Health,Social,Education,and Justice Outcomes of Manitoba First Nations Children Diagnosed with Fetal Alcohol Spectrum Disorder: A Population-Based Cohort Study of Linked Administrative Data

Abstract

French

Objective:

To examine health services, social services, education, and justice system outcomes among First Nations children and youth with fetal alcohol spectrum disorder (FASD).

Methods:

In this retrospective cohort study, health and social services, education, and justice data were linked with clinical records on First Nations (FN) individuals aged 1 to 25 and diagnosed with FASD between 1999 and 2010 (n = 743). We compared the FN FASD group to non-FN individuals with FASD (non-FN FASD; n = 315) and to First Nations individuals (matched on age, sex, and income) not diagnosed with FASD (FN non-FASD; n = 2229). Rates and relative risks (RRs) were calculated using generalized linear models.

Results:

FN FASD individuals had similar health services use to non-FN FASD individuals but had greater involvement with child welfare (RR, 1.20; 95% confidence interval [CI], 1.02 to 1.41) and the justice system (RR, 1.37; 95% CI, 1.07 to 1.74) and were more likely to be charged with a crime (RR, 1.40; 95% CI, 1.05 to 1.86). There were no suicides/suicide attempts among the non-FN FASD individuals during the study, but the crude rate/100 person-years of suicides among FN FASD individuals (0.22 for females; 1.06 for males) was substantially higher than for FN non-FASD individuals (0.08 for females; 0.32 for males). There were no significant differences between groups in the education outcomes we measured.

Conclusions:

Young people with FASD are at risk for poor health, education, and social outcomes, but First Nations young people with FASD face comparably higher risks, particularly with child welfare and justice system involvement. The study emphasizes a critical need for appropriate resources for First Nations children with FASD.

Keywords

First Nations indigenous Canada fetal alcohol spectrum disorder health services research child welfare justice system education

Fetal alcohol spectrum disorder (FASD) is a diagnostic term for a range of effects associated with prenatal exposure to alcohol. This group of disorders is characterized by significant brain dysfunction (including learning and intellectual disabilities), behavioural and social disabilities, and severe adaptive dysfunction.¹ The prevalence of FASD in the general population is difficult to establish, but using a conservative approach, it is estimated at 1% to 5% in school-age children in the United States.² Canada lacks comprehensive national data on FASD, and as a result, it has been challenging to accurately estimate the prevalence of this disorder, as well as to develop an understanding of how an FASD diagnosis affects children and of the services they require.³

It has been observed that chronic disorders, including neurodevelopmental disabilities like FASD, create a “submerged iceberg of need,”⁴ with only a fraction of the population who need services actually receiving them. The societal impact of FASD is substantial, as this lifelong disability affects several public systems serving children and their families, including health care, education, child welfare, and the justice system. Previous research has demonstrated that children with FASD have significantly higher rates of hospitalization and prescriptions for medications like psychostimulants and antipsychotics, and they are much more likely to be involved in the child welfare system, to repeat a grade at school, and to receive special education funding compared to children without FASD.⁵ However, the physical and mental health, education, and social service needs of children with FASD remain incompletely understood.

The Royal Commission on Aboriginal People acknowledges FASD as an issue of great concern in Canadian First Nations communities and links it to the socioeconomic impacts of colonization:

Much of the failure of responsibility that contributes to the current imbalance and distress in Aboriginal life centres around the family. Let us clarify at the outset that the failure of responsibility that we seek to understand and correct is not a failure of Aboriginal families. Rather, it is a failure of public policy to recognize and respect Aboriginal culture and family systems and to ensure a just distribution of the wealth and power of this land so that Aboriginal nations, communities and families can provide for themselves and determine how best to pursue a good life.⁶ ^(p8)

Some research suggests that FASD is indeed more common among First Nations children than among the general child population in Canada. Rates of FASD have been estimated to be as high as 23% in studies of subpopulations, including children in custody of child welfare, children involved with the justice system, and Indigenous children.⁷ Children living with FASD often experience additional threats to their development as a consequence of low socioeconomic status (SES) and inconsistent parenting resulting from multiple foster care placements.^8,9 FASD has also been linked to the high rate of youth suicide in some First Nations communities.⁹ Collectively, this previous research suggests that children with FASD likely face additional life challenges throughout their development, and this may be particularly true for First Nations children.^3,7

In the province of Manitoba, a unique opportunity for FASD research exists. Since 1999, data on FASD diagnoses have been collected through the Manitoba FASD Centre, a multidisciplinary assessment, education, training, and research service of the provincial health authority. The data are held in the Manitoba Population Research Data Repository, where they can be linked to a comprehensive population-based collection of health and social service use, education, and justice system data. Research using these linked data sets can provide critical and previously unexplored information about the needs of children with FASD. In Manitoba, First Nations people make up 10.3% of the population (the highest proportion among the Canadian provinces),¹⁰ providing another compelling reason for this research. Thus, the purpose of this study was to compare health and social services use, justice system, and education system outcomes among First Nations children with FASD, non–First Nations children with FASD, and First Nations children without FASD. Ultimately, the results of this cross-sectoral analysis have the potential to inform important policy and program decisions across government sectors.

