Compared to the broader population, a greater percentage of First Nations people do not drink alcohol at all. However, First Nations people who do drink are more likely to do so at levels that are risky. As discussed in Chapter 2, this has translated in a high incidence of FASD in some First Nations communities such as Fitzroy Crossing in Western Australia (WA).
Firstly, the chapter examines the factors that have led to consumption of alcohol at harmful levels in some First Nations communities. Then, the chapter discusses the specific barriers faced by First Nations communities to accessing diagnostic and support services.
The rest of the chapter focuses on how to best support First Nations communities and the successful initiatives that have been developed at community levels.
Inquiry participants explained to the committee that the reasons for the misuse of alcohol in First Nations communities are complex and multi-faceted. Submitters emphasised that the high levels of alcohol use in contemporary First Nations communities should be seen in the context of inter-generational trauma, poverty, suppression of culture and language, and the experience of racism and discrimination.
At a hearing, Dr John Boffa, Chief Medical Officer Public Health at Central Australian Aboriginal Congress (Congress), acknowledged that there are many aspects to alcohol-related harms but stressed that in the context of First Nations peoples:
The root cause of everything is colonisation, dispossession, poverty and inequality.
Impacts of colonisation
The Australian Human Rights Commission and other submitters expressed the view that alcohol-related harm is inextricably linked to the ongoing impacts of colonisation and inter-generational trauma. For example, Congress submitted:
The high prevalence of alcohol related harm (including FASD) in Aboriginal communities is strongly linked to the processes of colonisation which have undermined the capacity of some families to care for their children.
Mr John Paterson, CEO of Aboriginal Medical Services Alliance Northern Territory (AMSANT), also talked about how FASD should be considered within the context of the impacts of colonisation, entrenched poverty and 'discriminatory government policy that serves to disempower people and disconnect people from their right to land, culture and language', and concluded:
These are interacting factors that cannot be viewed in isolation and bear relevance to any discussion on FASD and Aboriginal people.
Ms Emily Carter, CEO of the Marninwarntikura Women's Resource Centre, stressed that government policies have negatively impacted First Nations communities, pointing out that:
The impact of underinvestment in our communities is seen in domestic violence, ongoing disadvantage, drug and alcohol abuse, alcohol-related deaths, and suicides.
Poverty and inequality
Congress noted that deprivation, whether absolute (poverty) or relative (inequality), is strongly correlated with increased rates of substance misuse including alcohol misuse.
AMSANT also stressed that entrenched poverty and disadvantage were factors that were relevant in the context of FASD.
In addition to the need to address the systemic issues linked to the misuse of alcohol, some submitters talked about the immediate need to limit alcohol supply. They recommended measures to address the density of alcohol retail outlets and the introduction of a floor price for alcohol products to reduce access to cheap alcohol.
Congress contended that there is 'a very strong international evidence-base' that indicates that:
increasing the price of alcohol, and particularly that of cheap alcohol, is a 'best buy' for reducing consumption and hence alcohol related harm at a population level; […] and
physical availability is the next most important determinant of alcohol harm, in particular through reducing trading hours and license density.
Ms Pat Turner, CEO of the National Aboriginal Community Controlled Health Organisation (NACCHO), also discussed the issue of alcohol supply with the committee and expressed the view that 'jurisdictions must reduce the number of liquor licences that are handed out, which impairs people from drinking in a safe environment'.
In WA, localised restrictions on alcohol apply in several communities, including Fitzroy Crossing. In Queensland, there are alcohol restrictions in 19 communities, which ban or limit the amount and type of alcohol within the community. In the Northern Territory, alcohol reforms have been introduced more broadly and apply across the Territory (see Box 6.1).
Box 6.1: Northern Territory Government alcohol reforms
In 2017, the Northern Territory Government appointed an independent Expert Advisory Panel to undertake a review of the NT's alcohol policies and legislation.
In response to the review, the Northern Territory Government has introduced a package of reforms to address alcohol-related harm, including:
a floor price to prevent the sale of cheap alcohol;
a Banned Drinkers Register (BDR) to reduce the access to take-away alcohol by problem drinkers;
point-of-sale interventions at all bottle shops in three regional centres;
a new Liquor Act that includes risk-based licensing and greater monitoring of on-licence drinking; and
a commitment to high-quality, ongoing independent evaluation.
