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Project Report:

The Celebrating Aboriginal and Torres Strait Islander Carers Initiative (CATSICI).

Author:

Ken Lee, Coordinator, Strategic Programs Disability and carers, Northern NSW Local Health District.

Summary This Initiative was to demonstrate the NNSWLHD’s commitment to Aboriginal and Torres Strait Islander People living on the North Coast with a caring role commensurate with the NSW Carers Charter. This initiative was originally funded by the former Department of Health under the NSW Carers Action Plan 2007-12. A reprint and second distribution of the associated resources was funded and facilitated by Alzheimers Australia in October 2013. Objectives: Aboriginal and Torres Strait Islander people with a caring role rarely identify with the term “carer” or utilise the services that are available to assist people with a caring role. The aims of this initiative were to provide opportunities for communities to raise the profile of Aboriginal carers and the services that provide support to carers in their communities. Method: Yarn ups were facilitated with the assistance of key community members to discuss the issue of caring and to develop a service information resource to celebrate and assist carers. Results: More than 50 community members from two communities contributed to the development of printed resources to assist local Aboriginal and Torres Strait Islander people with a caring role. Conclusion: The results of the evaluation indicated that participating in the project allowed for reflection on the caring role and carers in the community. Participants also said that the service information resources were useful. Keywords: Aboriginal, Torres Strait Islander, carers, caring, Minjungbal, Muli Muli, Initiative, CATSICI. Revised: June 2014

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Index Title page, Summary, 1 Index 2 Background, Description, Aims 3 Consultation and Yarn ups 4 Outcomes, Example of poster developed 5 Discussion, Conclusions 6 Other Considerations, Acknowledgements 7 Committee Membership, 8 Evaluation/Results Muli Muli 9 Evaluation/Results Minjungbal 10 Example of Calendar Developed 11

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Background: In key stakeholder discussions, it became evident that Aboriginal and Torres Strait Islander People with a caring role, rarely identified as a “carer,” and rarely sought assistance from the services and supports available to carers. “Caring is just a part of us,” was a common theme that emanated from communities across the North Coast of NSW. It was not considered out of the ordinary despite an acknowledgement of impact on other of life’s opportunities. However, it was identified that community members with a caring role would benefit from extra assistance to reduce some of the risks to their own personal health experienced when looking after their loved ones. “Carers are to be acknowledged and recognised as having their own individual needs within and beyond their caring role. This acknowledgement and recognition is to take into consideration Aboriginal or Torres Strait Islander culture, age, disability, religion, socio-economic status, cultural differences, gender identification and place of residence” NSW Carers Charter. Raising the profile of “hidden carers,” in particular; Aboriginal and Torres Strait Islander Carers is also a key priority of the NSW Carers Action Plan 2007-2012. It is well recognised that if carers are supported to be successful in their caring role, they are less likely to require the assistance of acute inpatient services for themselves or the care recipients. The NCAHS Carers Action Plan Implementation Committee (CAPIC) and the Carers Program (CP) invited key stakeholders from the services that provide support to Aboriginal Carers, as well as some carers representatives, to form a Sub-Committee to assist with the CAPIC and CP to develop an initiative to raise the profile of Aboriginal and Torres Strait Islander carers and the services that provide assistance to Indigenous carers on the North Coast. What culminated was the “Celebrating Aboriginal and Torres Strait Islander Carers Initiative” (CATSICI). Description: The CATSICI consisted of a pilot project in two Indigenous communities. The communities included the Muli Muli community, a remote community in Githubal country near Woodenbong, and the Aboriginal and Torres Strait Islander community of Tweed Heads and surrounding areas, an urbanised community in Bundjulung country. The CP would take the lead responsibility to implement the business of the CATSICI under the guidance of the CAPIC and the stakeholder sub-committee. Aims: The project aimed:

1. To provide the community members with an opportunity to come together to discuss the caring role; and

2. To provide the opportunity for community members to develop a useful

resource for carers with information about health services and the services to assist them in their caring role.

