-6.

Paterson, B. 2002, ‘Trachoma: new problem or old dilemma?, Northern Territory Disease Control Bulletin, vol. 9, no. 2, pp. 1-5.

Paterson, B., Ruben, A. & Nossar, V. 1998, ‘School screening in remote Aboriginal communities - results of an evaluation’, Australian and New Zealand Journal of Public Health, vol. 22, no. 6, pp. 685-9.

Peach H., Piper S., Devanesen D., Dixon B., Jeeries C., Braun P., Nelson D., Kruger G. & Boulden H. 1987, ‘Trial of antibiotic eye drops for the prevention of trachoma in school-age Aboriginal children’ Annual Report: Menzies School of Health Research 1986-87: 74-76

Peterson , J. & Treadway, G. 1998, ‘Impact of community-based azithromycin treatment of trachoma on carriage and resistance of Streptococcus pneumoniae’ [letter], Clinical Infectio us Diseases, vol. 26, no. 1, p. 248.

Piper, S., Peach, H. & Devanesen, D. 1986, Trachoma in the Northern Territory of Australia 1940-1986 Menzies School of Health Research and Northern Territory Trachoma Control and Eye Health Committee Inc, Darwin.

Platt, E. 1999, ‘Trachoma control program’, Kimberley Public Health Bulletin, vol. 18, pp. 10-11.

Porter, M., Mak, D., Chidlow, G., Harnett, G. B. & Smith, D. W. 2008, ‘The molecular epidemiology of ocular Chlamydi a trachomatis infections in Western Australia: implications for trachoma control’, The American Journal of Tropical Medicine and Hygiene, vol. 78, no. 3, pp. 514-7.

Prost, A. & Negrel. A. D. 1989, ‘Water, trachoma and conjunctivitis’, Bulletin of the World Health Organization, vol. 67, no. 1, pp. 9-18.

Reddy, V. 2005, Epidemiology and Treatment of Eye Disease ~ The Cape York Regional Eye Health Programme (1999-2004), Master of Public Health thesis, University of Queensland.

Roberts, D., Gracey, M. & Spargo, R. 1988, ‘Growth and morbidity in children in a remote Aboriginal community in north-west Australia’, Medical Journal of Australia, vol. 148 pp. 68-71.

Roper, K. 2007, ‘Trachoma: new advances in treatment’, The Northern Territory Disease Control Bulletin, vol. 14, no. 4, p. 24.

Roper, K., Michel, C. C., Kelly, P. M., Taylor, H. R. 2008, ‘Prevalence of trachoma in Aboriginal communities in the Kat herine Region of the Northern Territory in 2007’ [letter], Medical Journal of Australia, vol. 189, no. 7, p. 409.

175 Roper, K. G. & Taylor, H. R. 2009, ‘Comparison of clinical and photographic assessment of trachoma’, British Journal of Ophthalmology, vol. 93, no. 6, pp. 811-4.

Rubin, T., Franklin, R., Scarr, J. & Peden, A. 2008, Facilities, Programs and Services for the Water Safety of Aboriginal and Torres Strait Islanders in Rural and Remote Australia, Issues paper, Australian Water Safety Council, Sydney, viewed 7 July 2010

Schlenther, G., Tahhan, N., Stretton, S. & Layland, B. 2006, ‘Aboriginal Eye care: A Review of Services in NSW’, Aboriginal and Islander Health Worker Journal, vol. 30, no. 3, pp. 7–8.

Schultz, R., Coey, C., Krause, V., Taylor, H. & Currie, B. 2007, ‘Treatment of trachoma in small babies’, The Northern Territory Disease Control Bulletin, vol. 14, no. 4, pp. 22-3.

Slade, J. H. 1976, ‘Aboriginal eye health’, Australasian Nurses Journal, vol. 4, no. 1. p.10.

Smith, A. R., O'Hagan, S. B., Gole, G. A. 2006, ‘Epidemiology of open - and closed - globe trauma presenting to Cairns Base Hospital, Queensland’, Clinical and Experimental Ophthalmology, vol. 34, no. 3, pp. 252-9.

Stevens, M. P., Tabrizi, S. N., Muller, R., Krause, V., & Garland, S. M. 2004, ‘Characterization of Chlamydia trachomatis omp1 genotypes detected in eye swab samples from remote Australian communities’, Journal of Clinical Microbiology, vol. 42, no. 6, pp. 2501-7.

Stocks, N. 1992, Trachoma and visual impairment in the Anangu Pitjantjatjara of South Australia, Doctor of Medicine thesis, University of Adelaide, South Australia.

Stocks, N., Newland, H. & Hiller, J. 1994, ‘The epidemiology of blindness and trachoma in the Anangu Pitjantjatjara of South Australia’, Medical Journal of Australia, vol. 160, no. 12, pp. 751-6.

