Australia’s Brain Injury Organisation ANNUAL REVIEW 2022–23
OUR VISION
Rethink brain injury. Change society.
OUR MISSION
Ensure the rights of people impacted by brain injury by connecting knowledge, policy, services and systems.
OUR VALUES
We listen to understand. We build relationships. We are courageous. We are here for each other. We are creative.
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The Synapse community journey
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Our board
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Court Link
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Breaking the cycle of vulnerability
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Wurri-Wurri Outreach
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Brain injury facts and figures
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Peer support groups
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National reach
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Ageing services
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Services snapshot
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Housing
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Research
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Research Synapse and AUS-mTBI
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Our team
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Financial summary
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Recognising brain injury after domestic and family violence
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Understanding the impact of a brain injury in the criminal justice system
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Changing correctional system outcomes for people with a brain injury
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Failure in guardianship leaves individuals disempowered
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Voices from the Torres Strait Islands
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Our partners
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Support and innovate
CEO’s message
Sustainability
Advocate with impact
Synapse overview
Contents
Acknowledgement of Country We respectfully acknowledge the traditional custodians of the lands, seas and waterways upon which we provide services. We pay our respects to the Elders, past, present and future, and commit to working side by side.
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AUSTRALIA’S BRAIN INJURY ORGANISATION
CEO’s message Synapse’s vision is to ‘rethink brain injury and change society’. Our commitment to this vision is ambitious and unwavering.
At our core is community: We exist for community. We are made up of community. We have an obligation to community; it is our core. All our efforts are focused on achieving the vision through our strong strategic plans, and a culture of collaboration, partnership, and accountability. Every day we keep building our connections to the individuals, families, communities, and organisations that help us learn. Their stories are our stories. We are a part of a community of discovery – one that drives us to listen intensively and engage. This year, we’ve completed many important projects and built partnerships that address many issues that often lead to people impacted by a brain injury coming into contact with the criminal justice system or domestic family violence. Through the Disability Royal Commission, Synapse has been advocating for people impacted by a brain injury by making submissions and giving evidence, including: • gathering stories from the Torres Strait Islands to ensure the voices of Torres Strait Islander communities were heard in the commission • responding to the First Nations Issue Paper • providing evidence in public hearings about: 1. conditions in criminal justice system 2. disability service provision 3. Guddi Way Screen 4. Synapse’s Community Living Initiative.
In the past year, Synapse has participated in research and continued to grow our relationships with our university partners and stakeholders from across domestic and family violence services and with people impacted by domestic and family violence. This year, Synapse expanded our grants, screening, and training related to the criminal justice system. Over the past year, Synapse has been supporting participants in the Court Link program in Cairns to uphold their court requirements. We also continue to expand the Guddi Way Screen program, which identifies cognitive impairment and needs within a culturally informed and validated process. We have been training different organisations about brain injury and its impact on people as they navigate the criminal justice system. We are incredibly thankful to our Synapse Board, which continues to be courageous with its support of the work we do. We also thank the extended Synapse family, including our partners, donors, and advocacy organisations for the significant part they play in helping us achieve our vision and make a difference in our communities across Australia. Our connections make and keep us strong. Thank you to every person, organisation, partner and community that generously shared their story. Jennifer Cullen Synapse CEO
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Our board Paul Watson Non-Executive Director Paul is a Director of Berrill & Watson Lawyers and an expert in superannuation and life insurance. For the past decade, Paul has delivered seminars and workshops for disability support groups, financial counsellors, and consumers with the aim of improving the lives of people with a disability, injury, or chronic illness. Paul is a member of the Consumer Law Committee of the Law Council of Australia and was awarded an Honorary Life Membership with Palliative Care Queensland for the support he provided to the organisation.
Paul Raciborski Non-Executive Director Paul experienced a severe brain injury as the result of a fall in 2003. Since then, he has strived to make a difference for others who have lived through similar experiences. Paul is a Disability Support Worker and supports people with mental health conditions and intellectual and physical disabilities. Before he acquired a brain injury, Paul held various positions in corporate project management and manufacturing.
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Greg Luck Non-Executive Director Greg is the Chief Executive Officer of AimBig, an organisation that provides disability employment and workforce services in more than 130 locations around Australia. With over 25 years’ experience in senior executive roles transforming businesses, Greg is an energetic, purpose- and values-based leader with experience in Australia, New Zealand, the Asia–Pacific, North America, South America, Europe, the Middle East and Africa. Greg has worked in public, private, and non-profit organisations. Greg has a Masters in Business Administration, a Bachelor in Vocational Education and Training, an engineering trade qualification, and is a Fellow of the CEO Institute and Member of the Australia Institute of Company Directors.
Hannah Hiscox Non-Executive Director Hannah is a chartered accountant and registered company auditor with more than 20 years’ professional experience. Currently a partner in the Audit and Assurances team at Grant Thornton Australia, Hannah audits a portfolio of charities registered with the Australian Charities and Not‑For‑Profits Commission. Hannah has a Bachelor of Business (Accounting) and a Graduate Certificate in Business (Philanthropy and Non-profit Studies).
Joe Capozza Non-Executive Director Joe has held leadership roles within the not-forprofit sector for over 20 years. Joe brings longterm experience in business strategy and practical hands-on experience. Joe has been CEO of a community housing association devoted to women escaping domestic and family violence, a national volunteer manager of a large children’s charity, as well as a director of volunteer services in a major public hospital setting. Joe was a board member of Volunteering SA&NT Inc. for over 10 years and has recently been appointed Deputy Chair of the Property Council of Australia (SA Division) Residential Committee. Joe is now Manager, Housing Strategy and Projects at Believe Housing Australia Ltd.
