Aboriginal Kinship Carers and Children with Fetal Alcohol Spectrum Disorder in Western Australia: Advancing Knowledge from an Indigenous and Disability Lens

Kinship Care

The prevalence of fetal alcohol spectrum disorder (FASD) has been reported to be disproportionately high among children in foster care compared with the general population. However, updated prevalence estimates of infants and children with FASD in foster care or the prevalence of placement of children with FASD in foster care make this unclear. This study examines two questions. Firstly, what is the prevalence of FASD among infants and children in foster care? Secondly, what is the likelihood of placement in foster care for infants and children with FASD? This review was designed using PRISMA-SCR and JBI scoping review guidelines. Three databases were searched for the period June 2012 to June 2023: PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Google Scholar for all countries. Overall prevalence estimates were calculated using a complementary log-log link model along with 95% confidence intervals. Firstly, the estimated prevalence of FASD among infants and children in foster care was 18.8%. Secondly, among children diagnosed with FASD 30.5% are placed into foster care, reflecting greatly increased risk of placement of infants and children with FASD in foster care. We conclude that routine screening for FASD is needed to improve the identification of infants and children with FASD. Increased attention is also needed on developing strategies for FASD prevention. Recognition that nearly one of every three children with FASD will enter foster care demonstrates the need for increased funding, enhanced training and greater availability of services for families and children impacted by FASD.

BackgroundIndividuals with Fetal Alcohol Spectrum Disorder (FASD) are at risk of having adverse childhood experiences (ACEs), especially those with child protection and/or justice system involvement. The complex relationship between FASD and psychosocial vulnerabilities in the affected individual is an important clinical risk factor for comorbidity. This study (1) explored the ACEs and associated stressors in individuals with FASD; (2) investigated the association between ACEs and negative outcomes, i.e., justice/child protection system involvement; and (3) examined the relationship between ACEs and comorbid conditions such as mood and neurodevelopmental disorders.MethodsData were collected retrospectively via file review from diagnostic clinics in Western Australia. Life adversity was coded using a standardised ACEs questionnaire. A total of 211 participants (72% males) with FASD with a mean age of 11 years (range = 2–21) were included in the final sample. 70% of the total sample had been involved with the child protection system and 40% had trouble with the law.ResultsExposure to drinking/substance misuse at home (70%) and domestic violence (52%) were the two most common ACEs across the total sample. In the entire cohort, 39% had four or more ACEs, indicating higher risks of poor health outcomes. Additional stressors recorded were disengagement from school (43%), transiency (19%), victims of bullying (12%), traumatic brain injury (9%) and homelessness (5%). ACEs such as drinking/substance misuse at home, emotional neglect and physical neglect were positively associated with child protection system involvement. Additionally, exposure to domestic violence was positively correlated with justice system involvement. Higher rates of life adversity in this clinical population were associated with an increased number of comorbidities. Specifically, those with FASD who had comorbidities such as attachment disorder, substance use disorder, and PTSD also reported higher ACEs scores.ConclusionACEs were common in this clinical population. Increased ACEs in this sample were associated with increased comorbidities and involvement with the child protection and/or justice system. This highlights that prevention, intervention and early diagnosis of FASD are important for at risk children to reduce the negative effects of ACEs.