Congress reported that these reforms 'have already demonstrated very significant reductions in alcohol-related harm across the NT' and concluded that 'they can be expected to lead to significant reductions in the prevalence of FASD'.
Danila Dilba Health Service also commented on the promising early results of these reforms and recommended the Northern Territory Government maintain its commitment to implement broad measures to limit alcohol supply.
Barriers to accessing services
In addition to the barriers to accessing the diagnostic, management and support services discussed in Chapters 4 and 5 of the report, First Nations communities face additional barriers due to a critical lack of services for those living in remote and rural areas and, more broadly, a lack of culturally appropriate services.
Another issue raised during the inquiry was the Northern Territory's mandatory reporting requirements, which can be a barrier for women to discuss alcohol use or difficulties in caring for their children as they fear mandatory reporting and the child protection system.
Submitters identified that historical government policies of child removal have created inter-generational trauma for the Stolen Generations and others and have led to an ‘underlying fear and mistrust’ of the child protection system by First Nations families.
Rural and remote communities
The Public Health Association Australia and other submitters explained that many First Nations people with FASD are yet to be diagnosed with FASD as access to diagnostic services, particularly in regional and remote communities, is limited. Support and treatment services are also generally lacking in First Nations communities.
NDIS market failure
A key issue is the lack of National Disability Insurance Scheme (NDIS) services available in rural and remote communities:
Many NDIS plans are left with unspent funds, and participants are going without essential services. The underspend is a fiction. It is not an underspend; it's an inability to spend. It is a failure in the market economy created by the NDIS.
Dr Andrew Webster from Danila Dilba Health Service also talked about the general lack of providers to deliver services in the NT and described the situation as an 'example of NDIS market failure':
… when a single professional leaves it can cause a huge hole in the services that are provided to NDIS clients in Darwin. So it is a very major challenge. There's always this 'Is it on or is it off?' and whether the services can be provided in a consistent, long–term way. That is of significant concern.
Dr Lauren Rice, a Research Fellow at the Brain and Mind Centre at the University of Sydney, questioned the relevance of joining the NDIS for First Nations people living in remote WA:
We are being pressured every week by the NDIS to sign people up on plans, and we're saying, 'What's the point of signing people up when people have plans but they're not being used?'
Suitability of the NDIS model
Another issue raised by submitters is the lack of understanding and engagement by the National Disability Insurance Agency (NDIA).
For example, Dr Lauren Rice expressed the view that 'the NDIA is very rigid' and does not understand the needs of First Nations communities, stating:
The NDIS is designed for the Western world, not for an Aboriginal community.
Submitters explained to the committee that the fact that the NDIS precludes family members of an NDIS participant from getting any funding to support that person is limiting and not practical in a remote and First Nations context.
For example, Mr Blair McFarland from the Central Australia Youth Link Up Service in Central Australia commented on the case of a young man in a school who has FASD:
He had an $80,000 program but they were unable to access any of it, because there were no services that could be brought in, and the rules of the NDIS preclude family from getting any funding to support that person, even though it was a full-time job for his mother. The school got around that, when the mother brought the kid to school, by paying her as a teacher's aide so that there'd be a bit of extra support going to the family.
In its submission, the NDIA recognised that more work needs to be done to assist First Nations people, particularly those in remote areas, to understand and access the NDIS.
To improve the situation, the NDIA has initiated the Remote Community Connectors Program, which is based on the principle of employing local people in communities. The program started in parts of the Northern Territory where there were no local area coordinators. Mr Daniel English, the NDIA Territory Manager, Northern Territory, further explained:
We structure it very much in collaboration with the Aboriginal community controlled organisations to ensure that we get the best possible outcome.
Mr Scott McNaughton, General Manager, NDIA, told the committee that the role of community connector is now evolving from helping community members to understand what the NDIS is to helping people get the most from their NDIS plans.
The NDIA also informed the committee that it is working with NACCHO to support local Aboriginal Community Controlled Health Organisations (ACCHOs) to register as NDIS providers and provide NDIS services locally in their communities.
Culturally appropriate services and programs
In addition to poor access to services, there is also a lack of culturally appropriate and sensitive services.
The Australian Medical Association (AMA) and other submitters stressed the importance of culturally and linguistically appropriate services being made available in communities.