Stocks, N., Hiller, J. E., Newland, H. & M cGilchrist, C. A. 1996, ‘Trends in the prevalence of trachoma, South Australia, 1976 to 1990’, Australian and New Zealand Journal of Public Health, vol. 20 no. 4, p. 375-81.

Stocks, N., Hiller, J. E. & Newland, H. 1997, ‘Visual acuity in an Australian Aboriginal population’, Australian and New Zealand Journal of Ophthalmology, vol. 25, no. 2, pp. 125-31.

Street, J. M., Braunack-Mayer, A. J., Facey, K., Ashcroft, R. E. & Hiller J. E. 2008, ‘Virtual community consultation? Using the literature and weblogs to link community perspectives and health technology assessment’, Health Expectations, vol. 11, no. 2, pp. 189-200.

Tamblyn, D. 1984, ‘Aboriginal eye problems’, Australian Family Physician, vol. 13, no. 2, pp. 112-3.

Taylor, H. 1977, ‘Blindness in Australian Aborigines’, Australian Journal of Ophthalmology, vol. 5, no. 3, pp. 155-7.

Taylor, H. 1997, Eye Health in Aboriginal and Torres Strait Islander Communities, OATS IHS, Canberra.

Taylor, H. 1980, ‘Studies on the tear lm in climatic droplet keratopathy and pterygium’, Archives of Ophthalmology, vol. 98, no. 1, pp. 86-8.

Taylor, H. 1980, ‘Prevalence and causes of blindness in Australian Aborigines’, Medical Journal of Australia, vol. 1, no. 2, pp. 71-6.

176 Taylor, H. 1980, ‘The prevalence of corneal disease and cataracts in Australian Aborigines in north-western Australia’, Australian Journal of Ophthalmology, vol. 8, no. 4, pp. 289-301.

Taylor, H. 1980, ‘Aetiology of climatic droplet keratopathy and pterygium’, British Journal of Ophthalmology, vol. 64, no. 3, pp. 154-63.

Taylor, H. 1980, ‘The environment and the lens’, British Journal of Ophthalmology, vol. 64, no. 5, pp. 303-10.

Taylor, H. 1981, ‘Racial v ariations in vision’, American Journal of Epidemiology, vol. 113, no. 1, pp. 62-80.

Taylor, H. 1981, ‘Climatic droplet keratopathy and pterygium’, Australian Journal of Ophthalmology, vol. 9, no. 3, pp. 199-206.

Taylor, H. R. 1987, ‘Strategies for the control of trachoma’, Australian and New Zealand Journal of Ophthalmology, vol. 15, no. 2, pp. 139-43.

Taylor, H. 1995, ‘Blindness and trachoma in South Australia’ [letter], Australian and New Zealand Journal of Ophthalmology, vol. 23, no. 3, p. 251.

Taylor, H. 1996, ‘Reply’ [letter] Australian and New Zealand Journal of Ophthalmology, vol. 24, no. 2, p. 162.

Taylor, H. 1998, ‘Trachoma-Its Relevance in Central Australia Today’, CARPA Newsletter, issue 28, Alice Springs.

Taylor, H. & Lansingh, V. 1999, ‘Azithromycin: a new era for trachoma elimination?’ Tracking Trachoma, WHO Geneva, vol. 2, issue 2, pp. 1-2, viewed 15 August 2010

Taylor, H. 2001, ‘Trachoma in Australia’, Medical Journal of Australia, vol. 175, no. 7, pp. 371-2.

Taylor, H. 2001, ‘A trachoma perspective’, Ophthalmic Epidemiology, vol. 8, no. 2-3, pp. 69-72.

Taylor, H. 2002, ‘Flies and trachoma’, Clinical and Experimental Ophthalmology, vol. 30, no. 2, p. 65.

Taylor, H. 2005, ‘Diabetic retinopathy’, Clinical and Experimental Ophthalmology, vol. 33, no. 1, pp. 3-4.

Taylor, H. 2008, Trachoma : a blinding scourge from the Bronze Age to the twenty- rst century, Centre for Eye Research Australia, Melbourne. Taylor, H. 2009, ‘Trichiasis: out of mind, out of sight’ [letter], Australian Journal of Rural Health, vol. 17, no. 3, p. 171.

Taylor, H. 2010, ‘Surveys and service: what is going on in the Centre?’, Clinical and Experimental Ophthalmology, vol. 38, no. 4, pp. 331-2.

Taylor, H., Hollows, F. C. & Moran, D. 1977, ‘Pseudoexfoliation of the lens in Australian Aborigines’, British Journal of Ophthalmology, vol. 61, no. 7, pp. 473-5.