Ian Wilson Non-Executive Director Ian is a qualified accountant (CPA Fellow), a chartered company secretary, and has been a director of commercial and not-for-profit companies in Australia and overseas for over 30 years. Ian’s early career was mainly in the technology and finance industries before moving to senior management positions within the not-for-profit sector. Ian currently holds a finance role with The Florey, the largest brain research centre in the Southern Hemisphere, with teams of researchers dedicated to building knowledge on a range of neurological and psychiatric conditions.
Frances Quan Farrant Non-Executive Director Frances has worked in the community and disability sectors for two decades. As a social scientist and social worker, Frances has an extensive background in advocacy, policy, and disability rights, including expertise on the United Nations Convention on the Rights of Persons with Disabilities. Frances has represented disabled people at the United Nations in both Geneva and New York on many occasions. With a Bachelor of Arts from Macquarie University and a Master of Social Work from QUT, Frances is presently enrolled in a PhD at The University of Queensland researching the implementation of The Convention of the Rights of Persons with Disabilities in Australia and internationally.
Justin Hogg Company Secretary Justin is the founding director of the accounting firm Right Source. He has worked as an accountant in several industries where he managed teams responsible for billion-dollar business ventures, as well as working for charities. Through multiple leadership positions and business experience, Justin has an ability to communicate and relate to people from all walks of life. He is passionate about the notfor-profit sector and helping those who help others. Justin is also a company secretary for several other not-for-profit organisations.
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Breaking the cycle of vulnerability Brain injury can impact you at any stage of life. No two brain injuries are the same and how they affect each person can have far-reaching impact for those living with a brain injury and people supporting someone who has a brain injury. When a brain injury occurs, it can affect many things including cognitive functions. Brain injury can alter the life of a person and those close to them. Some of these impacts can amplify vulnerabilities and limit choices and self‑determination. Without the right support, knowledge, and opportunities at key milestones throughout life, people impacted by a brain injury can fall into a cycle of amplified vulnerability. The vulnerabilities experienced by people living with a brain injury are increased when government systems do not connect and integrate. People are often subjected to interventions that fail to recognise or adequately address and respect needs that result from injury and can change someone’s life trajectory.
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i or Sen
Synapse exists to break the cycle of vulnerability by connecting knowledge, policy, services, and systems for people living with a brain injury, their families, and their communities.
d l i Ch
Cycle-breaking
Our first cultural and social connections come from our family, extending to systems through life. The cycle of vulnerability can be broken by: • informed parental support • positive early health, social, and cultural connections • early intervention.
You ng Ad ul t
As we develop, stability can impact our wellbeing, feeding into many areas of life. The cycle of vulnerability can be broken by: • educational engagement and learning • positive cultural, social, and health connections • belonging and identity • employment and housing.
Vulnerable experiences For children, some experiences and exposure to brain injury can have significant development consequences. Exposure to the following can have impacts on a child’s wellbeing: • family violence • mental health issues • fetal alcohol spectrum disorders • disconnection from family.
For young adults, difficult home environments can contribute to poorer wellbeing through: • reduced educational outcomes • lack of employment • exposure to or use of drugs and alcohol • interaction with the youth justice system • lack of or insecure housing.
As we age, we are at higher risk of a brain injury including dementia and Parkinson’s disease. Without proper support, seniors with a brain injury are more at risk of:
Early vulnerable experiences can create gaps in access to systems that grow larger in adulthood. As an adult these situations and systems can be amplified through:
• being isolated • drug and alcohol misuse • impacted rights to decision-making and self-determination • lack of housing.
• family violence • drug and alcohol • lack of employment misuse • criminal justice • lack of or insecure housing.
People living with a brain injury may require additional support to maintain selfdetermination and connection. The cycle of vulnerability can be broken by: • positive cultural, social, and health connections that help with belonging and identity • access to housing.
Choice and self-determination are limited by how connected we are to our communities. The cycle of vulnerability can be broken by: • positive cultural, social, and health connections that help with belonging and identity • access to employment • access to housing.
ul t
Vulnerable experiences
Ad
Cycle-breaking
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Brain injury facts and figures 1 in 45 Australians live with a brain injury
More men than women have brain injuries
Almost 3 in 4 people with a brain injury are under 65
1 in 4 brain injury hospitalisations are people aged 15–24 years
Over 450,000 Australians live with a brain injury
More information about the sources of these statistics is available online. Scan this QR code for a direct link to our web page: synapse.org.au/key-facts-figures-sources/
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Advocate with impact
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National reach
Torres Strait Islands
Staff locations Services Cairns
Sunshine Coast Brisbane
Dubbo Perth
Parramatta
Melbourne
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AUSTRALIA’S BRAIN INJURY ORGANISATION
Services snapshot People are at the heart of what we do. Our services and programs have been designed to help people living with a brain injury, their families, carers, and support networks thrive and succeed. Every brain injury is different and so are the needs of each person. Synapse aims to meet the specific concerns and support the needs of everyone we engage with to achieve the best possible outcomes. Synapse considers all intersections of life where the experience of brain injury can introduce challenges. This shapes the way we seek to create meaningful impact. Taking a holistic approach that recognises how a brain injury can affect various functions of life and identity helps us to find the right pathways and solutions.
