… [P]revention really must be the future. But in the meantime we must provide adequate diagnostic and treatment services, we must support children, families and adults living with FASD …
5.1
FASD is a lifelong condition with no cure; however, early intervention can improve a child’s development. The neuropsychological and behavioural issues associated with FASD can result in disabilities that can prevent independent living and require ongoing support throughout a person’s life. Early individualised interventions, and support for carers and families, can improve a person’s quality-of-life outcomes.
5.2
This chapter explores the range of management and support services needed for individuals with FASD as well as their families, and what makes a difference in the education and justice systems. It also explores current barriers to accessing support services, including issues accessing the National Disability Insurance Scheme (NDIS) and social security payments.
Supporting individuals with FASD
Early intervention
5.3
Although there is no cure for FASD, inquiry participants stressed the importance of early diagnosis and early intervention treatment services in order to improve an individual’s quality-of-life outcomes.
5.4
In its submission to this inquiry, roundsquared noted that the earlier the diagnosis and intervention, the better the outcome for individuals with FASD:
Diagnosis before the age of 6 year[s]; a loving, nurturing, and stable home environment during the school years; the absence of violence and involvement in special education and social service can help reduce the effects of FASDs and help people with these conditions reach their full potential.
5.5
The Aboriginal Medical Services Alliance of the Northern Territory submitted that interventions during early childhood are cost-effective and have positive long-term effects:
Early intervention, and specifically intervention in early childhood, is the most cost-effective intervention to break cycles of intergenerational disadvantage and trauma and improve long-term outcomes across a range of health and wellbeing measures.
Types of supports
5.6
Because the nature and type of disability experienced by an individual with FASD will vary, best-practice support involves a personalised care program, delivered through a multidisciplinary model of care.
5.7
Children with FASD often require strategies and environmental accommodations to address challenging behaviours. At school, children with FASD can experience challenges that require specialised programs which recognise and address their complex needs.
5.8
Programs which develop social and emotional skills can help children with FASD to manage their behaviours and build resilience and connection to community. These protective factors help lessen the risks of mental health issues, antisocial and criminal behaviour, and substance misuse later in life.
5.9
Although behaviour management is commonly the focus of supports, children with FASD also need help to develop life and education skills, particularly in the context of challenges in daily activities including learning, attending, sitting still, self-regulation and impulse management.
5.10
The family and carers of children with FASD also need education and capacity building to help them understand the disability and assist them to support their child’s education, self-regulation, behaviour and social skills.
5.11
The National Fetal Alcohol Spectrum Disorder (FASD) strategic action plan 2018–2028 acknowledges that support and management for an individual with FASD will also require consideration of any secondary disabilities and vulnerabilities, including childhood trauma.
Adults with FASD
5.12
FASD is often not identified until relatively late in life, or not identified at all.
5.13
If FASD is left undiagnosed into adulthood, individuals face significant challenges including the risk of developing secondary disabilities:
Unsupported, as arguably most adults with FASD in Australia are, they may face a life of poor education outcomes, unsuccessful employment, increased risk of substance use disorders, increased involvement in risk-taking behaviours, challenges forming relationships, risk of homelessness, risk of being a victim of violent behaviour or perpetrating violence and contacts with justice systems.
Support for adults with FASD
5.14
The committee heard that the type and level of support required for adults with FASD differs compared to children and young people, and there must be regard for an individual’s functional capacity and longer-term support needs.
5.15
Inquiry participants outlined a range of possible supports for adults with FASD. These could include assistance with financial management, interpersonal relationships or legal situations. Additionally, they may need support for living arrangements, personalised workforce training and vocational support.
5.16
Specific supports may also be necessary for adults with FASD who are also parents. This can include strategies such as modelling and rehearsal, concrete instructions, physical demonstrations and guidance, breaking tasks into smaller steps, overlearning routines and using pictorial aids.
Availability of support services
5.17
An Australian study has found that caregivers struggle to find support and relevant services following the diagnosis of FASD.
5.18
The study concluded that this is due in part to the structure of the Australian health system, the different levels of support provided depending on a child’s diagnosis, and the lack of recognition for FASD and its associated impairments.
5.19
According to one witness, after a difficult journey to a FASD diagnosis, she faced further barriers accessing services for her son with FASD:
It should have been a simple matter of finding services and organisations that would be able to support us with therapies and services. However, we were soon left in despair. Any searches or leads we found mostly ended with allied health professionals who didn't have either the qualifications, training, awareness or knowledge to provide what was needed for our son.