Taylor, H., Robin, T. A., Lansingh, V. C., Weih, L. M. & Keee, J. E. 2003, ‘A myopic shift in Australian Aboriginals: 1977-2000’, Transactions of the American Ophthalmological Society, vol. 101, pp. 107-10, viewed 7 June 2010

177 Taylor, H. R. & Wright, H. R. 2006, ‘Dip-stick test for trachoma control programmes’, The Lancet, vol. 367, no. 9522, pp. 1553-4.

Taylor, H. & Gruen, R. 2009, Diabetic retinopathy: accuracy of screening methods for diabetic retinopathy: a systematic review, Indigenous Eye Health Unit, Melbourne School of Population Health, viewed 25 May 2010,

Taylor, H., Fox, S. S., Xie, J., Dunn, R. A., Arnold, A. L. & Keee, J. E. 2010, ‘The prevalence of trachoma in Australia: the National Indigenous Eye Health Survey’, Medical Journal of Australia, vol. 192, no. 5, pp. 248-53.

Taylor, H., Xie, J., Arnold, A.-L., Goujon, N., Dunn, R. A., Fox, S. & Keee, J. 2010, ‘Cataract in indigenous Australians: the National Indigenous Eye Health Survey’, Clinical & Experimental Ophthalmology, no. doi: 10.1111/j.1442-9071.2010.02337.x

Taylor, K. I. & Taylor, H. 1999, ‘Distribution of azithromy cin for the treatment of trachoma’, British Journal of Ophthalmology, vol. 83, no. 2, pp. 134-5.

Tebbutt, C. 2005, ‘One millionth order authorised through the NSW government's free spectacles program’, Aboriginal and Islander Health Worker Journal, vol. 29, no. 2, p. 4.

Tedesco, L. R. 1980, ‘Trachoma and environment in the Northern Territory of Australia’, Social Science and Medicine, vol. 14D, pp. 111-7.

Tellis, B., Dunn, R., Keee, J. & Taylor, H. 2007, Trachoma surveillance report 2006, National Trachoma Surveillance and Reporting Unit, Centre for Eye Research Australia, viewed 26 May 2010,

Tellis, B., Dunn R., Keee, J. & Taylor, H. 2008, Trachoma surveillance report 2007, National Trachoma Surveillance and Reporting Unit, Centre for Eye Research Australia, viewed 26 May 2010,

Tellis, B., Fotis, K., Dunn, R., Keee, J. & Taylor, H. 2009, Trachoma Surveillance report 2008, National Trachoma Surveillance and Reporting Unit, Centre for Eye Research Australia, viewed 3 Nov 2009,

Thew, M. R. & Todd, B. 2008, ‘Fungal keratitis in far north Queensland, Australia’, Clinical and Experimental Ophthalmology, vol. 36, no. 8, pp. 721-4.

Tilmouth, T. & Briscoe, J. 1984, ‘Trachoma and oily tetracycline eye drops’ [letter], Medical Journal of Australia, vol. 1, p. 119.

Tourky, A. A. 1998, Vision screening of Aboriginal and Torres Strait Islander children in Far North Queensland, Doctor of Philosophy thesis, University of Queensland, Brisbane, Queensland.

Turner, B. 1989, ‘Trachoma in the Northern Territory, 1946-1986’, Medical Journal of Australia, vol. 151, p. 727.

Turner, J. & Avery, E. 2006, ‘Diabetes health in East Arnhem Land - from the feet up’, Aboriginal and Islander Health Worker Journal, vol. 30, no. 1, pp. 21-3.

178 Van Buynder, P., Talbot, J. & Graham, P. 1992, ‘Trachoma in Australian Aboriginals in the Pilbara’ [letter], Medical Journal of Australia, vol. 156, p. 811.

Van Buynder, P., Bailey, S. & Adams, J. 1992, ‘A cluster of non-sexually transmitted gonococcal conjunctivitis in the Pilbara, Western Australia’, Communicable Diseases Intelligence, vol. 16, pp. 534-6.

Van Minnen, K., Spilsbury, K., Ng, J., Morlet, N., Xia, J. & Semmens, J. 2009, ‘Changing patterns of access to cata ract surgery: A population study spanning 22 years’, Health & Place, vol. 15, no. 1, pp. 394-8.

Veale, B. 2002, ‘The eyes have it!’, Australian Family Physician, vol. 31, no. 3, p. 215. Vision 2020 Australia n.d., World Sight Day Information Sheet, viewed 7 June 2010, http://www.vision2020australia.org.au/assets/content/1308/WSD-Fact-Sheet-Aust-ATSI.pdf

Vision 2020 Australia 2007, Aboriginal and Torres Strait Islander Eye Care Information Sheet, viewed 7 June 2010,

Vision 2020 Australia 2007, Trachoma Information Sheet, viewed 7 June 2010,

Wallace, T. 1996, Evaluation of a trachoma treatment program in the Katherine Region of the Northern Territory, Master of Public Health thesis, University of Western Australia, Perth, Western Australia.