In its FASD Action Plan, the Foundation for Alcohol Research and Education stated:
Aboriginal and Torres Strait Islander peoples require culturally appropriate diagnostic and treatment services to assist them in preventing new cases of FASD and to provide support to those who are currently affected, their families and their carers.
Submitters also identified the need for better communication and prevention campaigns, emphasising the need for culturally sensitive and appropriate programs.
NACCHO recommended investment in culturally sensitive, awareness-raising programs, targeting First Nations peoples and communities through mainstream media, school curriculums and health delivery services.
Box 6.2: Northern Territory’s mandatory reporting requirements
In its submission to the inquiry, Danila Dilba Health Service discussed the issue of the Northern Territory's mandatory requirements, particularly under section 26 of the Care and Protection of Children Act (NT). It contended that it leads to women not disclosing their drinking habit to health services as they fear to have their children removed from their care.
Danila Dilba Health Service explained that '[t]here is a lot of confusion and misinformation, particularly in the community, about what types of harm need to be reported and the consequences of reporting.' This is deterring people from attending clinics and seeking treatment.
At a public hearing, Dr Andrew Webster from Danila Dilba Health Service expressed the view that the mandatory reporting laws are 'absolutely not hitting the mark in all situations' and 'can certainly cause harm'. He recommended a review of the legislation and added that 'the impact requirements are having on women seeking support with alcohol cessation or antenatal care should be considered'.
Successful strategies for supporting First Nations communities
The committee heard that programs and services designed and implemented with local communities and led by First Nations peoples are more effective and are leading to better outcomes.
Inquiry participants highlighted the importance of community-led approaches to effectively tackle FASD, both in its prevention and in providing services to those affected by FASD.
For example, the Australian Human Rights Commission expressed the view that 'interventions imposed without community control or culturally appropriate adaption can be counterproductive', and emphasised that strategies led by First Nations peoples ensure cultural appropriateness, leading to better outcomes.
Aboriginal Community Controlled Health Services
AMSANT and other organisations were of the view that programs to prevent, assess, diagnose and manage FASD should be led by Aboriginal Community Controlled Health Services (ACCHSs).
Mr John Paterson, CEO of AMSANT, explained that ACCHSs were best placed to lead activities and programs focused on FASD prevention, screening and treatment because ACCHSs 'already work with vulnerable populations through an Aboriginal workforce that supports families to engage with these services'.
Congress submitted that ACCHSs have structural advantages in delivering services compared to non-Indigenous services because they:
have a holistic approach to service delivery;
are providing culturally responsive services;
have strong relationships with communities;
have a commitment to attract, train and retain First Nations staff;
encourage First Nations individuals and communities to participate in decisions on service delivery, including through formal governing boards; and
have high levels of accountability.
Submitters cited a number of specific programs and services assisting families and people affected by FASD that have been initiated by ACCHSs and ACCHOs and have proven successful.
The Australian Nurse Family Partnership Program (ANFPP) is a national nurse-led, home visiting program that supports women pregnant with a First Nations child. Clients receive continuity of care through regular home visits from 16 weeks' gestation until the baby is two years old.
NACCHO told the committee that the ANFPP was an effective avenue for preventing FASD and was delivered by many ACCHOs across Australia.
Danila Dilba Health Service, which offers this program to its clients, noted that the current ANFPP program 'can only really have an impact on FASD prevention in future pregnancies' as women are referred at 16 weeks' gestation. It recommended expanding the program into the first trimester of pregnancy or developing an alternative, culturally-appropriate program to provide intensive supports to women at the very early stages of pregnancy.
Child and Youth Assessment and Treatment Service
In response to the prevalence of developmentally vulnerable First Nations children in Central Australia, Congress initiated the Child and Youth Assessment and Treatment Service (CYATS) in 2018.
CYATS provides a best-practice service for the early detection of neurodevelopmental conditions such as FASD, Attention-Deficit/Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD), providing a multidisciplinary approach to diagnostic assessment, early intervention, and support for families to access the NDIS.
In addition to specific assessments, the team also provides interventions including direct individual therapy, community support, educational support and family support. CYATS always seeks to operate in collaboration with families, and cultural expertise is provided by a First Nations support worker.
Dr John Boffa told the committee about the funding issues faced by CYATS:
It's funded by four different sources. To get it funded has been a nightmare: to continue its funding is an ongoing nightmare. But, luckily, Minister Hunt just announced a new program to fund the diagnosis and treatment of FASD. But it's a national program—it's got $24 million over four years—so there is no single funding source for that service.