5.20
The Royal Australian College of General Practitioners told the committee that there are mainstream therapy programs available to assist with domain-specific impairments commonly seen in FASD; however, there are not many FASD-specific therapy programs or providers.
5.21
The Royal Australian and New Zealand College of Psychiatrists also expressed concerns about gaps in specialist mental health services needed to meet the needs of individuals with FASD with complex and challenging behaviours.
5.22
The committee heard child health services in some remote communities, where there are high rates of FASD and early life trauma, are inadequate to address the chronic, complex needs of children with FASD.
5.23
However, some supports, such as family-led therapy, have been delivered remotely through telehealth with good results. There are additional challenges to using telehealth, such as building rapport with families and the need for additional coordination, but these were not considered insurmountable.
Meeting the cost of management and support services
5.24
The costs associated with FASD management and accessing support services can be prohibitive, the committee heard.
5.25
Other than the funding available through the NDIS, discussed further below, there are limited other avenues to meet the costs of FASD supports:
The only options for families would be either through current Medicare Funding Schemes via GP, which has prohibitive gap payments or paying completely for private services.
5.26
The Royal Australian College of General Practitioners observed that patients with intellectual disability and socioeconomic disadvantage may be unable to pay Medicare gaps for consultations and services:
Financial barriers to seeing specialists or allied health can occur regardless of geographic location. Many State public hospital systems have limited availability in outpatient services such as allied health.
5.27
According to the Gold Coast Hospital and Health Service, its Child Development Service and others like it are not funded to provide longer term intervention and therapy supports for children in care. As a result these children risk being further disadvantaged where the relevant Department of Child Safety is reluctant to subsidise additional costs.
Supporting parents and carers
The impact on parents and carers
5.28
It is clear from the evidence before this committee that caring for a child with FASD impacts greatly on parents and carers, who experience stress, the burden of care, unmet needs and impacts on quality of life.
5.29
The mother of a child with FASD described to the committee the personal impact of caring for her son with FASD:
Not only am I our son's full-time carer but, for the last nine years, I've also been his educator. We had no alternative but to home educate our son after an initial six weeks of school life during which he was unable to cope with the anxiety and the daily sensory distress. It is not easy but this has also given me an opportunity to tailor an educational program to his strengths and interests. My personal story of having no FASD supports, fighting for funding and fighting for support for me so that I can support our son has taken its toll—but this should not be the case.
5.30
The committee heard that the stress experienced by caregivers has been partly attributed to the lack of understanding of FASD in the community and the need for caregivers to constantly explain their child’s behaviour and advocate for their child’s needs.
5.31
This view was supported by evidence received by the committee from a carer of a child with FASD, who described the personal impact of the lack of support from the state’s child protection system:
There is a great reluctance to put a label on the behaviour or to acknowledge FASD’s existence. This denial means that not only do I not get support, I am undermined and blamed. An example of the disrespect I feel was when I expressed my despair and frustration, the answer was to try to remove him, without any discussion with me. They have no understanding of the importance of stability for a FASD child. The threat of removal caused me to conceal from them the behaviours I am dealing with.
Capacity of parents/carers to engage supports
5.32
Parents and carers face challenges attempting to follow up with the recommendations of a FASD diagnosis and engage the supports needed for their child.
5.33
VicFAS explained that the barriers faced by parents and carers include difficulty completing paperwork, unfamiliarity with the service system, competing demands of raising other children, and general carer stress.
5.34
This issue is particularly pronounced in the child protection context, where carers may not know the extent and complexity of a child’s history and care needs:
Navigating systems that they are not familiar with represents a significant contribution to this difficulty. Even if there is agreement from the Department of Child Safety to provide support, foster carers report that it is often left to them to find these services, with no adjustment in funding to compensate for this expense.
Types of supports for parents/carers
5.35
The University of Queensland submitted that the health and wellbeing of caregivers and families is of clinical importance to achieving positive outcomes for children with FASD and that supports must be practical:
Access to practical supports such as regular respite and also access to interventions that can support caregiver mental wellbeing and family functioning are important areas for consideration.
5.36
Witnesses who care for children with FASD described for the committee the types of practical supports that parents and carers need. For example, they need respite and support with household duties:
Support for those living with FASD, must include support for those who care for them, such as house keeping assistance, some-one to run errands and general household maintenance would make a HUGE difference to carers/parents ability to continue to provide the care needed.
5.37
The Australian Government funds NOFASD to provide a national carer helpline service. Support groups, such as those delivered by NOFASD and the Russell Family Fetal Alcohol Disorders Association, also provide online support for parents and carers of children with FASD. These supports have been well received by parents and carers. However, the committee heard that there are limited face-to-face support groups available to complement online services.