Working alongside communities Our purpose-driven and culturally considered engagement with individuals and communities helps us understand gaps in brain injury services. Regardless of age, gender, culture or need, these gaps are the focus of our national voice. The brain injury journey can be a challenging one, but not one that needs to be undertaken alone.
Our services • • • • • • • • • •
Information and referral NDIS support coordination Individual and systemic advocacy Housing Impact and evaluation Peer support groups and programs Hospital and rehabilitation Assessment, screening and planning Brain injury training and education Support at home
Top services requested Advocacy and NDIS appeals Ageing Information referral Peer support services Support coordination Other (housing, training, and other)
22%
21%
8%
11%
4% 34% ANNUAL REVIEW 2022–23
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Recognising brain injury after domestic and family violence Content warning: the following article mentions family violence and assault. Over the past decade, domestic and family violence has transitioned from being an issue discussed within limited circles, to receiving significant attention from various institutions, media outlets, and governments throughout Australia. Changes in state and federal budgets and policies have begun to reflect a growing awareness of the genuine needs of individuals seeking assistance. However, one aspect that has received little attention, research, and action is the impact of brain injury on victims of domestic and family violence.
In 2016–17, almost 1 in 3 of the 21,400 hospitalisations for assault injuries were a result of domestic and family violence.
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According to the Australian Government’s report Family, domestic and sexual violence in Australia: continuing the national story (2019), head and neck injuries are the most common assault injuries, with almost 2 in 3 (63%) resulting in hospitalisations and 7% of brain injuries are inflicted by a spouse or domestic partner. It is essential to recognise that these statistics likely underestimate the true scope of the problem.(1) Head injuries related to intimate-partner violence often remain unreported or undetected during clinical assessments, surfacing after the initial assault. A brain injury caused by strangulation, for example, may not show up immediately and may take weeks or months to develop after the assault. Concussion and mild brain injury do not show up on brain scans and can only be identified by symptoms, cognitive testing, and understanding the history of physical trauma. This underreporting highlights the need for increased awareness and improved assessment procedures to address the hidden aspects of intimate-partner violence.(2) When we take into consideration the causes of brain injury, the fact that medical tests might not show up the extent of a brain injury or at all, along with underreporting. It is logical that this reluctance happens and can be due to numerous circumstances, fear or shame for the person seeking medical help. The inability to correctly assess for brain injury will continue to impact on a person’s life and those around them.
The results show that women in remote communities are less likely to get the help they require due to factors including a fly-in, fly-out health and medical workforce; and lack of referral, diagnosis, and training. This leaves women who may have sustained a brain injury without support and services.
Research conducted by Western Sydney University, James Cook University, and Synapse found that Aboriginal and/or Torres Strait Islander women are 69 times more likely to have a head injury after being assaulted than non-Aboriginal and Torres Strait Islander women.(3) Engaging, training, and upskilling around brain injury and treatment methods are paramount to recognising possible injury. It is essential that police, lawyers, health professionals, and domestic and family violence service professionals are engaged, trained, and upskilled to ensure brain injury is understood and can be screened for in metro, regional, and rural areas. People who use violence also need access to identification, support, evaluation, and services, to ensure the best support to enable behaviour change.
A brain injury can impact a person’s ability to leave a relationship, gain financial independence, and engage with services and support. As the impact of domestic and family violence is seen across Australia and governments are placing great budgetary emphasis on assisting victims. Synapse knows that addressing the often underlying brain injury within a domestic and family violence situation can change lives and allow for proper supports and interventions that can make a real difference.
SOURCES ustralian Institute of Health and Welfare (2019). Family, domestic and sexual violence in Australia: continuing the national A story, for the Australian Government. Available at: aihw.gov.au/getmedia/b0037b2d-a651-4abf-9f7b-00a85e3de528/aihwfdv3-FDSV-in-Australia-2019.pdf.aspx?inline=true. (2) Baxter, K. and Hellewell, S.C. (2019). Traumatic brain injury within domestic relationships: complications, consequences and contributing factors, Journal of Aggression, Maltreatment & Trauma, 28:6, 660–676. Available at: tandfonline.com/doi/full/ 10.1080/10926771.2019.1602089. (3) Fitts, M. S., Cullen, J., Kingston, G., Wills, E., & Soldatic, K. (2022). “I Don’t Think It’s on Anyone’s Radar”: The Workforce and System Barriers to Healthcare for Indigenous Women Following a Traumatic Brain Injury Acquired through Violence in Remote Australia, International Journal of Environmental Research and Public Health, 19(22), 14744. Available at: https:// doi.org/10.3390/ijerph192214744. (1)
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Understanding the impact of a brain injury in criminal justice system Disproportionate numbers of people living with a brain injury in prisons show there is a need for all levels of the criminal justice system to understand brain injury. People with a cognitive or psychosocial disability are overrepresented in the criminal justice system – comprising around 18% of Australia’s population – but almost 50% of people entering prison. Aboriginal and/or Torres Strait Islander people comprise around 3% of the population, but 30% of people incarcerated, and we know that at least 33% of those people live with a brain injury or have sustained a head injury.(1)
The number of people in prison with a brain injury or head injury is likely to be higher than these statistics indicate because a brain injury is not diagnosed or screened for.