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Consultation and Yarn ups: Key stakeholders from services that support Aboriginal carers, as well as Carers Representatives, were invited to join a steering committee to oversee the development of strategies to raise the profile of Aboriginal and Torres Strait Islander Carers on the North Coast. These strategies became the Celebrating Aboriginal and Torres Strait Islander Carers Initiative (CATSICI). Taking into account the parameters of the resources the number and diversity of the Aboriginal communities and services across the North Coast, the Steering Committee decided that it would be impossible to engage all of the communities and develop a resource to benefit the entire target group. It was decided that it would be better to concentrate the resources into two smaller pilot projects. Communities were considered for their diversity and willingness to participate. The Committee invited the Muli Muli and Aboriginal and Torres Strait Islander community of Tweed Heads communities to participate in the pilot projects. The Muli Muli community is comprised of Githabul People. It is an inland freshwater community that is comparatively isolated from a major centre and services. The Aboriginal and Torres Strait Islander community of Tweed Heads community and is comprised of Bundjalung, Torres Strait and South Sea Islander People. It is a salt water community situated on the more densely populated Tweed coast. An Aboriginal Health Impact Statement was submitted. The initiative was presented to the Ngayundi Aboriginal Health Council and supported to proceed. The Aboriginal Health Strategic Development and Performance Coordinator provided cultural supervision throughout the project. In both communities, CATSICI was introduced at community meetings. The Muli Muli Women’s Group hosted a discussion at Muli Muli and there was a morning tea arranged at Minjungbal Aboriginal Cultural Centre. Elders and other community members that were unable to be present at the yarn ups and discussions were consulted individually or at other community functions. Outcomes: From the discussions and yarn ups amongst members of the Aboriginal and Torres Strait Islander community of Tweed Heads, the need for information to assist carers in their role was highlighted. It was decided that the best way to convey this was through a poster that contained information about services that support carers. The poster should be “attractive to Aboriginal People” and be placed in strategic locations to benefit all Aboriginal and Torres Strait Islander People who live on the Tweed Coast. At the meetings, it was also highlighted that carers need information readily available to assist them at home. It was proposed that a calendar that contained helpful information be developed. People felt that a calendar would be placed in the home somewhere where the information would then be readily accessible.

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The People from the Muli Muli community liked the idea of a poster at key locations in the community and neighbouring towns. The idea of a booklet called, “Important dates to remember by the seasons” was adopted instead of a calendar as a platform to provide information to assist carers in their homes. See example on page 12.

This is a small scale example of one of the posters that now appears in hospital wait rooms, GP clinics, Aboriginal Health Posts and other service provider reception areas.

Discussion: The consultations and yarn ups with the community members can be seen to have been of benefit to carers from these two communities in more ways than one. The resources that were developed could have an enduring role in raising the profile of the services to help carers and the meetings put the topic of “lets think about our carers for a moment,” on the table.

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“Caring is a part of us” was a statement that ruminated through the yarn ups when the issue of “what is the caring role” was discussed. Participants agreed that it was “difficult to separate the caring role from all of the other roles in life. “It’s just a part of us.” Hereby, the term “carer” needed to be clarified regularly in relation to what it referred to in the context of the initiative. The development of the posters, calendar and booklet raised many issues of a sensitive nature that may have had implications on the success of this initiative. These included; the use of traditional language, the use of local artwork, photographs of people and totems. Community members in both communities were very clear that they wanted these resources to be valued and utilised by all community members. Several drafts were developed for the the community members, CATSICI Steering Committee and the relevant service providers, for review prior to going to print. Natural events such as plants flowering and animal’s migration were adopted to depict the seasons. There was a shared understanding that the more representative local life the resources were, the more that they would be valued. This project was implemented with the acknowledgement that the “caring role” is generally less defined or politicised for Aboriginal and Torres Strait Islander people and that Aboriginal and Torres Strait Islander people are less likely to access resources that are sometimes available to support them in their caring role (Jenkins and Seith, 2004). It was also acknowledged that Aboriginal and Torres Strait Islander Carers experience a higher rate of personal health issues than their non-Aboriginal counterparts, and that this adds to the burden of caring for these people (Cummins 2007). With the Aboriginal and Torres Strait Islander community of Tweed Heads and Muli Muli communities celebrating and having a resource to assist carers, it is hoped that the pressure that might lead to the development of personal health problems, is minimised, allowing for improved carer health to care for their loved ones. Conclusions: The evaluation results on page 8-9 of this report indicate that this initiative was successful in achieving its aims. The results indicated that participating in the project made people think more about the caring role and carers in the community. Participants also indicated that the service information contained in the resources was useful. Given the positive response to the two pilot initiatives by carers, the success of the implementation approach that was incorporated and the relative small cost associated, further resourcing to implement the initiative in other willing communities, would be money well spent. Since the initial publication of the resources, Alzheimer’s Australia (AA) collaborated to fund a re-print. Minor adjustments were made to include the AA logo. Other considerations: In working with the Aboriginal and Torres Strait Islander community of Tweed Heads and Muli Muli communities, it was important to demonstrate respect for Elders past and present, land, totems, social hierarchy and religion. It was important to maintain an acute awareness of the history of relations between Indigenous and Non-

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Indigenous Australians and the atrocities committed by the services and staff that have purported to provide help in the past. It was also important to ensure that the impetus for the project activity was not based on assumptions but on the stated wishes of community members. For me, a Non-Indigenous public servant, it was essential that “I could be trusted.” I needed to reflect to the community members more of who I was as a person than what my job title was and understand that the more time I spent just “being,” the more efficient I became in my role. I needed to reorientate my business organisation away from the clock and move towards being sensitive to what was occurring in the community at the time. Acknowledgements: First, to acknowledge and show gratitude to the Traditional Owners and Elders, past and present, of the Githabul and Bundjalung Nations, where this initiative took place. The experience of working with the friendly and respectful people from Muli and Aboriginal and Torres Strait Islander community of Tweed Heads communities and the committee members on this positive project has been wonderful. Thanks to the service providers for assistance, Minjungbal Aboriginal Museum for the traditional seasonal knowledge and to Carl for his dedication and artwork. I’d particularly like to thank my key mentors; Lyndal Smith, Marvette Logan, Vicki Cora and Marion Close for their insights, guidance and cultural consultancy along the way. Ken Lee