5.38
In Western Australia, the community-initiated and community-led Triple P Positive Parenting Program Jandu Yani U (‘for all families’) has trained ‘parent coaches’ to deliver informal skills training to hundreds of community members within the Fitzroy Valley. Inquiry participants suggested the model has had significant outcomes for families and they were supportive of further expansion in appropriate settings.
Wraparound support services
5.39
Inquiry participants outlined the need for ‘wraparound’ support services as well as diagnostic services. According to Dr Andrew Webster, Head of Clinical Governance at Danila Dilba Health Service (NT):
If you just focus on diagnosis, the child has sometimes a year, maybe two years, of undergoing a diagnostic process without any therapy happening. So we've also looked at employing a social worker, NDIS connectors and other sorts of people who can work in the team to really support that family and that child as they go through this process.
5.40
In the US and Canada, diagnostic clinics use case coordinators and volunteer ‘parent navigators’ to work with families to provide post-diagnosis support including counselling and assisting with paperwork, and help obtaining funding to implement recommendations.
5.41
Several inquiry participants were supportive of support/case coordination models which assist those with FASD and their families to navigate diagnostic and support services:
FASD is a lifelong condition that is characterised by contact with multiple services and professionals. Therefore, support/case coordination (along the lines of the key worker model) may be the most appropriate model of post-diagnostic support. This kind of role should be supported under the NDIS.
Accessing the NDIS
5.42
To access funding under the NDIS, a person must meet disability and early intervention requirements as set out in the National Disability Insurance Scheme Act 2013 (NDIS Act).
5.43
The National Disability Insurance Agency (NDIA) told the committee that FASD is not on the Australian Government’s List of Recognised Disabilities. However, it noted that access to the NDIS can be met by demonstrating that a person has a permanent and significant disability.
5.44
As at 30 September 2020, the NDIA reported that there were 1,606 NDIS applicants with a primary or secondary diagnosis of FASD.
Evidence of a permanent and significant disability
5.45
Children aged over seven years of age must have a permanent and significant disability to access support through the NDIS.
5.46
Of the range of impairments that people with FASD may experience, only Fetal Alcohol Syndrome (FAS) is recognised as a permanent and significant disability by the NDIS.
5.47
According to roundsquared, without a FASD diagnosis, evidence of permanent and significant disability or developmental delay resulting in functional impairment can be difficult to provide, resulting in FASD not being recorded as the primary disability with the NDIS.
5.48
The committee heard concerns that medical professionals are often unable to adequately describe the functional impact of FASD and have a limited understanding of the NDIS. This contributes to the difficulties that individuals face gaining access to NDIS supports.
NDIS funding for early childhood intervention
5.49
Children under seven years of age with developmental delay or disability can access Early Childhood Early Intervention (ECEI) funding through the NDIS.
5.50
The NDIA told the committee that the aim of ECEI funding is for the child, through quality early childhood intervention, to need fewer funded supports in the long run:
The reason we do early childhood intervention is to help the child to be as developed and ready, and the environment the child is moving to in the next stage of life is ready for that person to continue life's journey.
5.51
The NDIA reported that in December 2019, just over a third of all NDIS participants were aged zero to six years. The NDIA also reported that since July 2019, there were 19,636 participants aged zero to six years that had gained access to NDIS.
5.52
The Gold Coast Hospital and Health Service, Child Development Service, told the committee that the ECEI funding has been used to provide access to vital early intervention support.
5.53
It noted that the process has been ‘very positive’ for its service, and reduced the number of children ‘inappropriately “labelled” with an alternative diagnosis’, such as autism spectrum disorder, ‘purely to obtain disability supports’.
5.54
The Northern Territory Government noted that it is working with the NDIA to access early intervention funding using the results of the Ages and Stages Questionnaire (ASQ-TRAK). It is proposed that the NDIA allow ASQ-TRAK results to be regarded as adequate documentation for NDIS ECEI funding.
5.55
The NDIA told the committee that it is currently consulting the community in relation to an ECEI Reset, which will consider how best to support young children and their families and will inform the final design of the ECEI pathway for the younger cohort.
Difficulty navigating access pathways
5.56
Inquiry participants expressed frustration at the difficulty navigating access to the NDIS:
… most individuals and their families affected by FASD or at risk of the disorder remain unaware that they can approach NDIS for support, let alone understand the nature and level of evidence necessary to demonstrate the functional need.
