Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1694573813876.pdf (Australia)
2019 Inquiry into effective approaches to prevention, diagnosis, and support, for Fetal Alcohol Spectrum Disorder JANDU YANI U PROJECT TEAM – SUBMISSION TO SENATE STANDING COMMITTEE ON COMMUNITY AFFAIRS INQUIRY Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 Contents Introductory Remarks ......................................................................................................................... 1 About – project partners..................................................................................................................... 2 Background - before Jandu Yani U ...................................................................................................... 3 Community action – Jandu Yani U ..................................................................................................... 5 Roll-out ................................................................................................................................................ 5 Project Timeline .................................................................................................................................. 6 Findings ............................................................................................................................................... 7 Contributing factors for success ......................................................................................................... 7 Specific terms of reference comments ............................................................................................... 7 Jandu Yani U participant remarks ..................................................................................................... 10 Concluding Remarks.......................................................................................................................... 10 Introductory Remarks The Jandu Yani U project team (Triple P International, Marninwarntikura Women’s Resource Centre, USYD, UQ) commends the Senate Standing Committee on Community Affairs for inquiring into effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum Disorder (FASD).
The Committee, through submissions to this inquiry and to the previous 2012 Inquiry, ‘FASD: The Hidden Harm’ will already be aware of some of the world-leading community advocacy and action to manage and prevent FASD in the Fitzroy Valley.
A pillar of this work, that has been undertaken in the intervening time between parliamentary inquiries, is Jandu Yani U ‘for all families’, which is a community led implementation of Indigenous Triple P, an Indigenous-focused variation of the Triple P – Positive Parenting Program.

This project was a partnership between Marninwarntikura (Fitzroy Women’s Resource Centre), Triple P International Pty Ltd (TPI), the University of Queensland, and the University of Sydney.
It is part of the wider Marulu Strategy, which is a community initiative to overcome FASD and Early Life Trauma (ELT) in the Fitzroy Valley.

So as to not duplicate too much the content of other submissions, this document will focus mainly on the Jandi Yani U case study and the effective partnership that was crucial to measures of success in supporting families and carers of children in the Fitzroy Valley.
The Jandu Yani U project team, and this submission, supports in full the recommendations provided to the Committee by the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD – Submission 40).

In this context, TPI will note some further policy observations and suggestions that can be made from the experience of Jandu Yani U and particular terms of reference [F, H, J, K & L].
1 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 About – project partners University of Queensland and Triple P International - - Parenting and Family Support Centre School of Psychology Triple P International - The University of Queensland has licensed TPI to disseminate, and work in partnership with communities and service providers to implement, the Triple P – Positive Parenting Program.
TPI hopes to create global social change by putting evidence-based parenting support in the hands of every parent.

Triple P was developed at the University of Queensland and is one of the most effective evidence-based parenting and family support programs in the world, backed up by more than 40 years of ongoing research.

It focuses on building strong family relationships, and enhancing the skills, confidence and self-regulation of parents and family members involved in caring for children.
Team members – A/Professor Karen Turner, Cari Mcilduff, Professor Kate Sofronoff, Professor Matthew Sanders Marninwarntikura Women’s Resource Centre (MWRC) MWRC supports Fitzroy Valley women and their families through encouraging safety and well-being and fostering leadership and financial independence.

MWRC also provides activities, mentoring, support and access to culturally sensitive and respectful services and advocacy.
Strategic Priorities; ▪ Making FASD History ▪ Working towards a harm-free valley ▪ Consolidation and then growth ▪ Actively participate in a new way of partnering with governments & other stakeholders to develop positive change with & for communities across the Fitzroy Valley.
Team members – Emily Carter, June Oscar (AO), Jadnah Davies, Marmingee Hand, Sue Thomas Edith Cox, Jolene Gordon, Sue Cherel, Jane Pederson, Jennie Schwab University of Sydney The Brain and Mind Centre - - Discipline of Child and Adolescent Health, Faculty of Medicine and Health - Kid’s Research, The Sydney Children’s Hospital Network (Westmead) Team members – Professor Stewart Einfeld, Professor Elizabeth Elliot, Ellaina Andersson, Dr. Jeff Nelson, Andrea Lammel 2 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 Background - before Jandu Yani U Fitzroy Valley - Very remote setting - 2,500km north-east of Perth - Fitzroy Crossing and the surrounding 45 communities in Fitzroy Valley have a combined population of 3,500 (80% of which is Aboriginal) As the Committee would be aware, Aboriginal organisations and leaders in the Fitzroy Valley are renowned for their advocacy to reduce the effects of harms caused by alcohol in their community.
Nonetheless, the below is a snapshot of the work that led in to and surrounded the Jandu Yani U project.