1. Sandra H. Jee, MD, MPH 1. Department of Pediatrics University of Rochester Rochester, NY 1. Mark D. Simms, MD, MPH 1. Department of Pediatrics Medical College of Wisconsin Milwaukee, Wisc Improving the Odds for the Healthy Development of Young Children in Foster Care . Dicker S, Gordon E, Knitzer J. National Center for Children in Poverty: Columbia University Mailman School of Public Health. Promoting the Emotional Well-Being of Children and Families (Policy Paper No. 2). January 2002;1–28 Children and Family Services Reviews, Part V: Most States Fail to Meet the Mental Health Needs for Foster Children . Huber J, Grimm B. Youth Law News . 2004;Oct-Dec:1–36 CWLA Standards for Health Care Services for Children in Out-of-Home Care . Washington, DC: Child Welfare League of America; 1988. Educational Experiences of Children in Out-of-Home Care . Smithgall C, Gladden RM, Howard E, Goerge R, Courtney M. Chicago, Ill: Chapin Hall Center for Children at the University of Chicago; 2004:1–77 Fostering Health: Health Care for Children and Adolescents in Foster Care . 2nd ed. Task Force on Health Care for Children in Foster Care, American Academy of Pediatrics, District II, New York State. Elk Grove Village, Ill: American Academy of Pediatrics: 2005 Healthy Foster Care America . www.aap.org/advocacy/HFCA/ On any given day, more than 500,000 children are living in state-supported foster home care. In the course of a year, more than 800,000 children experience placement in a foster home. Many of these children return home quickly, but for some, placement may extend for years and may involve care in multiple foster homes. Most of the children have experienced serious family dysfunction prior to placement, including exposure to domestic violence and to their parents’ mental health disorders, addiction, or criminal activity. Serious neglect and abuse are the most frequently stated reasons for removing children from their parents’ care. Children entering foster homes have extremely high rates of physical and mental health problems, developmental delays, and educational underachievement. As a group, children in foster care …

Prenatal alcohol exposure (PAE) is common with about 80,000 women continuing to drink through all three trimesters of pregnancy each year. PAE is also associated with postnatal adversities, including abuse and neglect, which increase risk for foster care placement. Each day 700 children enter the foster care system. A diagnosis of Fetal Alcohol Spectrum Disorders (FASD) also increases the risk for foster care placement. Among children diagnosed with FASD 70% are or have been in foster care. FASD prevalence rates are increased 10- to 15-fold in foster care systems. Foster care is an important opportunity to detect FASD and provide services to infants and children with FASD. FASD is the third most common identifiable cause of mental retardation in the United States. We describe a court-team-based model of care developed to improve management of children with PAE or FASD entering foster care. The programmatic objectives include: enhancing detection of PAE; screening for FASD; increased consideration of FASD as a potential issue in treatment planning with foster parents; improved entry into treatment; and increased surveillance for parents with an FASD.

Objective: Children with fetal alcohol spectrum disorder (FASD) are overrepresented in early intervention programs, foster care, special education, juvenile corrections, and mental health services. In this study, we examine relationships between FASD and non-FASD controls for adverse childhood experiences (ACEs), and neurodevelopmental disorders. Methods: A chart review was conducted among patients seen at our clinic from 2010-2017 with data on FASD, ACEs, neurodevelopmental diagnoses, and foster or residential care placement available. Results: Relative risk for FASD was increased in patients with increased ACE scores (RR = 5.08), increased numbers of neurodevelopmental diagnoses (RR = 2.36), and patients who have been in foster or residential care (RR = 9.53). FASD risk increased as ACE scores or the number of neurodevelopmental diagnoses increased. Patients with any ACEs were 3.96 times more likely to have FASD, and those with eight or more ACEs were 6.31 times more likely to have FASD than those with no ACEs. Patients with three or more neurodevelopmental diagnoses were 6.55 times more likely to have FASD than those with two or fewer diagnoses. Nine or more diagnoses increased the risk for FASD ten-fold (RR = 10.91). Conversely, patients diagnosed with FASD were more likely to have at least three ACEs (RR = 3.71), at least five neurodevelopmental diagnoses (RR = 1.61), and high rates of previous foster or residential care placement (RR = 5.39). Conclusion: This study demonstrates that all children being considered for placement in foster care or residential should be screened for FASD.