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Prevalence of brain injuries in our justice system Research shows that 42% of adult male prisoners have been diagnosed with a brain injury.(2) In 2018, the Australian Institute of Health and Welfare reported more than a third of prisoners had lost consciousness through a head injury.(3) There is a correlation between brain injury and the types of behaviours that often lead to imprisonment. This makes brain injury a key concern in prisons due to the impacts on cognitive function and how these are considered within a prison system and often criminalised prior to entry to corrective settings. These behaviours can include impaired sensory functions such as motor control, speech, problem solving, memory, aggression, or poor impulse control. Two in five people who enter prison report they have a mental health condition.(4) Limited knowledge or screening of brain injury may lead to assumptions of mental health difficulty and diagnosis in the absence of identifying underlying cognitive difficulty.
Increased impact on Aboriginal and Torres Strait Islander people
Screening can help to break the cycle of reoffending
The impact of brain injury while incarcerated is complex and disproportionately affects Aboriginal and Torres Strait Islander prisoners. It is estimated that rates of brain injury are up to three times higher for Aboriginal and Torres Strait Islander people who are incarcerated than non-Indigenous people.
It is important to screen for a brain injury in prison to help avoid the likelihood of reoffending. On release from prisons, people with a brain injury need support accessing employment, housing, health care, and creating positive connections to community. To better respond to the psychological and physical needs and break the cycle of reoffending, the system must recognise and respond to the congruence of a brain injury in prisoners.
Assessing the Disability Needs of Indigenous Prisoners report In 2022, Synapse collaborated with Griffith University, The Hopkins Centre, and Menzies Health Institute Queensland on the Assessing the Disability Needs of Indigenous Prisoners (ADNIP) report to examine how disability is assessed in Aboriginal and/ or Torres Strait Islander prisoners and ex-prisoners. The report found many areas where better knowledge and programs are needed to ensure prisoners with disability are treated with dignity during and after their incarceration, including: • a general lack of research into disability identification tools and processes in prisons • no evidence was found that cultural relevance of assessment tools is considered in prison • identification of disability in prison is reliant on self-reporting • different types of cognitive impairment are poorly differentiated.
At a practical level, that means: • developing intake processes that uniformly screen for cognitive impairment • improving treatments and therapies within the prison environment • developing post- and pre-release planning appropriate for people with a brain injury that supports successful transition back into the community • improving education for professionals in law and criminal justice on the indicators and impact of a brain injury. Screening for a brain injury within the criminal justice system would be of significant benefit, as would education for correctional facility staff on how to better recognise and support people with a brain injury while they are incarcerated, which can lead to lower recidivism. Finally, psychological and physical support on release to help manage the impact of brain injury can be the difference between successful community life post-release and the risk of re-offending that can perpetuate a lifelong cycle of incarceration.
SOURCES: ynapse (2022). Assessing the Disability Needs of Indigenous Prisoners, prepared in collaboration with Griffith University, S The Hopkins Centre, and Menzies Health Institute Queensland. Available at: synapse.org.au/creating-real-change/ourresearch-work/research-projects/assessing-the-disability-needs-of-indigenous-prisoners/ (2) Jackson, M., and Hardy, G. (2011). Acquired Brain Injury in the Victorian Prison System. Corrections Research Paper Series, no. 04. Melbourne: Department of Justice. (3) Human Rights Watch (2018). “I Needed Help, Instead I Was Punished”. Abuse and neglect of prisoners with disabilities in Australia. Available at: hrw.org/report/2018/02/06/i-needed-help-instead-i-was-punished/abuse-and-neglect-prisonersdisabilities (4) Australian Institute of Health and Welfare (AIHW) (2019). The health of Australia’s prisoners 2018. Canberra: AIHW, Australian Government. Available at: aihw.gov.au/reports/prisoners/health-australia-prisoners-2018 (1)
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Changing correctional system outcomes for people with a brain injury The impact of brain injury on behavior can often be misinterpreted, this leads to over-representation in the criminal justice system. Brain injury can show up in many different ways, sometimes it may be observed through impulsive behaviour, increased anger and aggression, poor self-monitoring, poor concentration, lack of inhibition, inflexibility, impulsivity, an inability to read social cues, and memory loss.(1) Cognitive impairment creates greater vulnerability for people in a criminal justice system context. Due to the impacts of a brain injury, understanding, navigating and complying with the requirements of the criminal justice system can be much harder for people with a brain injury.(2) Misunderstandings are not limited to adults within the criminal justice system. We know that youth justice is exacerbated by a lack of understanding and of the skills required to support the complex needs of young people, especially those with histories of trauma, neglect, and a brain injury.(2)
Synapse works to support people in the criminal justice system living with a brain injury. For the past few years Synapse has partnered with a number of Murri Courts in South-East Queensland to provide identify cognitive difficulties of Aboriginal and/or Torres Strait Islander defendants through the Guddi Way Screen.
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A high percentage of participants have been flagged with impairments of at least one cognitive domain – primarily domains affecting social interaction, self-management, and learning. By screening for possible impairment, magistrates are assisted to develop appropriate sentencing conditions and support, ensuring defendants can meet the requirements of bail conditions. Synapse continues to expand application of the Guddi Way Screen within the criminal justice system to ensure those living with a possible brain injury can be better supported within legal frameworks. This year, Synapse also partnered with the Queensland Court Link program in Cairns to provide 12 weeks bail assistance and support to individuals. More information about the Court Link partnership is on page 27. Despite the various reasons people interact with the criminal justice system, it is important that those living with a brain injury (diagnosed or undiagnosed) are afforded the understanding and support they need to experience the best outcomes possible from contact with the justice system, not further disadvantage due to the experience of disability.