Between 2005 and 2010 Grandmothers started noticing behaviours and characteristics of young children that they had never seen before.1 In 2007, Aboriginal leaders in the Fitzroy Valley successfully lobbied for restrictions on the sale of full-strength takeaway alcohol.
In 2008, concerned about the effects of prenatal alcohol exposure on children in the community, its leaders initiated the Marulu Strategy to address FASD and ELT.

They were concerned that children with FASD would have limited capacity to pass on the languages and traditions vital to preserving Aboriginal culture, to the next generation.
- - - - In 2009 the landmark Lililwan 2(all the little ones) Project was initiated to address diagnosis of FASD, and determine the prevalence of alcohol use in pregnancy and FASD in the Fitzroy Valley In 2010, all eligible children (born in 2002 or 2003 and living in the Fitzroy Valley in 2010) were invited to participate in the Lililwan Project, and 127 (95%) families gave consent Stage 1 (interviews with caregivers) indicated that 55% of children were exposed to alcohol in utero, with 93% at high-risk levels, and that ELT and life stress were universal In Stage 2, the Lililwan team conducted comprehensive, multi-disciplinary neurodevelopmental assessments on 108 of the 127 children (85%) In this population-based study, the first in Australia, rates of FASD (19%) were amongst the highest recorded internationally.
An individualised Health and Education Plan was provided for all children and delivered to parents and, with their consent, to school and health services.

1 Marninwarntikura Women’s Resource Centre.

2019.

Marulu Strategy.

https://mwrc.com.au/pages/about- the-marulu-strategy?_pos=2&_sid=44b5fb02a&_ss=r 2 Fitzpatrick, James P., Jane Latimer, Heather Carmichael Olson, Maureen Carter, June Oscar, Barbara R. Lucas, Robyn Doney et al.
"Prevalence and profile of neurodevelopment and fetal alcohol spectrum disorder (FASD) amongst Australian Aboriginal children living in remote communities."

Research in developmental disabilities 65 (2017): 114-126.
3 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 Children in the Lililwan cohort had significant problems with learning and development, behaviour, language, attention, motor skills and mental health, and these were most evident in children with FASD.
- 73% of children in the Lililwan in the Lililwan cohort had reported problems in academic performance - Children with FASD were consistently reported by teachers as having more behavioural - problems than children with no FASD diagnosis Teachers also expressed concern about challenging behaviours in children with FASD, including aggression, impulse control and self-harm.
4 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 Community action – Jandu Yani U In response to the concerns about child behaviour and complex needs following the Lililwan project, a local organisation, Marninwarntikura Women’s Resource Centre (MWRC) initiated a partnership with researchers to bring an evidence-based positive parenting program (Triple P) to the Fitzroy Valley.
Researchers from the University of Sydney and the University of Queensland (including an author of Triple P) were invited by the community to consult with them about family support required.

The community chose to work in partnership to deliver Indigenous Triple P, which had been shown previously to have a significant positive impact on parenting practices, and on child behaviour, as well as impacts on parental confidence (eg.

Turner, Richards & Sanders, 2007).


In addition to the evidence-base, the other positive appeals of Indigenous Triple P were its cultural tailoring for Indigenous families, flexible delivery, and focus on self-determination and self-regulation.
Triple P is not a ‘one-size fits all approach’, and in the context of the Jandu Yani U project, the Triple P program was modified and implemented with both community members and researchers (including Triple P Author) to maintain program fidelity while enhancing fit, acceptability and sustainability to the community (see Figure 1).
Figure 1: The Triple P multilevel model – as adapted for Jandu Yani U Roll-out TPI takes a population health approach to implementing parenting support with the knowledge that this destigmatises parenting support and ensures widest reach.
This is particularly important for 5 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 children and families who may be dealing with FASD because of the high level of stigma attached – and, in many instances, shame felt by mothers in divulging pre-natal alcohol exposure.