INDIVIDUALS WITH FETAL ALCOHOL SPECTRUM DISORDER (FASD): PREDICTIVE FACTORS FOR SUCCESSFUL OCCUPATIONAL PERFORMANCE By Mary Culshaw, MSc, BScOT A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy at Virginia Commonwealth University Virginia Commonwealth University 2015 Dissertation Chair: Shelly Lane, PhD, OTR/L, FAOTA Professor Emeritus, Department of Occupational Therapy As awareness and diagnoses of FASD grow in Canada, there is increased need to support these individuals across their lifespan. One study suggested the prevalence of FASD may be as high as 10 per 1000 births (May & Gossage, 2001). The impact to society is growing as well, since this population requires support across their lifespan due to cognitive and sometimes physical impairments. It was estimated that the annual cost to Canadians was $53 billion (in 2007 dollar value) to support individuals aged 0-53 years (Stade et al., 2009). There is mounting evidence identifying the cognitive and physical impairments that these individuals have, particularly in children. Studies have also described the adaptive functioning of children with FASD, and their ability to cope in daily life. There is little information on youth and adults regarding their daily lives, and the factors that contribute to success in daily life. The purpose of this study was to identify predictive factors that contribute to success in occupational performance in youth and adults with FASD. Using the Canadian Model of Occupational Performance and Engagement (CMOP-E), the study explored variables reflecting the person, environment, and activity that promoted engagement and participation. The study also investigated the value of using selfreport or performance-based assessment with the FASD youth and adult population. Due to memory, cognitive, and executive functioning deficits, the individual with FASD may not be able to accurately self-report. Results from the study suggest an individual’s living situation, involvement with foster care, and family involvement play a role in successful occupational performance. Formal assessments of cognitive, academic and memory abilities did not appear to play a role in the individual’s school completion and daily life. Interestingly, the characteristics of this FASD sample depicted a group of youth and adults, who, in general, lived with family, had completed some schooling at the grade 10-12 level, had limited employment, were not involved with the judicial system, and were just as likely to be Caucasian as Aboriginal. The concept of occupational performance proved complex, and future study on the factors contributing to occupational performance would benefit from additional variables related to environment and activity than were available in the current data set. 1 Chapter 1: Introduction Awareness of Fetal Alcohol Spectrum Disorder (FASD) in North America is increasing. With this comes growing identification of children and adults whose functioning is affected by prenatal exposure to alcohol. Research has ascertained cognitive functioning is consistently compromised in children, adolescents, and adults with FASD (Murthy, Kudlur, George & Mathew, 2009). Sensory processing, the ability to appropriately react to sensation from the environment, is impaired as well (AbeleWebster, Magill-Evans & Pei, 2012). It is also known that individuals with FASD have great difficulty in adaptive functioning and participating effectively in daily activities (Whaley, O’Connor & Gunderson, 2001). Little is known of the factors that predict outcomes in daily functioning in the FASD population. Exploring daily functioning of individuals with FASD through the lens of occupational performance can give a more complete picture of the many factors that can impact an individual’s functioning. This is essential in order to provide efficient and effective support throughout the lifespan. Occupational performance considers not just the person, but also the environment and occupation, which contribute to successful participation in daily life (McColl, Law, Stewart, Doubt, Pollock & Krupa, 2003). In this dissertation, the use of the term “individual” includes the wide age range within the youth and adult since the study sample included youth and adults. This also allows for