5.57
One witness trying to get supports for her adopted son with FASD described the NDIS journey as ‘horrendous’. She explained:
Trying to obtain the services that we needed was painful. What we needed was help so that we could provide our son with the one-on-one care that is needed all of the time. It's a level of supervision which I relate to as poolside supervision at all times. Imagine the toll this takes on you when you're trying to do all the other daily tasks that need to be done.
5.58
The Australian Human Rights Commission noted the challenge of documenting evidence of functional impairment—a requirement to gain access to the NDIS—for people with additional social, cultural, educational and literacy barriers.
5.59
The NDIA told the committee that it is working with general practitioners to improve their ability to support patients applying to the NDIS. It also noted that NDIS supports are being coordinated with mainstream services through NDIA staff, Local Area Coordinators, Early Childhood Partners and NDIS-funded support coordinators.
Adequacy of support plans
5.60
When an individual with FASD becomes an NDIS participant, a participant support plan is provided in order to meet their reasonable and necessary disability needs.
5.61
However, inquiry participants expressed concerns that those responsible for developing participant support plans lack the skills, experience and resources needed to adequately assess and advise families on appropriate supports and services for children with FASD.
5.62
The National Organisation for FASD (NOFASD) conducted a survey of parents and carers of children with FASD, and found that the vast majority (over 80 per cent) experienced difficulties with the application process and felt that NDIS planners did not have a good understanding of FASD. According to one participant:
The NDIS is extremely difficult to develop an adequate plan with. I needed to educate the planner/s on FASD and even with an enormous amount of information provided and verbally provided, little of the information was used to develop a plan. There did not appear to be a desire to learn about FASD, particularly with our initial planner.
5.63
The committee heard that the pathway to access the NDIS for a person with psychosocial disabilities is particularly difficult due to the episodic nature of mental health conditions and poor understanding amongst NDIS planners.
5.64
Queensland Advocacy Incorporated expressed concerns about the NDIA’s use of Typical Support Packages (TSPs), stating that they do not result in adequate supports for people with FASD. It noted that getting the right support plan is like ‘winning the lottery’ and that TSPs do not recognise the diversity of supports needs.
Availability of service providers
5.65
The availability of providers to deliver services according to participant plans is also problematic, the committee heard. Several inquiry participants cited issues with ‘thin markets’ in parts of Australia where there are limited or no providers available to deliver therapeutic and allied health services.
5.66
According to Dr Lauren Rice, Research Fellow with the University of Sydney Brain and Mind Centre, the lack of support services for rural and remote communities, like Fitzroy Valley in Western Australia, means that NDIS funding is not being used:
What's happening is we have kids who are zero to seven who would easily meet the criteria for an NDIS plan, but why put them on a plan when the service isn't here …
5.67
The NDIA told the committee that the average utilisation rate for people with FASD is between 65 and 70 per cent of their plan, depending on whether it is the person’s first plan or a subsequent plan:
We know across the whole scheme that participants tend to use more of their plans the longer they've been in the scheme … When you look at it by some of the different age groups, generally speaking it's a fairly similar utilisation rate for FASD as it is for the scheme as a whole.
Accessing the NDIS in the child protection system
5.68
The committee heard that young people in care are often unable to access services in their NDIS plan because the people responsible for their care are unfamiliar with the operation of the NDIS and how to maximise its effectiveness.
5.69
In addition, administrative delays and a lack of specialist service providers create barriers to accessing the NDIS for children in care. According to the Gold Coast Hospital and Health Service, Child Development Service:
It is our experience that children under the care of the department, tend to wait longer to access NDIS plans than other children, often due to delays in submitting Application Request Form. Concurrently when [the] plan has been established, children known to the Department are disadvantaged, as they must choose a NDIS managed plan, this in turn significantly reduces the options for eligible providers. FASD intervention, especially in the context of trauma, is a specialist service and unless these clinicians are registered with NDIS, they cannot provide services to this client group.
FASD and the education system
Current challenges
5.70
Evidence before the committee indicated the education system is not well equipped to support children with FASD.
5.71
Witnesses suggested there is a need for greater awareness of FASD within the education system, more teaching and support staff, and more training on FASD-specific strategies and non-punitive behaviour management.
5.72
The committee heard from a foster carer who has had to put her child with FASD in private school in order to access an appropriate level of support:
I think the big problem for the department of education is that teachers are not well trained in dealing not just with FASD but with all the behavioural disabilities and problems the kids have. They have a single approach—we found this time after time in his state school—and that is a punitive approach.
Funding for educational supports
5.73
Inquiry participants expressed frustration with definitional barriers that restrict access to necessary funding for supports for children with FASD in schools.