Guddi Way Screen
What we have learned 80.96% Participants screened for depression, clincial depression and PTSD Participants not screened for depression, clincial depression and PTSD
19.04%
93%
of participants reported having a head injury 29% have 10+ injuries 36% have 20+ injuries
Misunderstandings are not limited to adults within the criminal justice system. We know that youth justice is exacerbated by a lack of skills and understanding required to support the complex needs of young people, especially those with histories of trauma, neglect, and a brain injury.(3)
SOURCES: SW Law Reform Commission, (2012). People with Cognitive and Mental Health Impairments in the Criminal N Justice System: Diversion (Report No 135, June) 126 [5.88]. Available at: lawreform.justice.nsw.gov.au/Pages/ lrc/lrc_completed_projects/lrc_peoplewithcognitiveandmentalhealthimpairmentsinthecriminaljusticesystem/lrc_ peoplewithcognitiveandmentalhealthimpairmentsinthecriminaljusticesystem.aspx (2) Lansdell, G., Saunders, B., and Eriksson, A. (2022). Young people with acquired brain injury: Preventing entrenchment in the criminal justice system, Report to the Criminology Research Advisory Council Grant: CRG 09/18–19, June. Available at: aic. gov.au/sites/default/files/2022-06/crg_young_people_with_acquired_brain_injury_v4_-_250522.pdf (3) ibid. (1)
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Failure in guardianship leaves individuals disempowered Synapse is continually confronted with the impact of limited choices and rights of people living with brain injury across Australia. In some cases, guardianship orders and failed application of the legislation has led to poor and often disastrous outcomes. Guardianship tribunals have been in operation since the 1980s and a relative or friend can be appointed a guardian to a person who is deemed incapable of managing their own affairs. However, if no guardian is available, a government department is appointed as the person’s guardian. This means that governments can make decisions about an individual’s life with their input being discretionary. This can impact health, lifestyle, or financial decisions. These impacts can be more complex for Aboriginal and/or Torres Strait Islander people and they are disproportionately subject to these orders with limited means to have orders revoked or challenged.
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The Convention on the Rights of Persons with Disabilities (CRPD) recognises the importance of autonomy for people with disability. The first general principle in article 3 of the CRPD is: Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons. (1) Tens of thousands of Australians live under a guardianship, and legislation across most jurisdictions operates under substituted decision-making regimes, with the welfare and interests of a person under guardianship subject to routine reviews. However, in reality, guardianships can be difficult to remove. Without support, a person with a brain injury, dementia, or having had a stroke can be left with no autonomy at all.
In 2009, Australia was one of the original signatories to the United Nations Convention on the Rights of Persons with Disabilities. Ten years later, the United Nations committee overseeing this convention expressed concern that Australia has made little progress to replace substituted decision-making regimes with supported decision-making systems.(2)
By instituting a supported decision-making system into each state’s legislation, people under guardianship will not be deprived of their autonomy and choice. Introducing a framework that enables and facilitates various support for exercising legal capacity could support this approach.(3)
Synapse works to be a voice for those who are unable under the law to speak for themselves, often unjustly. Currently, our Synapse team in New South Wales works as part of the Supported Decision Makers Project (SDMP), which is working to improve legislation around guardianship.
During 2022 and 2023, members of the Synapse leadership spoke at key guardianship conferences, including the Australian Guardianship Conference and the Children’s Court Conference, advocating for changes to guardianship for people with a brain injury to have choice and input into their lives.
Synapse will continue to advocate for those living with a brain injury who have limited voice, advocating for developing a framework and legislation that focuses on supportive decision making.
SOURCES: oyal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability (2022). Roundtable: Supported R decision-making and guardianship: Proposals for reform. Available at: https://disability.royalcommission.gov.au/system/ files/2022-10/Roundtable%20-%20Supported%20decision-making%20and%20guardianship%20-%20Proposals%20for%20 reform.pdf (2) United Nations (2019). Concluding observations on the combined second and third periodic reports of Australia, Convention on the Rights of Persons with Disabilities. Available at: http://docstore.ohchr.org/SelfServices/FilesHandler. (3) Australian Human Rights Commission (2019). Information concerning Australia’s Compliance with the Convention on the Rights of Persons with Disabilities. Available at: https://humanrights.gov.au/our-work/legal/submission/informationconcerning-australias-compliance-convention-rights-personsashx?enc=6QkG1d%2FPPRiCAqhKb7yhsnzSGolKOaUX8SsM2Pfx U7sdcbNJQCwlRF9xTca9TaCwjm5OInhspoVv2oxnsujKTREtaVWFXhEZM%2F0OdVJz1UEyF5IeK6Ycmqrn8yzTHQCn (1)
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Voices from the Torres Strait Islands Determined to ensure the Disability Royal Commission was able to hear from Torres Strait communities, Synapse visited the outer islands to deeply understand communities and elevate their voices. In late 2022, the Synapse team had meaningful yarns about identity and culture with Elders and communities in the Torres Strait Islands of Boigu, Yam, Mabuiag, Poruma and Sue. These stories formed a powerful submission to the Disability Royal Commission, ensuring that voices of Torres Strait Islander people were represented and not overlooked. Often, the voices of Torres Strait Islander people and Aboriginal people are considered as one. Yet, each Torres Strait Island community has unique experiences and challenges due to their vastly different ways of life and remote location. Despite being removed from each other with different language and culture, each island has an unwavering commitment to family, community and culture, with safety being of the utmost importance. Synapse yarned about brain injury and the issues surrounding it with Torres Strait communities. Part of the yarn was to talk about how issues in the community can be related to a brain injury, whether this is domestic violence, kids getting into trouble, the misuse of drugs and alcohol, mental health, and incarceration. It is not an option for people to leave their island to seek medical, disability, or other support because being disconnected from their community often has a far more negative impact on wellbeing and mental health than going without support all together. The extreme level of isolation, absence of any support services, transport only via dingy to neighbouring islands, and resistance to leave community is why many people in the Torres Strait Islands go without support or help. Synapse will continue to advocate for basic medical and support needs to be met
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in the Torres Strait Islands because failure to respect these needs increases a community’s vulnerability to disability or a brain injury. We thank the Elders and communities for generously sharing their stories so that the Disability Royal Commission may better understand what disability means to Torres Strait Islander communities.