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Committee Membership The Celebrating Aboriginal and Torres Strait Islander Carers Initiative Steering Committee (Stakeholder sub-committee) Aunty Gwen Hickling Aboriginal Hospital Liaison Officer Marvette Logan Branch Manager NC Aboriginal Home Care Service Anthony Franks Project Officer Population Health and Planning Virginia Paden Aboriginal Family Worker Lyndal Smith Aboriginal Health Strategic Development and Performance Coordinator Grahame Skinner Manager Aboriginal Health Richmond Network Kristy Narkle Community Options Aboriginal Case Manager Ken Lee Area Coordinator Carer Support Program Dianne Creighton ATSI HACC Access Worker Coordinator Dorothy Pholi Manager Clarence Valley Community Programs Laurel Rogers Aboriginal Health Promotion Officer

Participants at one of the launches of the new resources at the Minjungbal Aboriginal Cultural Centre

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Project evaluation (at 6 months post implementation). The Celebrating Aboriginal and Torres Strait Islander Carers Initiative Evaluation. Muli Muli (N=7) Thank-you for helping with this evaluation of the CATSICI. The information that you provide will be used to gauge the success of CATSICI against the aims of the initiative. There will be no personal identification information collected. Do you/have you looked after a family member, friend or neighbour or other community member with a disability, medical condition, mental illness, or frailty due to age? Yes (7) No (0) Did you participate in the development of the poster and booklet? Eg: group discussion, talk with the project officer, comment on the look or content of the poster and booklet of the Yes (6) No (0) If “Yes,” did this participation in the project make you think more about caring or carers in your community? Yes (5) No (1) Have you seen the CATSICI Poster? Yes (7) No (0)

Do you think that the information is useful? Yes (7) No (0) Do you have any other comments about the poster?

“It’s helpful to know where to get help.” “I think it’s good.” “It’s good to help people in this way.” Have you seen the “Important Dates to Remember by the Seasons” booklet for carers? Yes (7) No (0) Do you think that the information is useful? Yes (7) No (0) Do you have any other comments about the booklet?

“It’s good for the people who look after people.” “It helps the carers.” “I use it for checking what’s coming up.” “I like the pictures of the local scenes.” Thank-you, you participating in this evaluation.

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The Celebrating Aboriginal and Torres Strait Islander Carers Initiative Evaluation. Aboriginal and Torres Strait Islander community of Tweed Heads (N=8) Thank-you for helping with this evaluation of the CATSICI. The information that you provide will be used to gauge the success of CATSICI against the aims of the initiative. There will be no personal identification information collected. Do you/have you looked after a family member, friend or neighbour or other community member with a disability, medical condition, mental illness, or frailty due to age? Yes (7) No (1) Did you participate in the development of the poster and booklet? Eg: group discussion, talk with the project officer, comment on the look or content of the poster and booklet of the Yes (6) No (2) If “Yes,” did this participation in the project make you think more about caring or carers in your community? Yes (6) No (0) Have you seen the CATSICI Poster? Yes (8) No (0) Do you think that the information is useful? Yes (8) No (0) Do you have any other comments about the poster? “The artwork is very good.” “I like the look of it” “It has good information.” “It’s good.” “It helps the carers.” Have you seen the “Important Dates to Remember by the Seasons” booklet for carers?

Yes (8) No Do you think that the information is useful? Yes (8) No Do you have any other comments about the booklet? “Again, the artwork is very good.” “Do you have any more of them?” “It is good for the important dates too.” “It helps people to know what services are available to help them locally.” “I have one at my house and I put all of my families birthdays in it.” Thank-you, you participating in this evaluation.

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Bibliography Aboriginal Carers Project Report 2009-2010 for Mental Health Carers ARAFMI NSW A Report on a Project to Better Support ATSI carers on the Central Coast Article | February 28, 2012 ABS (2009) Survey of Disability, Ageing and Carers Australian Institute of Health and Welfare, The health and welfare of Australia’s Aboriginal and Torres Strait Islander people, an overview 2011, 2011, Author: Canberra. Carers Australia: http://www.carersaustralia.com.au/about-carers/aboriginalandtorresstraitislandercarers/ Cummins, Robert A, ‘Special Report: The Wellbeing of Australians - Carer Health and Wellbeing', Australian Unity Wellbeing Index Survey 17.1, Report 17.1, October 2007 NSW Carers Action Plan 2008-12 NSW Carers (Recognition) Act 2010 NNSW LHD Carers Action Plan 2011-12 NSW Department of Health Caring Together building Sustainability. (A report on the progress of the implementation of the Government’s response to the Commissioner Peter Garling’s Final Report) Monitoring our Progress, (2009) pp47 SA State Carers Policy: Background Paper on Aboriginal Carers Written by: Dr Stephen Jenkins and Francesca Seith from Human Services Reform Branch in the Department of Human Services Published by: State Government of South Australia (Unpublished)

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