Wallace, T. 1996, ‘Trachoma treatment program in the Katherine region’ Northern Territory Co mmunicable Diseases Bulletin, vol. 3, no. 4, pp. 13-15.

Wallace, T. 1997, ‘Control and treatment of active trachoma in the Northern Territory’ Northern Territory Communicable Diseases Bulletin, vol. 4, no. 1, pp. 16-17.

Wang, J. 2002, ‘Closing the gaps between urban and rural eye health and eye care services’, Clinical and Experimental Ophthalmology, vol. 30, no. 5, pp. 313-4.

Waterford, J. 2008, ‘Boots on the ground cannot replace faces in a community’, Eur eka Street, vol. 18, no. 1, pp. 4-7.

Wearne, S. M. 2007, ‘Remote Indigenous Australians with cataracts: they are blind and still can’t see’, Medical Journal of Australia, vol. 187, no. 6, pp. 353-6.

Webb, S. 1990, ‘Prehistoric eye disease [trachoma?] in Australian Aborigines’, American Journal of Physical Anthropology, vol. 81, pp. 91-100.

Weinstein, P. 1991, ‘The Australian bush y [Musca vetustissima Walker] as a vector of Neisseria gonorrhoeae con junctivitis’ [letter], Medical Journal of Australia, vol. 155, p. 717.

Wildsoet, C. F. & Wood, J. M. 1996, ‘Primary eye care needs and services to Aboriginal and Torres Strait Islander populations across Queensland: a 'users' perspective’, Clinical & Experimental Optometry, vol. 79, no. 5, p. 188-201.

Wildsoet, C. F. & Wood, J. M. 1996, ‘Primary eye care needs and services to Aboriginal and Torres Strait Islander populations across Queensland: a 'users' perspect ive’, Clinical & Experimental Optometry, vol. 79, no. 5, p. 188-201.

179 Wildsoet, C. F., Wood, J. M. & Hassan. S. 1998, ‘Development and validation of a visual acuity chart for Australian Aborigines and Torres Strait Islanders’, Optometry and Vision Science, vol. 75, no. 11, pp. 806-12. Winch, J. 1993, ‘Trachoma: Environmental Health and Prevention Issues’, Aboriginal and Islander Health Worker Journal, vol. 17, no. 2, pp. 5-7.

Wood, J. & Wildsoet, C. F. 1996, ‘Optometric services to Aboriginal and Torres Strait Islander comm unities throughout Queensland’, Clinical and Experimental Ophthalmology, vol. 79, no. 6, pp. 215-26.

Wood, J. M. & Patterson, C. M. 1999, ‘Diabetes and diabetic retinopathy in Indigenous Australians’, Clinical and Experimental Optometry vol. 82, no. 2-3, pp. 80-83.

Wright, H. R. & Taylor, H. R. 2005, ‘Clinical examination and laboratory tests for estimation of trachoma prevalence in a remote setting: what are they really telling us?’ The Lancet Infectious Diseases, vol. 5, no. 5, pp. 313-20.

Wright, H. R, Keee, J. E. & Taylor, H. R. 2006, ‘Trachoma and the need for a coordinated community-wide response: a case-based study’, PLoS Medicine, vol. 3, no. 2, e41, viewed 7 July 2010,

Wright, H. R., Keee, J. E. & Taylor, H. R. 2009, ‘Trachoma, cataracts and uncorrected refractive error are still important contributors to visual morbidity in two remote indigenous communities of the Northern Territory, Australia’, Clinical & Experimental Ophthalmology, vol. 37, no. 6, pp. 550-7.

Yohendran, J. & Yohendran, K. 2004, ‘Review of Australian indigenous eye health research published in the last decade’, Clinical and Experimental Ophthalmology, vol. 32, no. 4 , pp. 450-1.

180

Contact Professor Hugh R. Taylor AC, Indigenous Eye Health Unit, Melbourne School of Population Health, The University of Melbourne, Level 5, 207 Bouverie St, Carlton, Victoria 3053 Website: www.iehu.unimelb.edu.au

Authorised by the Harold Mitchell Chair of Disclaimer Statement on privacy policy Indigenous Eye Health, Melbourne School of The University has used its best endeavours When dealing with personal or health Population Health. to ensure that material contained in this information about individuals, the University publication was correct at the time of of Melbourne is obliged to comply with the Copyright printing. The University gives no warranty Information Privacy Act 2000 and the Health © Copyright University of Melbourne 2011. and accepts no responsibility for the Records Act 2001. Copyright in the publication is owned by the accuracy or completeness of information and University and no part of it may be the University reserves the right to make Intellectual Property reproduced without the permission of the changes without notice at any time in its For further information refer to: University. absolute discretion. www.unimelb.edu.au/Statutes