5.74
The Child Development Service on Queensland’s Gold Coast reported being told that their diagnosis and functional characterisation of a FASD child is not applicable to the education context. Similar examples were cited in Western Australia.
5.75
It was suggested to the committee that a review of state and territory education policies should be undertaken to ensure that students with FASD are not precluded from having their disability recognised and obtaining the support they need.
5.76
The committee also heard concerns about the poor interface between the NDIS and the education system, and the need for further NDIS funding for resources and support workers for children with FASD in schools.
Teacher training and resources
5.77
The National FASD strategic action plan 2018–2028 acknowledges that teachers require training in understanding the learning and behavioural characteristics of children with FASD and delivering evidence-based FASD education practices and strategies. It also notes the need for assessment and individualised education plans developed by a multidisciplinary team.
5.78
In Western Australia, the Marninwarntikura Women’s Resource Centre has developed a nationally available resource for educators which encourages:
screening of children at school, and where necessary, referral for multidisciplinary assessment;
therapeutic supports implemented within the school and focused on building the capacity of families; and
collaboration between teachers and multidisciplinary teams to develop care plans that take into account individual students learning needs.
5.79
State governments reported to the committee that they have implemented initiatives aimed at building the capacity of support staff and teachers working with students with FASD, and putting in place individualised supports including personalised learning plans, case managers and access to specialist like psychologists.
5.80
The Department of Health told the committee that it has committed funding for a suite of teacher and education setting resources to be developed from 2019–20 to 2022–23. The suite is intended to be a national resource, although the department acknowledged that it will be the responsibility of states and territories to utilise it ‘in the most effective way for them’.
Connecting families with screening and support services
5.81
Inquiry participants suggested the education system presents an opportunity to assess a child’s developmental trajectory and support the family to access referral and support services for FASD as necessary and as the child grows.
5.82
For example, entry to pre-school, to preparatory year/primary school and to high school are developmental change points where healthcare providers could be linked directly into the education system to support improved learning outcomes for individuals with FASD.
5.83
In the Northern Territory, the health and education departments have implemented a joint program to screen school-aged children in remote communities. The screening supports early intervention, health promotion and integrates programs and services to coordinate care for the individual.
FASD and the justice system
5.84
Inquiry participants expressed concern over the lack of recognition and support for young people with FASD in the justice system.
Impact on legal proceedings
5.85
In its submission to the inquiry, the Australian Human Rights Commission outlined a range of problems encountered in the justice system for people with FASD:
There is increasing concern regarding the forensic implications of FASD in Australia, as the neuropsychological sequelae can affect all aspects of the legal proceedings, including the person understanding the expectations and providing credible evidence in forensic interviews, fitness to plead, capacity to stand trial and the process of sentencing.
5.86
The committee heard that FASD assessments are generally obtained after conviction, for sentencing purposes. Therefore, without a diagnosis of FASD before sentencing, the court will not consider the impacts of FASD on a person’s level of understanding and ability to comply with orders.
5.87
The committee also heard that, while FASD can be considered a mitigating factor by the courts, it can also be considered a risk factor leading to a more punitive sentence being imposed. In addition, where mandatory sentencing applies to an offence, FASD cannot be taken into account to mitigate a sentence.
5.88
The Australian Human Rights Commission noted that, to address some of these problems, nationally consistent disability justice plans across jurisdictions have been recommended to ensure that people with disability are supported in accessing the same legal protections and redress as the rest of the community.
Screening for FASD
5.89
The Australian Medical Association noted that most children who enter the justice system have previously been recognised by child protection authorities, and should be assessed for signs of FASD and afforded any necessary supports.
5.90
The Aboriginal Legal Service of Western Australia observed that although there have been improvements in the availability of FASD assessments for youth offenders there is a ‘black spot’ in relation to adults.
5.91
The Royal Commission into the Protection and Detention of Children in the Northern Territory found that screening for FASD among children and young people in detention is not occurring, and recommended routine screening.
Access to the NDIS in the justice system
5.92
While an NDIS participant is incarcerated, the relevant state or territory justice system is responsible for most disability-related supports. This includes reasonable adjustments and other supports, such as allied health and other therapies directly relating to a person’s disability.
5.93
The Aboriginal Legal Service of Western Australia suggested that prison may be the best environment to commence engagement with FASD clients, whilst they are in a drug and alcohol free environment. Further, the absence of appropriate support could increase the risk of further reoffending by the individual.