Jandu Yani U therefore, was made universally available to all consenting family members of children born after 1 January 2002 and living in the Fitzroy Valley.
Parents could access the program via either organisational referral or word-of-mouth.
Project Timeline 6 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 Findings The rollout of Triple P was beneficial for parents and children with; - Significant decrease in parent perceptions of the intensity and number of their child’s challenging behaviours - One third of parents rated the intensity of their child’s challenging behaviours as clinically significant prior to starting Triple P, this reduced to 5.6% at follow up The number of parents or family members using dysfunctional parenting styles (such as over reactivity) significantly declined following participation in Triple P There was a significant decline in the number of family members who reported symptoms of anxiety.
Half reported that they were experiencing clinically significant levels of anxiety prior to Triple P, this reduced to 35% at follow up Parents and caregivers were also empowered to make change in their family and community - - - ** NB this research due to be published January 2020 – will provide updated citation for the Committee upon publication.
Contributing factors for success The success and the sustainability of the Triple P program in this particular setting where there were multiple vulnerabilities of remoteness, FASD and ELT, as well as potential communication barriers, was due to several factors; The strategy was community initiated and led - - A prior trusting relationship existed between the lead community organisation and the - - research team Program developers worked with community representatives to adapt the professional training, program delivery and parent resources to ensure cultural and contextual fit Practitioners (Parent Coaches) received ongoing implementation mentoring and attended regular peer support supervision - Consultation with community was ongoing Jandu Yani U is now an integral component of a suite of programs led by MWRC to support healthy communities across the life span, and is an entry point into engagement with other services Specific terms of reference comments The research and experience of the Jandu Yani U project lends itself to the project team being able to specifically comment on Inquiry terms of reference (F, H, J, K and L), in addition to endorsing comments made to the Committee by the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD).
(f) International best practice in preventing, diagnosing and managing FASD.

Echoing recommendations from NOFASD, greater success in prevention and diagnosis requires investment in targeted professional development and awareness – especially in combating the false perception that because there is no ‘cure’ per se, that a diagnosis offers no value of benefit to a child or their family.

This point goes to the management section of (F).


The Jandu Yani U experience, and that of families with children with other developmental disabilities, finds that wraparound services, 7 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 including parenting support, can alleviate many challenges associated with child behaviour issues and parental stress where disability is a factor.
Our approach is that support for parents with children with FASD is ideally tailored on an individual basis based on a formulation of each child’s needs and any family determinants influencing challenging behaviour to help parents and carers understand how their environment and routine effects their child's behaviour.

Positive parenting strategies such as those covered by Stepping Stones Triple P3can help families develop predictable boundaries and parenting plans.
(h) the prevalence of, and approaches to, FASD in vulnerable populations, including children in foster and state care, migrant communities and Indigenous communities; As is seen in the approach of the JYU project, collaborative community-led approaches to any need in vulnerable or Indigenous populations is imperative.

Communities (e.g.
Communities (e.g.

Elders, organisational leaders, practitioners) need to be seen and treated as experts in their community context and culture to ensure successful adoption of collaborative, evidence-based parenting support initiatives.

Communities also need to be involved in the implementation planning and ongoing delivery of these initiatives to ensure cultural and contextual fit.
This ensures community ownership, commitment and sustainability (particularly when local practitioners are trained to deliver parent support programs.

Additionally, the focus on FASD and Aboriginal communities by policymakers gives the false impression the FASD is an ‘indigenous problem’.

Wider population screening, diagnosis and data collection is essential to elucidating the more accurate, cross-cultural challenge of FASD.
The Jandu Yani U project and indeed the Marulu Strategy more broadly is a showcase of world’s best practice in tackling FASD head-on, in initiatives that are entirely Aboriginal community led.
(j) the social and economic costs of FASD in Australia, including health, education, welfare and criminal justice; The experience of working in the Fitzroy Valley lends to the knowledge of the following points: - A large number of children and youth are in out-of-home placement and juvenile detention due to their difficulties with behavioural and emotional self-regulation, and not fully understanding the consequences of their actions, which leads to difficulties for the family and community to manage and support children with FASD.
The education system is not adequately prepared for supporting the needs of children with FASD to maintain their school attendance and support their learning so they can reach their academic potential (particularly Speech Therapists, Occupational Therapists and Behavioural specialists are ideal in the school setting to support these children).

Parents and carers also need to be supported to help children engage with school.
The Remote School Attendance Strategy team’s Triple P Parent Coaches engaged quite a few families through the program to empower them with skills to get their children to school.

There are mental health concerns for parents, carers and children stemming from a lack of understanding the way the brain of a person with FASD works and responding negatively or shaming the child, or their family.
- - 3 Stepping Stones Triple P is a variant of the Triple P – positive parenting program designed for families of pre- adolescent children with disabilities.

Stepping Stones has been shown to work with children with intellectual and physical disabilities who have disruptive behaviour.
8 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 (k) access, availability and adequacy of FASD support available through the National Disability Insurance Scheme, including access to effective and early intervention services for individuals diagnosed with FASD; The destigmatising, universal access approach was critical to the success seen so far in the Fitzroy Valley with Jandu Yani U.
This project was able to occur due to NHMRC funding which ends in 2019.