AMSANT reported that demand for the service is high and the waitlist for assessment is long. AMSANT recommended the expansion of this type of service.
Gidgee Healing is a community-led program in Mount Isa, Queensland, which has partnered with Griffith University to deliver a holistic FASD care model that draws on primary health care run by Aboriginal Health Practitioners and Aboriginal Health Workers who are from that community.
The program sits within a broader health service, which includes mums and bubs programs that provide information and support for alcohol harm reduction.
NACCHO told the committee that, although the program is early in its implementation, the shift away from a clinical specialist setting to a community primary healthcare mode has already had an impact:
The long term consequences of this approach remain to be seen, however the logical impact of the community driving the response is that the community has greater awareness and understanding of the causes of FASD and the best ways to support children and families impacted by it.
The committee also heard from Children’s Ground in relation to its work in First Nations communities. It outlined how prevention efforts must be community and family led, and start with education from pregnancy and early childhood, including focusing on high-risk young people and young mothers.
The CEO of Children’s Ground, Jane Vadiveloo, told the committee that, care must be holistic and take into account the individual circumstances of children:
When kids have come in and started with Children's Ground, we can see it manifest in their behaviour, concentration, emotional ability and all sorts of things, so the other area we work in is trauma-informed practise in our early childhood care… We have family members working alongside both cultural practitioners and western practitioners in education. The conversations around the child are on their wellbeing, their needs, what happened at home the night before, what their emotional requirements are and what their nutritional requirements are. They're all indicators that can impact the expression of FASD.
NACCHO provided to the committee information about other examples of best practice in preventing and identifying FASD and supporting people affected by FASD delivered by ACCHOs. This includes the Wuchopperen Health Service in Cairns and Kimberley Aboriginal Medical Services (KAMS).
Submitters discussed at length the benefits of community-led approaches and cited the Marulu Strategy as world's best practice in tackling FASD.
Marulu, a Bunuba word meaning 'worth nurturing', has been set up to create a community response to FASD and trauma in the Fitzroy Valley in Western Australia. Led by community organisations Marninwarntikura Women’s Resource Centre and Nindilingarri Cultural Health Service, it is a collaborative effort involving a number of essential partners, including the Telethon Kids Institute, Royal Far West and the University of Sydney.
At a public hearing, Ms Sue Thomas, Strategic Priority Lead, Marninwarntikura Women's Resource Centre, described the strategy:
The Marulu Strategy is a community-led initiative that draws on Aboriginal controlled organisations, government services and all those working with children with FASD and complex trauma. […] The strategy has been designed to make FASD history but also to strengthen capacity in the community by building on resilience and employing wellbeing.
The Marulu Strategy focuses on prevention, supporting children and families living with FASD, building capacity and enhancing services for those affected by FASD, and developing a sustainable community-driven response to FASD.
A number of Marulu Strategy initiatives are currently in place across the Fitzroy Valley, including research projects and support programs.
Jandu Yani U
Janu Yani U is a Triple P Positive Parenting Program which has been modified to suit the needs of the community.
The Jandu Yani U project started in 2014 with a partnership between the Marninwarntikura Women’s Resource Centre and researchers from the University of Sydney and the University of Queensland. Researchers undertook consultation with the Fitzroy Valley community to adapt the Triple P model.
Following the modification of the Triple P model, local workers from the Fitzroy Valley community were trained and accredited to deliver the program. Professor Elizabeth Elliot who works on the project further explained:
We were able to train nearly 30 parent coaches—mostly Aboriginal women and a couple of men—and improve their skills in, and their knowledge of, parenting. They all said that they'd had very few opportunities for higher education, and they got certification from Triple P International and the University of Queensland. They also said this empowered them both at home and at work.
A recent evaluation of the program has shown positive results with:
a significant decrease in parent perceptions of the intensity and number of their child’s challenging behaviours;
a decline in the number of parents or family members using dysfunctional parenting styles; and
a significant decline in the number of family members who reported symptoms of anxiety.
The program is now an integral component of a suite of programs led by the Marninwarntikura Women’s Resource Centre to support healthy communities across the life span, and is an entry point into engagement with other services.