5.94
However, the committee heard that young people with FASD have little support available to assist them to access the NDIS whilst in prison. One witness noted that access to the NDIS is ‘sporadic and uncoordinated’ and is ‘provided with limited input from the primary health care team who knows these children and their needs’.
Training and support for judicial and custodial officers
5.95
The committee heard that, although there has been an increase in awareness of FASD in the criminal justice system, judicial officers and the custodial workforce would benefit from further training in FASD underpinned by a therapeutic approach.
5.96
Dr Andrew Webster of the Danila Dilba Health Service (NT) described the inadequacy of the treatment of children at the Don Dale Youth Detention Centre in Darwin and the need for a better approach:
In particular, we note that the children involved in significant incidents in Don Dale, whose freedom of movement and association in the facility is restricted to manage their behaviour, have diagnosed FASD or are currently being assessed for this. It is our assessment that many existing responses to challenging behaviours at Don Dale may be counterproductive and even lead to further escalation of some of the situations.
5.97
Dr Webster noted that training should not only raise awareness of FASD but also help custodial and justice staff to understand the behavioural implications of FASD, and to change their approach to working and communicating with children with FASD.
Alternative rehabilitative and therapeutic facilities
5.98
Several inquiry participants outlined the inappropriateness of current detention facilities for children with FASD and advocated for alternative and rehabilitative facilities.
5.99
Dr Webster told the committee that it is ‘absolutely clear to our staff that several of the children within Don Dale today should be in a therapeutic facility, not a detention centre’.
5.100
Professor Harry Blagg of the University of Western Australia argued that severe levels of cognitive disability, like those experienced by some people with FASD, require a different approach by the justice system:
… for most of the kinds of conditions that we place on young people even as part of diversion, restorative justice and the courts, they are able to participate fully and be able to learn from an experience. We know that these kids can't. Therefore, we need to have a less adversarial and a more community focused way of doing justice.
5.101
Discussing the risks of indefinite detention and the need for further safeguards and a broader, rehabilitative approach, the Australian Human Rights Commission recommended:
All state and territory governments should also establish, as a matter of urgency, an appropriate range of appropriate facilities to accommodate people who are found unfit to stand trial and/or not guilty by reason of mental impairment.
5.102
Danila Dilba Health Service (NT) argued that there needs to be alternative living options for young people with severe neurodevelopmental and trauma-related impairments. This could include therapeutic secure-care units, as used overseas, as an alternative to the existing punitive approach to juvenile justice.
Diversionary programs
5.103
The committee heard that there is a growing understanding amongst legal practitioners of the benefits of diagnostic assessments that may enable diversionary pathways to be developed for First Nations youth with FASD.
5.104
Professor Blagg suggested that there have been several successful examples in Australia of diversionary programs in First Nations communities that should be replicated:
It is our belief that far more could be done at the point of first contact with the criminal justice system to identify children and their families who may have FASD and ensure that there is speedy assessment to divert the child from the system.
Recognising FASD as a disability
5.105
FASD is not currently recognised as a disability in Australia. According to the Australian Medical Association, this is restricting access to traditional support mechanisms.
5.106
The committee heard that, because FASD is not recognised as a disability within Australian health and education systems, families experience difficulties accessing supports unless their child has a comorbid diagnosis such as an intellectual disability or autism spectrum disorder.
5.107
In addition, access to government disability supports, and recognition of a disability within the criminal justice system, hinges on having a disability as defined in law or policy, and demonstrating certain impairments as a result of that disability.
5.108
According to Gilbert and Tobin, people with FASD are frequently denied support and recognition of their disability because ‘FASD does not fit the relevant definition of disability’.
List of Recognised Disabilities
5.109
The Hidden Harm report recommended in 2012 that FASD be recognised in the Australian Government’s List of Recognised Disabilities. However, when the List of Recognised Disabilities was last updated in 2014, FASD was not included.
5.110
The Department of Social Services told the committee that the List of Recognised Disabilities only includes those disabilities that would always be severe enough to qualify a parent or carer for government supports.
5.111
The committee heard that, because FASD manifests in a broad range of disabilities for individuals, ranging from mild to severe, a further assessment process is required in relation to certain payments.
5.112
However, the department was not able to explain why other spectrum disorders, such as autism spectrum disorder, are explicitly recognised on the List of Government Disabilities.
5.113
Emerging Minds submitted that recognising FASD in the List of Recognised Disabilities would also have broader policy benefits:
Recognition in policy is important for developing awareness of the nature of FASD and accommodations that can help support children in families with FASD. Recognition in policy is also an important implementation driver, supporting efforts for prevention of disability and early intervention for emotional and behavioural difficulties associated with FASD, including professional development among existing and emerging workforces.