Fetal alcohol syndrome: Diagnosis, epidemiology, and developmental outcomes, CM O'Leary In an excellent review of fetal alcohol syndrome (FAS) published in this issue1, Colleen O'Leary outlines the essential diagnostic criteria for FAS − the triad of growth retardation, abnormal facial features and CNS anomalies in the context of known exposure in utero to alcohol. She describes the numerous clinical features that may be seen in affected children but alludes to the fact that FAS represents only the 'tip of the iceberg' when it comes to the range of outcomes, including behavioural and cognitive dysfunction, that may result from fetal exposure to alcohol. Information presented about the epidemiology of FAS outside Australia suggests a birth prevalence ranging from 0.26 per thousand live births (in middle to upper class Caucasians in the USA)2 to an astounding 39 per 1000 live births (in the predominantly black population of The Western Cape Province in South Africa)3. Differences between rates may change over time and are attributed to a range of risk factors including ethnic diversity, socio-economic status, maternal age, concomitant abuse of other substances, and genotype. Clearly, the criteria used to diagnose FAS, the method of case ascertainment, knowledge of drinking patterns during pregnancy, and the extent to which children have access to specialized paediatric services may also influence rates. One message, however, is clear from these data. Rates of FAS in Indigenous communities − whether American Indians, South Africans, Canadians or Alaskan Natives − are much higher than in non-indigenous individuals. So how common is FAS in Australia and does it occur more frequently in our indigenous communities? O'Leary's review highlights the paucity of published Australian data on FAS. In 1978 a series of six children affected by maternal alcoholism was reported in the MJA by Collins and Turner4'to increase awareness of the FAS in Australia.' Case series published by Walpole and Hockey in 19805 and Lipson et al. in 19836 included a total of only 27 children, 22% of whom had an Aboriginal mother. In a recent issue of this Journal, Harris and Bucens7 conducted a retrospective case note review of children born in the Top End of the Northern Territory between 1990 and 2000. Inpatient and outpatient notes of all children with conditions corresponding (by International Classification of Diseases (ICD) 9 or ICD 10 code) to fetal alcohol syndrome, microcephaly, fetus or newborn affected by maternal use of drugs of addiction, mental and behavioural disorders due to alcohol, or drug withdrawal syndrome in the newborn were reviewed. Seventeen children fulfilled the diagnostic criteria for FAS. All were Indigenous. Based on this number of cases, birth prevalence was estimated at 0.68 per 1000 live births or 1.7 per 1000 indigenous live births. The authors acknowledge this may be an under-estimate. If, for example, the additional 26 children (all Indigenous) that they determined to have 'partial FAS' or 'alcohol-related neuro-developmental disorder' actually have FAS (but documentation in the records was insufficient to make the diagnosis), then rates would increase to 1.87 per 1000 live births and 4.7 per 1000 Indigenous live births. The only other estimate of birth prevalence in Australia comes from a Western Australian study, in which Bower et al. report combined data from the WA Birth Defects Register and the Rural Paediatric Services Database8. The overall rate of FAS was 0.2 per 1000 live births (0.02 per 1000 live births in non-Aboriginal children − one of the lowest rates reported worldwide − and 2.76 per 1000 live births in Aboriginal children). These rates are considered by the authors to be an underestimate of the true prevalence of FAS. An ongoing study using the Australian Paediatric Surveillance Unit (APSU) mechanism for case finding through paediatricians will go some way to providing baseline data on the national FAS rate in Australia9. Preliminary data from 2001 to 2002 suggest an overall birth prevalence lower than that in the WA study, and with an over-representation of Indigenous children. However, the APSU study has limitations and is also likely to result in an underestimate of the true FAS rate. Accurate determination of FAS rate is thwarted for a number of reasons. First, many rural, low socio-ecomomic and Indigenous communities have poor access to specialized paediatric and obstetric services and many do not access antenatal care until late in pregnancy. Second, the detailed clinical data required for the diagnosis of FAS (including birth weight, height and head circumference, growth velocity and facial features) are often poorly recorded in medical notes. Third, retrospective documentation of the extent of alcohol consumption during pregnancy is notoriously unreliable, and this information is often not sought or recorded prospectively. Fourth, the diagnosis of FAS in young infants generally, and recognition of the facial features in Indigenous infants in particular, is difficult. As a result the diagnosis is frequently delayed or never made. Finally, although there is no published information on the knowledge of Australian health professionals about the diagnosis or management of FAS, there is evidence from the US that health professionals there are ill informed about FAS10. As part of the Research Study of Fetal Alcohol Syndrome in Australia, which also includes the APSU study and a review of contemporary data on alcohol use in pregnancy, we are currently surveying obstetricians, general practitioners, Aboriginal and allied health professionals, and community nurses to obtain Australian data. Worryingly, in a South Australian survey of general practitioners published in 1992, only 42% of GPs could identify the hazardous daily level of alcohol intake for women, as defined by the National Health and Medical Research Council (NHMRC) at that time11. The NHMRC Australian Alcohol Guidelines have recently been updated for women who are pregnant or might soon become pregnant (Table 1, Guideline 11)12. However, these recommendations are complex and it is important to know how well they have been disseminated to and understood by health professionals, and how reliably they are communicated to women. If, as we suspect, these guidelines are difficult to operationalize, they will need revision, simplification and wide dissemination. Educational programs are essential for health workers at all levels to provide them with the skills required to screen for alcohol intake in pregnancy, to counsel women at risk, and to ensure early recognition of FAS and referral of children to appropriate services. Children with FAS frequently have behavioural, developmental and cognitive problems. APSU data suggest that these children use a range of specialist paediatric, child development, disability, community, remedial education, respite and psychological medicine services9. Fetal alcohol syndrome has been described as a 'preventable tragedy'.13 However, identifying interventions to prevent FAS requires consideration of the antecedent risk factors. Some risk factors cannot be modified, including maternal genotype for alcohol dehydrogenase, which may influence alcohol intake, metabolism, and fetal effects14. The causal pathway we have developed (Fig. 1) acknowledges that FAS is the end result of a complex interaction between diverse social, political, environmental, and genetic risks. FAS is also the beginning of a lifelong and intergenerational pathway to physical, social and mental ill-health. Overlying this causal pathway are issues specific to our Indigenous population, such as the effects of colonization, marginalization, and loss of traditional culture15. Addressing these issues will be an important part of any FAS initiative in Indigenous populations. Causal pathway to fetal alcohol syndrome. We have identified a number of points at which the pathway to FAS might be interrupted (Fig. 1). Interventions with the most impact are those that could be applied at the top end of the pathway. However, these are also the most difficult to implement. Prevention of FAS is not a problem for health alone, but for a range of portfolios including housing, justice, education, and community services. For example, a reduced societal acceptance of alcohol use might decrease the use of alcohol in women. In Australia, several Indigenous communities have completely banned alcohol in an attempt to minimize some of its negative effects. These include lack of supervision and inadequate nutrition of children, unemployment, domestic violence, non-accidental injuries, accidents and motor vehicle accidents. Improvements in maternal education and access to health services (including antenatal care and contraception) might also decrease fetal exposure to alcohol. Similarly, the provision of better employment opportunities, housing and education, as well as decreasing rates of substance abuse and domestic violence, may also have an impact on alcohol intake. Preliminary data from the APSU9 indicate that many mothers of children with FAS used, in addition to alcohol, a range of addictive and other drugs during pregnancy, including heroin, solvents and cocaine. Few of the mothers had progressed beyond secondary education and as few as one third of children reported with FAS were currently living with a biological parent, many having been placed in foster care. Around half the mothers had more than one child with FAS − a shocking statistic that highlights our failure to protect children most at risk. Interventions at the bottom end of the causal pathway will provide only 'band-aid' solutions to the problem of FAS. Nevertheless, access to specialist health and educational services must be assured for children with FAS, who may have multiple disabilities. Education of affected children and their siblings regarding the perils of alcohol abuse, as well as measures to control access to harmful substances, may go some way to preventing FAS in the next generation. There are encouraging signs of increased interest in FAS in Australia. A recent episode of the SBS series Living Black16 featured FAS and a National Workshop on Fetal Alcohol Syndrome was convened by the Australian National Council on Drugs and the National Expert Advisory Committee on Alcohol in 200217. A literature review of FAS was undertaken on behalf these organizations18, on which Colleen O'Leary's report in this issue of the Journal is based1. In September 2003 a conference highlighting FAS was run by the Indigenous Children's Services Unit of the Queensland Council of Social Service in Townsville. It is timely to build on this momentum. There is an urgent need for research to provide accurate information on the frequency of FAS in specific communities and to evaluate the feasibility and efficacy of potential interventions to interrupt the causal pathway to FAS. The Research Study of Fetal Alcohol Syndrome in Australia is funded by Healthway WA. The Australian Paediatric Surveillance Unit is funded by the Department of Health and Ageing and is a Unit of the Division of Paediatrics of the Royal Australasian College of Physicians. We thank Ms Jan Payne from the Telethon Institute for Child Health Research, Perth, WA for supplying data for this article.