However, Ms Emily Carter, the CEO of the Marninwarntikura Women's Resource Centre, explained that they need more funding due to the high demand for their services:
We are struggling to exist, let alone keep up with the demand for services required to help our communities heal. We need to have secure funding so we can establish sustainable programs and supports for our community, including funding so we can provide Jandu Yani U parenting program to the 80 families that are on our waitlist.
Bigiswun Kid Project
Another collaboration between the Marulu team and the University of Sydney is the Bigiswun Kid Project, which aims to identify the needs and build the knowledge to improve services and the health and wellbeing of adolescents in remote First Nations communities.
As part of the research project, the team is offering a range of services to young people during the data collection process, including helping with applying for the NDIS.
During the course of the project, a key concern being raised by parents and young people is the lack of access to services, including mental health services.
At a hearing, the committee was advised there is only one clinical psychologist employed by an NGO for the whole region and WA Country Health Service does not currently have clinical psychologists working in the Fitzroy Valley.
The committee acknowledges that alcohol-related harm in First Nations communities is strongly linked to the impacts of colonisation, entrenched poverty and inter-generational trauma.
The committee believes that the alcohol controls in place in several states and territories are, in the long term, likely to help reduce the prevalence of FASD. The committee is of the view that other jurisdictions should consider introducing alcohol reforms, including a floor price to prevent the sale of cheap alcohol, and banning problem drinkers from access to take-away alcohol.
Barriers to accessing services
The issue of access to services in rural and remote areas is not new. Thin markets and issues related to accessing NDIS supports have been identified in several inquiries undertaken by the Joint Standing Committee on the National Disability Insurance Scheme. The committee urges the NDIA to implement the recommendation made by the Joint Standing Committee on the National Disability Insurance Scheme in the NDIS planning final report released in December 2020, which recommends that NDIA review its Rural and Remote Strategy and create a new strategy to address the issues of access to the NDIS in rural and remote areas.
The committee notes that the NDIA has introduced the Remote Community Connectors Program to better engage with First Nations communities. However, the committee has received mixed messages about the effectiveness and appropriateness of the program. The committee encourages the NDIA to consult Aboriginal Community Controlled Health Services and First Nations organisations to improve the model and better engage with families requiring disability support services.
The committee recommends the NDIA undertake consultation and a co-design process with First Nations organisations to improve its Remote Community Connectors Program to enable better access to disability support services for eligible NDIS participants living in remote Australia.
The Marulu Strategy is a stellar example of an effective community-led collaboration between a First Nations community, health experts and philanthropic organisations.
The committee notes the ongoing struggle faced by the Marninwarntikura Women's Resource Centre to meet demand for its programs and services. For example, the Jandu Yani U parenting program alone has 80 families that are on a waitlist. The committee also heard about the lack of psychologists and mental health services in the Fitzroy Valley region. Sustained funding is urgently required to ensure the Marulu Strategy can effectively deliver services and operate without constantly looking for new funding sources.
The committee believes that the Marulu Strategy could be adapted to other communities that struggle with alcohol-related harm and have a high prevalence of FASD. However, the committee is of the view that only a community-led process can result in the development of a fit-for-purpose strategy. Each community has unique needs and must be given the support and resources it needs to develop its own strategy and programs to prevent and manage FASD.
Aboriginal Community Controlled Health Services
A holistic approach to care that is culturally appropriate is paramount to support First Nations people and families affected by FASD. Aboriginal Community Controlled Health Services (ACCHSs) are delivering effective programs which prevent, diagnose and manage FASD in First Nations communities.
The Child and Youth Assessment and Treatment Service (CYATS) in Alice Springs set up by Congress is an example of a successful program initiated by an ACCHS. Similar clinics should be set up in other locations where there is an identified need for such services. The committee is concerned that CYATS funding is ad hoc, fragmented and uncertain in the long term.
The committee notes that the Australian Nurse Family Partnership Program (ANFPP) is designed to support women pregnant with a First Nations child from 16 weeks' gestation until the baby is two years old. The program has been successful but does not support women at the very early stage of pregnancy. The committee is of the view that rather than developing an alternative program to provide supports to women in the very early stage of pregnancy, it would be more appropriate to expand the ANFPP program.
The committee recommends the Department of Health allocate specific funding aimed at supporting First Nations community-led projects to prevent and manage FASD.