5.114
According to roundsquared, recognising FASD as a disability would contribute to a more integrated multidisciplinary approach to support, rather than ‘piecemeal interventions based on particular aspects of the disorder such as depression, mood and anxiety disorders, ADHD and conduct disorders’.
5.115
Recognising FASD on the List of Recognised Disabilities would also have potential flow-on impacts for funding mechanisms, including eligibility for social security payments, as discussed below.
Social security payments
Carer Allowance
5.116
In the social security context, the committee also heard that the definition of ‘disability’ has the effect of excluding people with FASD and their carers from receiving support.
5.117
The Australian Government’s Carer Allowance, for example, is an income supplement available to people who provide daily at-home care to a person with a disability or severe medical condition. It is paid in recognition of a person’s unpaid caring responsibilities and inability to undertake substantial paid work.
5.118
According to Gilbert and Tobin, the criteria for the Carer Allowance can operate to exclude people with FASD because:
FASD is not on the List of Recognised Disabilities; and
a child with FASD may not meet the definition of ‘disabled child’ in section 16 of the Social Security Act 1991.
5.119
Gilbert and Tobin submitted that establishing eligibility for the Carer Allowance outside of this criteria is difficult:
… even if a child has an intellectual, physical and/or psychiatric disability, their carer will be required to establish their eligibility for the Carer Allowance through the Disability Care Load Assessment (Child) Determination process. This can be time-consuming and challenging. The List of Recognised Disabilities is intended to streamline the application process for carers of children with disability, but due to the exclusion of FASD on the List of Recognised Disabilities carers of children with FASD miss the benefit of that streamlining.
Disability Support Pension
5.120
The Australian Human Rights Commission told the committee that failure to recognise FASD as a disability also affects the Disability Support Pension.
5.121
Individuals over the age of 16 with FASD can access the Disability Support Pension, but only if their IQ is assessed as being low, that is, between 70 and 85. According to the Foundation for Alcohol Research and Education (FARE), this has not changed since 2012, and ‘precludes many people with FASD who have IQs within the normal range’.
5.122
FARE suggested that the Australian Government’s Tables for the Assessment of Work-related Impairment for the Disability Support Pension (in particular, Table 7 – Brain Function) should be amended to include FASD as a condition alongside ‘a person with Autism Spectrum Disorder who does not have a low IQ’.
5.123
The Department of Social Services noted that, although the tables for assessment in the legislative instrument have not been revised to include FASD, the department’s guide to social security has been updated to outline that FASD should be assessed in relation to Table 7.
Committee view
5.124
The committee is concerned about the limited support services available after a diagnosis of FASD. As one witness described it, accessing support services can be like a ‘postcode lottery’. Adults with FASD are in a particularly difficult situation, as there is limited recognition of their disability and few specific supports available.
5.125
The committee was moved by evidence outlining the significant impact of FASD on parents and carers, who provide the care and meet the financial and personal costs, with very limited support. Holistic wraparound support is needed for families in recognition of the broad-ranging impacts of FASD on an individual’s life, and to assist parents and carers to navigate fragmented services and implement treatment plans.
Improving access to Early Childhood Early Intervention and NDIS support
5.126
The committee acknowledges that individuals with FASD require support throughout all life stages, ideally from early childhood, to achieve the best life outcomes.
5.127
Therefore the NDIA’s Early Childhood Early Intervention (ECEI) funding must be further streamlined to improve access for families. Streamlined documentary evidence requirements, as proposed in the NT, should be adopted more broadly.
5.128
The committee recommends that the National Disability Insurance Agency implement improvements to the Early Childhood Early Intervention program to streamline access and documentary evidence requirements.
5.129
The committee notes the NDIA announcement of the implementation of an ECEI Reset has the potential to improve NDIS access beyond early childhood and throughout key developmental stages. The ECEI program must be responsive enough to support children potentially through to adolescence, recognising that there are often delays in identifying impairments associated with FASD and achieving a diagnosis.
5.130
The committee recommends that the National Disability Insurance Agency ensure that the planned Early Childhood Early Intervention Reset focus on improving access to support for children throughout key developmental stages.
5.131
Once a person has access to NDIS funding, the quality of the plan and accessibility to service providers is fundamental. The committee notes that the issues raised during this inquiry regarding access to the NDIS within the justice system, the adequacy of NDIS plans, the capability of NDIS planners, and the lack of appropriate service providers across Australia, are known problems and have been raised on many occasions by the Joint Standing Committee on the National Disability Insurance Scheme.