Due to the involvement of so many different services in the Fitzroy Valley (many of the services had their own "Triple P Parent Coach"), referrals to the JYU program occurred as early as when the child was in utero and the mother was concerned about a binge drinking episode prior to knowing she was pregnant.

- Support was offered through JYU for all families - universalising and de-stigmatising parenting support.
- Resources were adapted to suit the literacy needs of the community.

- Additional resources were provided for families due to the lack of access to resources (e.g.

charts, pencils, crayons, stickers) to complete program activities.

This wraparound support and universal approach for families is critical to engagement in services that can reduce the negative impacts of FASD.
As indicated by the paucity of service information and delivery through NDIS for FASD in the NOFASD submission, as it currently stands – the NDIS has little capacity to offer the necessary supports and outcomes that the Jandu Yani U project was able to exhibit.

(l) support for adults with FASD and for parents and carers of children with FASD; Jandu Yani U was available to all families to make accessing parenting support universal and normalised.
Parents who potentially were themselves affected by FASD or experiencing other mental health issues were supported by local community navigators and parent coaches.

JYU improved carers' feelings of empowerment in their homes JYU improved the carers' confidence in their parenting skills.

- - - A significant decrease in parent/carer use of unhelpful parenting practices (i.e.
over- reactivity, hostility) was found and maintained following participation in JYU - A significant decrease in parent/carer anxiety was found and maintained following participation in JYU - Difficult child behaviour decreased and prosocial behaviour increased following parent/carer participation in JYU.

Essential to supporting a child with FASD, is empowering and supporting parents/carers and support networks of the child.
This acknowledges the possibility for evidence-based behavioural family interventions to effect positive outcomes for children FASD and their parents.

Support of this kind is ideally tailored on an individual basis based on a formulation of each child’s needs and any family determinants influencing challenging behaviour to help parents and carers understand how their environment and routine effects their child's behaviour.
Positive parenting strategies such as those covered by Stepping Stones Triple P can help families develop predictable boundaries and parenting plans.
9 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49 Jandu Yani U participant remarks4 The data findings of Jandu Yani U obviously credit the value of the project for the community, however remarks from parents, family members and parent coaches in the Fitzroy Valley who went through the Jandu Yani U program show the impact it had in their own day to day lives, and the importance of its community led nature.
“I think for now personally the parenting thing is just a good thing for families… we are teaching them, or we are not teaching them but telling them that there is a better way for your kids.” “It’s like telling them and showing them there’s other options instead of the way that you’ve always been growing up and the way your parents done it and their parents and the way you’re doing it now.” “Empowering family and that’s the thing, this is the tool.
Jandu Yani U is the way to go this far and wide into this Triple P because that is what I want.

I want to educate the families.” “No offence, but do you think if a Kartiya [non- Indigenous person] was teaching this that so many families would be interested?

… I wouldn’t, but no offence”.

“It’s beneficial, it’s good, we can learn and take it back to our community.” “Use the program, take it back to our communities, something that we could put to good use.
Utilise it effectively.” “This is sort of giving us the skills to be able to take back… it’s special care.

This parenting has helped us to be able to observe and use the right form of discipline, you know?” Concluding Remarks Although the exact quantum is unknown because of the lack of national prevalence data, it is safe to assume the cross-portfolio consequences of not addressing FASD through a prevention, early intervention and management lens are grossly economically inefficient.
Of course, in addition to these consequences are the stories and consequences for real families and children who deal daily and throughout their life course with lack of adequate acknowledgement of their diagnosis, and corresponding challenges and services to address these.

The initiative of the Fitzroy Valley community, the Marulu Strategy more broadly, and Jandu Yani U provide an example of the joint effort necessary to manage FASD and further prevent FASD in the future.
Although this is just one community example, the response can be used as a symbolic comparator for what is required at a whole-of-government level.
We can learn from the Fitzroy Valley in acknowledging the importance of; awareness – for professionals, service providers, clinicians, mothers and the wider community; data – to identify scale of issue, and how to prevent, intervene and manage; and the wraparound services for the individual child or adult, and their surrounding support network (parents, kin, community).
On behalf of all of the Jandu Yani Yu project team, thank you for the opportunity to comment on this important Inquiry – at the time that hearings are scheduled in early 2020, please feel free to contact Eliza Mitchell emitchell@primary-pr.com to discuss coordination of potential appearances of relevant Fitzroy Valley community leaders from this project and parenting and family researchers in front of the Committee.

4 ** NB these remarks form part of a PHD work due to be published early 2020.
10 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 49