Each community we visited is around 200 people in size and, currently, they are not receiving culturally relevant or adequate local support, leaving communities and families vulnerable, especially when a community or family member lives with a disability.
Our partners At Synapse, we are only one piece of a larger puzzle. Synapse partners with philanthropists, medical institutions, government agencies, and academic institutions across Australia. Our partners provide perspectives and evidence that shape how we deliver services and influence national and global conversations around brain injuries.
Our partners • • • • • • • • • • •
Western Sydney University James Cook University Griffith University – The Hopkins Centre Flinders University Monash University Perron Institute for Neurological and Translational Science Curtin Health Innovation Research Institute Latrobe University Edith Cowan University Deakin University The University of Queensland
Our funding We would not be able to provide our range of support services to people living with a brain injury without the belief and support from our funding and industry partners, including: • Australian Government Department of Social Services • Australian Government Department of Health (My Aged Care) • NSW Government Department of Health • NSW Government Department of Community & Justice
• NSW Government Insurance & Care (iCare) • National Injury Insurance Scheme Queensland (NiiSQ) • Queensland Government Department of Child Safety, Seniors and Disability Services • Queensland Government Department of Justice and Attorney-General • National Disability Insurance Agency (NDIA) • Private investors and trusts
Special thanks and acknowledgement • • • • • • •
Griffith University – The Hopkins Centre Australian Government’s Healthdirect Clayton Utz Deborah Hatzi, donor The SJ Hill Foundation, donor Helen Stevenson, donor Trevor Kelly, donor and former Headwest member • Geoff Ross Endowment Giving Fund • Healthline • Connectivity
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Support and innovate
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AUSTRALIA’S BRAIN INJURY ORGANISATION
The Synapse community journey The heart of our work is community. Although Synapse operates on a national scale, we understand that the most profound impact happens when we engage at the local and individual level. Through active listening, continuous learning, dedicated training, and passionate advocacy, we aim to create a change in the lives of individuals and community. We firmly believe that Synapse is just one essential piece of the puzzle for those navigating the challenges of brain injury and the complexities of life.
We forge trust-based relationships with other organisations to effectively bridge gaps in our community. Our Information and Referral team is an understanding ear for those seeking help. Our team serves as a pillar of support for individuals living with brain injuries, and their families and carers.
Listening and connecting
We help navigate complex systems spanning sectors such as housing, health, NDIS, employment, and ageing.
We respect and honour the stories and insights of individuals and communities. These stories are our guide. Every story is unique and the diversity of communities and families remains the foundation of our understanding and commitment.
Being able to connect and have a conversation with our team can be so supportive when information and services seem elusive.
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Forging partnerships and tailoring support Understanding the diverse needs of our local communities and individuals underpins the authenticity of our relationships on a national scale. In Western Australia, Synapse collaborates with other organisations within the brain injury sector. Together, we established the WA Brain Injury Advisory Group, comprising over 20 professionals from various service sectors, including hospitals, outpatient care, rehabilitation, and the broader community. In western New South Wales, we cultivated partnerships with Dubbo Diabetics and Charles Sturt University to support the Koori Wellbeing Support Group. This partnership provides a safe space for Elders to nurture their mental and physical wellbeing through information sessions, health check-ups, and cultural connection. In Sydney, our partnerships continue to grow stronger as we participate in the BeStreetsmart road safety program led by Westmead Hospital. This initiative educates students in Year 10, 11, and 12 from across New South Wales about road accidents and the profound impact brain injuries can have.
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AUSTRALIA’S BRAIN INJURY ORGANISATION
Training and advocating to breaking the cycle of vulnerability To break the cycle of vulnerability, we train and advocate within the systems that often overlook those living with brain injury. An example of this is we provide critical brain injury information sessions to women’s domestic and family violence refuges and connect with local police stations to deliver educational presentations on brain injury. Police are frequently called to scenarios where an understanding of brain injuries can lead to a better response. In Perth, our team trained a group of police officers, equipping them with information about brain injury, how they manifest, and effective strategies to better understand individuals living with, or impacted by, brain injury. Synapse trained legal aid professionals working as part of the Royal Disability Commission to help them understand brain injury, how it affects people living with brain injury, and how to identify strategies to support those living with brain injury. This work allowed people to tell their story to the Royal commission and to seek legal aid and representation.