IntroductionIt has been hypothesized that there are at least five pathways to adolescent serious and violent offending (SVOs), which include a prenatal risk factor pathway, a personality disorder pathway, an extreme child temperament pathway, a childhood maltreatment pathway, and an adolescent-onset pathway (1). These distinctive pathways have several important criminal justice system policy and public health implications. For the former, one of the most fundamental challenges has been devising and implementing effective intervention policies/programs to reduce recidivism. As well, SVOs frequently have been a major public health concern because their developmental pathways to offending, not uncommonly, are characterized by several physical and mental health risk factors, which also negatively affect their general social functioning. These risk factors include substance abuse, different forms of abuse including physical, sexual, and neglect, family poverty and disruption, and mental health disorders. Fetal alcohol spectrum disorder (FASD) is one mental health disorder that is so strongly over-represented among offender populations that it has been hypothesized to represent the SVO prenatal risk facto pathway (1). Like other pervasive developmental disorders, FASD is a complicated phenomenon; however, its etiology is less controversial because it is directly caused by the toxic effects of ethanol concentrations in alcohol on the development of the fetal brain. Frequent consumption of higher amounts of alcohol or binge drinking during the second trimester of pregnancy are two ways in which the likelihood of FASD is increased. Given that FASD too is a spectral disorder, its developmental impact on SVOs is very likely varied and mediated by other risk and protective factors.In Canada and other countries with substantial Aboriginal and First Nations populations (e.g., Australia and New Zealand), FASD is a fundamental health and mental health policy issue (2). Although FASD is not easily diagnosable, primarily because current tests are time consuming and costly, FASD has been reported to be disproportionately present among Aboriginal youth in both Canada (2) and Australia (3). Another policy theme is that FASD has likely been under-diagnosed for a variety of reasons but primarily because of resource limitations. It is difficult to obtain and validate prevalence estimates across different countries; yet few health officials in countries such as Canada, Australia, New Zealand, and the United States deny that FASD is a critical public health concern, generally, and for youth and adult criminal justice systems, in particular.In this study, a sample of incarcerated adolescent offenders (n = 514) were asked whether they had been told they had been diagnosed with FASD. File data also was utilized to assess or support the FASD assertion, though, this data too was subject to incomplete reporting. Additional criminogenic risk factors, including abuse, substance use, placement in foster care, and low self-control, were included to examine whether these factors mediated the relationship between FASD and different criminal offending outcome measures. As well, both criminal justice and public health systems' FASD-related costs were considered.Outcomes associated with FASDFASD has been causally related to neuro-cognitive deficits involving executive functioning, behavioral regulation problems, learning, and other mental and physical health problems (4,5). Nonetheless, the prevalence of FASD diagnoses in general populations has been estimated to be very low. Sampson et al. (6), for example, estimated that less than 1% of live births were afflicted with some form of alcohol-related neuro-developmental disorder. In effect, FASD does not appear to be a pervasive social/health issue. However, in countries such as Canada, the prevalence of FASD within certain criminogenic sub-populations (e.g., youth on probation) has been estimated to be as high as 30% (7), and similarly high among youth in forensic inpatient centers (8). …