5.132
The committee strongly supports the recommendation of the Joint Standing Committee on the National Disability Insurance Scheme in its recent inquiries into general issues and planning, and in particular:
the recommendation that the NDIA develop and implement a mechanism to encourage planners to develop specialisation in particular types of disability or particular groups of participants; and
recommendations to improve access to the NDIS, including by publishing further information about the planning process, and providing more information and direct support to participants before planning meetings.
Disability supports
5.133
The committee recognises that NDIS support, which is available for individuals with permanent and significant disability and through ECEI funding, will not capture everyone.
5.134
The committee is of the view that further reforms are necessary to the Carer Allowances and the Disability Support Pension to recognise FASD and its associated impairments, and the significant impact that it has on the individual and/or their carer’s ability to engage in paid work.
5.135
The committee strongly recommends that FASD is included in the Australian Government’s List of Recognised Disabilities, to explicitly recognise FASD as a disability, and improve access to Carer Support payments and other supports. Eligibility for the Disability Support Pension must also be reviewed to ensure eligibility for individuals with FASD, who do not necessarily have a low IQ (between 70 and 85), as is the case for autism spectrum disorder.
5.136
The committee recommends that the Australian Government include FASD in the List of Recognised Disabilities.
5.137
The committee recommends that the eligibility requirements for the Disability Support Pension be reviewed to include individuals with FASD with an IQ above the low range (between 70 and 85).
Schools
5.138
The committee has concerns about the variable levels of schools’ capability to support children with FASD depending on their funding, staffing, FASD awareness and training, and learning and behaviour management approach. The committee notes that, despite the significant investment in teacher training and resources by state and territory governments, and recent funding announced by the Australian Government for further teaching resources, more needs to be done to improve the supports available for children with FASD within the education system.
5.139
The committee recommends that the Australian Government work with State and Territory Governments to provide all educators with professional development training in the awareness, understanding and management of FASD.
5.140
The committee recommends that the Australian Government work with State and Territory Governments to ensure all schools can deploy and resource FASD-specific strategies and assistance to support educators and to support students with FASD and suspected FASD, irrespective of IQ level.
Support for parents and carers
5.141
The committee notes that, beyond organisations like the Russell Family Fetal Alcohol Disorders Association and NOFASD that run FASD-specific support groups and a helpline, there are limited available supports for parents and carers. Practical and community-based programs, aimed at supporting parents to manage the range of impairments related to FASD, must be further fostered. The committee was impressed by programs that are supporting parents to implement FASD-specific strategies, including challenging behaviours, through the Triple P Positive Parenting Program delivered by Jandu Yani U.
5.142
The committee recommends that the Australian Government allocate funding for the development and delivery of practical parenting programs to complement existing supports and the FASD hotline.
Child protection and justice systems
5.143
There is clear evidence to suggest a high prevalence of FASD amongst children and young people in contact with child protection, and in the youth justice system, therefore routine screening and assistance to access supports must be prioritised nationally.
5.144
The committee recommends that all children and young people entering the youth justice and child protection systems are screened for FASD.
5.145
The committee recommends that the Australian Government, in partnership with State and Territory Governments, develop and trial protocols for screening children and young people within child protection and youth justice systems for FASD.
5.146
In the justice system, the committee considers that more needs to be done to recognise the specific behavioural impairments associated with FASD. The custodial workforce requires further training and FASD-specific strategies for dealing with young people in correctional facilities.
5.147
The committee recommends that the Australian Government provides further funding to train custodial officers in FASD-specific strategies for dealing with youth with FASD or suspected FASD in correctional facilities.
5.148
The evidence received throughout the inquiry clearly shows that conventional sentencing and correctional facilities are often inappropriate for people with FASD. The committee is of the view that diversionary programs and alternative therapeutic facilities are an underexplored area, and must have further consideration.
5.149
The committee notes that some of the findings and recommendations directed at the Northern Territory Government from the Royal Commission into the Protection and Detention of Children in the Northern Territory may be more broadly applicable, particularly in relation to the use of youth diversion programs and a therapeutic model of youth detention.
5.150
The committee recommends that the Australian Government fund an independent study into best-practice diversionary programs and alternative therapeutic facilities for individuals with FASD or suspected FASD within the justice system.
5.151
The committee is concerned about evidence of the significant challenges faced by carers in their attempts to have child protection services acknowledge FASD and to access supports before care placements risk breaking down.
5.152
The committee recommends that more funding and support is provided by State and Territory Child Protection authorities to carers who are caring for and supporting children with FASD.