Court Link Synapse is delivering a pilot Court Link Community Support service in Cairns, Queensland. Court Link is the Queensland Courts’ integrated court assessment, referral, and support program. Synapse’s Court Link Community Support service assists eligible people in Cairns and Queensland’s Far North with transport, outreach, information, advice, and referral over a 12-week period. Many participants are experiencing multiple complexities including living with a disability or impacted by domestic violence. They may be homeless, as well as living with mental health issues or drug and alcohol difficulties.
Synapse believes culturally informed practices are required to strengthen engagement with the program to have a positive impact on sentencing. A person-, family-, culture- and community-centred approach is critical to supporting people to meet court requirements prior to sentencing decisions. For Synapse, this means bringing participants and the Court Link Community Support service team members together based on culture and language group preferences, gender, age, and personal and lived experiences.
Court Link Community Support services
Aboriginal and Torres Strait Islander people are overrepresented in the court system in Cairns and represent 62% of Court Link participants.
• Transporting participants to court and community appointments • Attending court with participants • Checking in with participants • Connecting participants with relevant services in the area to meet goals • Providing advice, information, and general support to participants
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Wurri-Wurri Outreach Aboriginal Elders are important for keeping community and culture strong, while passing on knowledge across generations. Our Wurri-Wurri Outreach in Queensland’s Far North is about respecting Elders. Together, in partnership with Elders, we can keep them strong, both mentally and physically. We do this by listening to what is important to our Elders for keeping them healthy as they get older, including what help they may need from mob or services.
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Wurri-Wurri Outreach travels across communities to help bring Elders and families together for a yarn. Elders run Wurri-Wurri Outreach in different communities around the Cairns region. We have a yarn and a feed while learning about what help may be needed or what information Elders want.
Peer support groups Having a space to connect, share, learn, and get support from people who truly understand is invaluable. Our Reconnections support groups provide those living with a brain injury, or caring for someone with a brain injury, with an opportunity to connect with other individuals and their families. Support groups bring people together through shared experiences.
Hearing other people’s stories, learning from their experiences, and talking about issues that are important to anyone impacted by brain injury is a key reason these groups continue to grow. Synapse hosts monthly groups across Australia.
WA
NSW
Online Perth
Online Central Coast Goulburn Hunter Illawarra Northern Beaches Parramatta Shoalhaven Wagga Wagga
QLD Online Sunshine Coast Caboolture
WA
NSW
Online Perth
Online Central Coast Goulburn Hunter Illawarra Northern Beaches Parramatta Shoalhaven Wagga Wagga
QLD Online Sunshine Coast Caboolture
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Ageing services Everyone deserves to have support that enables them to continue to live as independently as possible, while having choice and control in their everyday life. Synapse is dedicated to continuously learning and listening. Our team is committed to providing tailored support that puts the individual first and developing services that people tell us are most needed to help them age well at home. Our Information and Referral Service team specialise in ageing support. We connect people impacted by brain injury who are over 65 years of age (or over 50 years of age for Aboriginal and Torres Strait Islander people) with information consultants who listen to concerns, discuss what is important to each individual, provide resources, and help find local services. Synapse engages with ageing Australians through peer and social groups to allow those impacted by brain injury to connect with others on a regular basis.
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AUSTRALIA’S BRAIN INJURY ORGANISATION
Helping ageing carers The care needs of those living with a brain injury can impact children, spouses, or siblings. Our team assists anyone impacted by brain injury, including carers and family. We help carers access the most current resources, information, and tools needed to support their loved one and themselves. Synapse’s information consultants can also help find carer support groups. These groups provide invaluable discussions about how to care for someone as they age. It is vital for carers’ wellbeing to take time out and these groups can be a good way to do that.
Housing Home is where we live. Not just bricks and mortar but a feeling. A place to belong. A place to make our own. A place to feel safe. A place to return to. It’s a place from which we connect inside and out. Home can mean the difference between access to a job, access to services, ability to connect with friends and family. Home is so often the foundation of our opportunities in life. Whether it’s a home you own or rent. Whether you’re living alone, living with others, between homes, or with family or friends, what home means to every person is different. Choosing what help you need, when and how you need it can have a big impact on a person’s experience of home; a choice that changes as our lives grow and change from youth to old age.
Having the right support to make that choice a reality is not always the experience of people impacted by brain injury. Not having the right support can mean these choices are restricted or may feel out of reach. The impact of brain injury can often present many challenges in finding and keeping a house and managing day-to-day responsibilities, let alone making it home. We provide this support to people with brain injury because we understand the often-invisible impact of brain injury, but also the complex challenges life throws at us all. Everybody has the right to safe and secure housing. Equally important is choosing how and where you want to live and having the right people to lean on when you need it.