Prenatal alcohol exposure (PAE) associated with fetal alcohol spectrum disorders (FASD) often remain underdiagnosed. They globally cause a wide range of health and social problems leading to high costs. To outline cumulative health and social care costs in children related with PAE with and without diagnosed FASD, we followed 427 children with PAE until the age of 20 years, and 1795 controls born 1992–2001 until the year 2016. All hospital care and out-of-home care episodes, including placements in foster or residential care, were analyzed, and their costs estimated. Age-dependent patterns of diagnoses and costs of those with PAE with and without diagnosed FASD were compared to controls. Children with PAE had significantly higher risks and hospital costs for both somatic and psychiatric conditions compared with controls. Mean cumulative hospital costs were 55500€ (IQR, interquartile range, 56800€) for PAE with FASD, 30100€ (IQR 25100€) for PAE without FASD and 15600€ (IQR 12000€) for controls. Between 0–10 years, FASD was associated with higher somatic costs, whereas psychiatric costs dominated in the PAE without FASD group. FASD diagnosis was associated with lower risks of traumatic injuries, substance use disorders, and teenage pregnancies, independent of early out-of-home care, which was associated with FASD. Out-of-home care was common in PAE groups, and its costs far exceeded hospital costs: mean cumulative costs were 30-fold in FASD (610000€, IQR 375800€) and 17-fold in others with PAE (344300€, IQR 621900€) compared to controls (20500€, IQR 0€). Health and particularly social care costs associated with PAE are significant. High out-of-home care costs reflect substantial need for support for families at risk. Early diagnosis of FASD may mitigate secondary complications and associated costs emerging in adolescence. Prevention policies are urgently needed at primary, secondary and tertiary level.