30% of Australians seeking homelessness services have a disability (1) 1 in 5 people experiencing homelessness are Aboriginal and Torres Strait Islander people (2) Young people, women, and Aboriginal and Torres Strait Islander people are at increased risk of unsuitable housing (3)
Community Living Initiative There’s more to living well than a house. But the design of housing and how it enables culturally safe and connected support to be provided matters a lot. It means having the support and opportunities to live life the way you choose, around the people that are important to you, and connected to what matters to your well-being and identity. Our Community Living Initiative has culture at its heart. Family is the foundation to how we support Aboriginal and Torres Strait Islander people with disability. Family is how we support our team. As Australia’s only home of its kind, the Community Living Initiative connects community, cultural knowledge and family to the way support is provided and the way we deeply understand what real self-determination means for Aboriginal and/or Torres Strait Islander mob. Under the wisdom of our Elders and team we deliver support that respects culture and connection as the foundation of strength and healing. It’s not a service, it’s not a place, or a house, it’s family. SOURCES: ustralian Institute of Health and Welfare (2022). People with disability in Australia. Canberra: AIHW, Australian Government; A Available at: https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia (2) Australian Bureau of Statistic (2021). Aboriginal and Torres Strait Islander peoples experiencing homelessness. ABS, Australian Government; Available at: https://www.abs.gov.au/articles/aboriginal-and-torres-strait-islander-peoplesexperiencing-homelessness (3) Housing ACT (2019). Support Requirements and Accommodation Options for People in the ACT with High and Complex Service Needs; Available at: https://www.communityservices.act.gov.au/housing/about-housing-act/news-and-events/ homelessness_services/cohort-study-key-findings (1)
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Research Partnerships and research are central to how we take action on systemic issues affecting people living with brain injury and their communities. Understanding the Lives of Aboriginal and Torres Strait Islander Women with Traumatic Brain Injury from Family Violence in Australia Earlier this year, the report Understanding the Lives of Aboriginal and Torres Strait Islander Women with Traumatic Brain Injury from Family Violence in Australia: A Qualitative Study Protocol, was released. This report was produced by a partnership between Synapse, Western Sydney University, Charles Darwin University, James Cook University, and Townsville Hospital and Health Service.(1) This research intersected with work titled, Using research feedback loops to implement a disability case study with Aboriginal and Torres Strait Islander communities and service providers in regional and remote Australia.(2)
This three-year project was conducted across three jurisdictions: Queensland, Northern Territory, and New South Wales. Although there has been growing recognition of the intersection between family violence and head injury, both in Australia and worldwide, this recognition has not transformed into significant research action. The development of new knowledge is critical for informing robust, evidence-based family violence, disability and health policy, and practice.(1)
This research was developed to add to the qualitative research about surviving domestic and family violence and the connection with brain injury for women, particularly Aboriginal and/or Torres Strait Islander women.
SOURCES: itts, M. (et al.) 2023. Understanding the Lives of Aboriginal and Torres Strait Islander Women with Traumatic Brain Injury F from Family Violence in Australia: A Qualitative Study Protocol, in International Journal of Environment Research and Public Health, 20(2) 1607; https://doi.org/10.3390/ijerph20021607 (2) Fitts, M. (et al.) 2023. Using research feedback loops to implement a disability case study with Aboriginal and Torres Strait Islander communities and service providers in regional and remote Australia, in Health Sociology Review, Volume 32, Issue 1: Sociological Aspects of Knowledge Transition, 94–109. https://doi.org/10.1080/14461242.2023.2173018 (1)
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Research Synapse and AUS-mTB
Aboriginal and Torres Strait Islander people are known to be impacted by brain injury up to three times as often (or more) than non-Aboriginal people. That is why it is vitally important that the study hears directly from Aboriginal and Torres Strait Islander people. Synapse is part of a national research collaboration project called AUS-mTBI. This multi-year study is being funded through the Medical Research Future Fund. This project aims to improve outcomes for Australians who live with a mild traumatic brain injury, including concussion. The study aims to be the first comprehensive collection of national data on mild traumatic brain injury, enabling better prediction of recovery and design of interventions. The AUS-mTBI team will develop comprehensive online platforms that personalise and improve care for mild traumatic brain injury. This platform will modify current technical applications, focusing on major areas of biology, treatment, and social engagement, to recommend the best care pathways to improve outcomes.
Synapse’s role in the project Synapse’s main role in this project is to assist in the Aboriginal and/or Torres Strait Islander sub-study. This sub-study will capture important information specific to Aboriginal and Torres Strait Islander communities in Queensland, New South Wales, and Western Australia, enriching the data and ensuring inclusion of First Nations peoples in the project. The sub-study is being conducted under the guidance of the Aboriginal Advisory Committee. This project will assist in improving care for Aboriginal and Torres Strait Islander people with mild traumatic brain injury and concussion. It will also raise awareness of mild brain injury in Aboriginal and/or Torres Strait Islander communities, including health service planners and providers, and particular issues for people living with brain injury and their families. The study also aims to understand what and how we collect information, to design pathways and treatments that are culturally appropriate and accessible.
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Sustainability 34
AUSTRALIA’S BRAIN INJURY ORGANISATION
Our team The heart of Synapse Synapse employees are committed and deeply passionate about seeing people living with a brain injury live meaningful and independent lives. Our people reflect the diversity of the communities we serve, the lived experiences we support, and the environments in which we operate.
WHAT WE ACHIEVED IN 2022–23 Overall increase in employee headcount 30% of Synapse employees identify as Aboriginal and/or Torres Strait Islander 68% of Synapse employees identify as female and 32% identify as male Staff turnover halved during FY 23 compared to the previous year
National Reconciliation Week Every year, our Synapse team hosts National Reconciliation Week to celebrate family, culture, and the part we play in Reconciliation. Synapse is very proud to be guided by our Elders and the voices of Aboriginal and/or Torres Strait Islander people in all that we do.
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Freecall: 1800 673 074 Email: info@synapse.org.au synapse.org.au