Prenatal alcohol exposure (PAE) associated with fetal alcohol spectrum disorders (FASD) often remain underdiagnosed. They globally cause a wide range of health and social problems leading to high costs. To outline cumulative health and social care costs in children related with PAE with and without diagnosed FASD, we followed 427 children with PAE until the age of 20 years, and 1795 controls born 1992-2001 until the year 2016. All hospital care and out-of-home care episodes, including placements in foster or residential care, were analyzed, and their costs estimated. Age-dependent patterns of diagnoses and costs of those with PAE with and without diagnosed FASD were compared to controls. Children with PAE had significantly higher risks and hospital costs for both somatic and psychiatric conditions compared with controls. Mean cumulative hospital costs were 55500€ (IQR, interquartile range, 56800€) for PAE with FASD, 30100€ (IQR 25100€) for PAE without FASD and 15600€ (IQR 12000€) for controls. Between 0-10 years, FASD was associated with higher somatic costs, whereas psychiatric costs dominated in the PAE without FASD group. FASD diagnosis was associated with lower risks of traumatic injuries, substance use disorders, and teenage pregnancies, independent of early out-of-home care, which was associated with FASD. Out-of-home care was common in PAE groups, and its costs far exceeded hospital costs: mean cumulative costs were 30-fold in FASD (610000€, IQR 375800€) and 17-fold in others with PAE (344300€, IQR 621900€) compared to controls (20500€, IQR 0€). Health and particularly social care costs associated with PAE are significant. High out-of-home care costs reflect substantial need for support for families at risk. Early diagnosis of FASD may mitigate secondary complications and associated costs emerging in adolescence. Prevention policies are urgently needed at primary, secondary and tertiary level.

High stress experienced in the foster and kin carer role: Understanding the complexities of the carer and child in context

Early diagnosis of children with fetal alcohol spectrum disorder (FASD) assists in implementing critical early support. The challenge lies in having a diagnostic process that enables valid and reliable assessment of domains of functioning in young children, with the added complexity that many children will also have co-occurring exposure to childhood adversity that is likely to impact these domains. The aim of this study was to test a diagnostic assessment of FASD in young children using the Australian Guide to the Diagnosis of FASD. Ninety-four children (aged 3 to 7 years) with confirmed or suspected prenatal alcohol exposure were referred to two specialist FASD clinics for assessment in Queensland, Australia. There was a significant risk profile with 68.1% (n=64) children having had contact with child protection services, and most children living in kinship (n=22, 27.7%) or foster (n=36, 40.4%) care. Forty-one percent of the children were Indigenous Australians. The majority (64.9%, n=61) of children met criteria for FASD, 30.9% were classified as "At Risk" for FASD (n=29), and 4.3% received no FASD diagnosis (n=4). Only 4 (4%) children were rated as severe for the brain domain. Over 60% of children (n=58) had two or more comorbid diagnoses. Sensitivity analyses indicated that the removal of comorbid diagnoses in the Attention, Affect Regulation, or Adaptive Functioning domains resulted in a change in 7 of 47 cases (15%) to an "At Risk" designation. These results highlight the complexity of presentation and the extent of impairment in the sample. The use of comorbid diagnoses to substantiate a "severe" designation in specific neurodevelopmental domains raises the question of whether there were false-positive diagnoses. The complexity of determining causal relationships between exposure to PAE and early life adversity on developmental outcomes continues to be a challenge in this young population.

ABSTRACTIssue AddressedThe exploration of awareness and knowledge on FASD amongst the Noongar people in the Southwest region of Western Australia (WA) was the focus of this research. FASD is a neurodevelopmental disability caused by prenatal alcohol exposure resulting in lifelong disabilities impacting children, families, kinship caregivers, foster carers, and communities.MethodsThis Aboriginal led research was underpinned by Indigenous methodology utilising a developed culturally appropriate survey tool completed by 180 Aboriginal people in WA. Questions included the history of colonisation in Australia. Quantitative analysis of the survey results was undertaken.ResultsIt was identified by 92% of respondents that they felt it was important to know about FASD and low awareness of FASD exists, and only 20% had received information on FASD. Participants wanted to receive more information on FASD and culturally preferred approaches to training included small groups, community forums, or one to one learning. The majority of participants identified that they had experienced the removal of an immediate member of their family or themselves, or were a member of the Stolen Generations.ConclusionsThe results highlight that awareness, knowledge, and education can contribute to the prevention of FASD and support effective interventions on country and in the community.So What?The impact of FASD, a neurodevelopmental disability, has largely gone unrecognised, prompting an urgent need to support children, families and communities in Australia.

Fetal alcohol syndrome (FAS) is frequently undiagnosed or misdiagnosed, particularly among populations at elevated risk of the condition. We examined the prevalence of FAS among children aged 0 to 5 years enrolled in Medicaid, described characteristics of affected children, and evaluated diagnostic timing between children in foster care and children not in foster care. We conducted a retrospective analysis of Medicaid Transformed Analytic Files for children born from 2015 through 2017 with FAS diagnoses (n = 771), following each birth cohort for 5 years. We used descriptive statistics to examine prevalence rates and demographic characteristics. Multivariate linear regression models assessed differences in diagnostic timing between children in foster care and children not in foster care, controlling for demographic factors. The overall FAS prevalence per 100 000 children aged 0 to 5 years enrolled in Medicaid was 7.7, increasing from 5.1 in 2015 to 11.4 in 2017. Children in foster care represented 60.2% (n = 464) of the FAS cohort. Although behavioral assessments occurred at similar ages for both groups, children in foster care received FAS diagnoses 4.6 to 5.4 months later than children not in foster care (P < .001). The time between the first behavioral assessment and FAS diagnosis was 2.1 to 3.9 months longer for children in foster care than for children not in foster case. Children in foster care had substantial delays in diagnosis compared with children not in foster care. Initial access to behavioral assessment appears equitable; however, barriers exist in the progression from assessment to diagnosis for children in foster care. Implementing targeted screening protocols, improving cross-system information sharing, and enhancing health care provider training could reduce diagnostic delays and improve outcomes for this population.