Methods

Study Design

In this retrospective cohort study, we linked FASD assessment data for 1058 children and youth in Manitoba to health and social service use, education, and justice records held in the Manitoba Population Research Data Repository at the Manitoba Centre for Health Policy (MCHP). Using an anonymized First Nations flag to identify First Nations individuals living on- and off-reserve, we compared health, social, and education outcomes for First Nations children and youth diagnosed with FASD to non–First Nations children and youth with FASD and First Nations children and youth without FASD. Approval for this study was granted by the Human Research Ethics Board at the University of Manitoba, Manitoba’s Health Information Privacy Committee, and the Health Information Research Governance Committee of the Assembly of Manitoba Chiefs.

Data Sources

Data for this study were from the Manitoba Population Research Data Repository, a comprehensive collection of population-based databases that includes administrative, registry, survey, and other data sets describing about 99% of all Manitoba residents. All repository data are stripped of identifying information (such as names and addresses), but a scrambled numeric identifier allows for linkages across databases and over time. We used a deidentified copy of the Indian Registry System from Indian and Northern Affairs Canada, linked to the Manitoba Health Insurance Registry, to identify First Nations individuals.

The specific repository data sets used in this study include the following: the Manitoba Health Insurance Registry, which captures demographic information for all Manitobans eligible to receive health care services; hospital discharge abstracts, which contain data on hospitalizations in Manitoba; physician billing claims, which capture physician visits; the Drug Program Information Network, which monitors prescription medication dispensations; and Vital Statistics (all deaths in Manitoba, including suicides). Data on FASD assessment and diagnoses (1999-2010) came from the Manitoba FASD Centre. The children diagnosed with FASD were assessed by a multidisciplinary team using the Canadian Diagnostic Guidelines.¹¹ Data from social services provider Manitoba Families include information on receipt of income assistance and receipt of services from child welfare, as well as children taken into care. Justice system records from Manitoba Justice identify individuals involved in prosecutions as the accused, a victim, or a witness. Data from Manitoba Education and Training provide information on developmental vulnerability at kindergarten (measured using the Early Development Instrument), school grade repetition, high school graduation, and receipt of special education funding. The repository data have been extensively validated for research purposes.^12
–14

Study Cohort Development

The study cohort comprised all Manitoba children and youth between the ages of 1 and 25 years who received an FASD diagnosis through the Manitoba FASD Centre from 1999 to 2010 (n = 1058). As shown in Figure 1, we used the First Nations identifier to divide these individuals into 2 groups: (1) First Nations children and youth with FASD (FN FASD; n = 743) and (2) non–First Nations children and youth with FASD (non-FN FASD; n = 315); the former group was then matched 1:3 on First Nations status, age, sex, and area-level SES to create a third group, (3) First Nations children and youth without FASD (FN non-FASD; n = 2229).

Figure 1.

Study cohort development. SES, socioeconomic status.

Covariates and Outcome Measures

We examined the cohort by the following covariates: sex, age, mother’s age at first birth, small area-level income, region of residence (urban or rural), and child welfare involvement (having ever received services from child welfare or having ever been in care). The outcome measures included health service use indicators (rates of hospitalization and physician visits, rates of dispensation of at least 1 drug from the following classes: antibiotics, antidepressants, psychostimulants, narcotic analgesics, antipsychotics, or nonsteroidal anti-inflammatory drugs [NSAIDs]; proportion of individuals ever diagnosed with attention-deficit/hyperactivity disorder [ADHD]; rates of suicides and suicide attempts), social service use indicators (proportion of families who had ever received income assistance, ever received child welfare services, and proportion of children who had ever been taken into care of child welfare for at least 1 day), indicators of justice system involvement (proportion of individuals who had ever been charged with, a victim of, or a witness to a crime), and education outcomes (proportion of individuals who were “not ready” on 1 or more developmental health domains of the Early Development Instrument [EDI], who had graduated from high school, who had repeated a school grade, and who had received special education funding). Subsets of the cohort were used for the following outcomes: suicide and suicide attempts (included only cohort members who were 10 years of age and older); EDI, grade repetition, and special education funding (included only cohort members who were 6 years of age and older); high school completion (included only cohort members who had at least 4 years of follow-up data after enrolment in grade 9); and charges in the justice system (included only cohort members who were 12 years of age and older).

Statistical Analyses

We conducted descriptive and regression analyses to compare the crude and adjusted rates of outcomes for study groups (1) FN FASD vs (2) non-FN FASD and (1) FN FASD vs (3) FN non-FASD. Adjusted rates and proportions were modeled using generalized linear modeling, suitable for nonnormally distributed data. Depending on data fit, either a Poisson distribution or a negative binomial distribution was used for each outcome. To model the rates and proportions, the total person-years at risk for each combination of covariates was included as an offset. Models were adjusted for sex, age, income quintile, region of residence (urban or rural), and in-care status (excluded as a covariate when modeled as an outcome). Because access to health care services provided by hospitals and physicians may be different for remote residents, we ran a sensitivity analysis of the rates of hospitalization and physician visit rates between study groups 1 and 2, in which we excluded individuals living in remote communities.

Results

Study Cohort Characteristics

Table 1 presents the sociodemographic characteristics of the 3 study groups. The groups had similar distributions of sex, age, and region of residence (urban/rural). Sixty-two percent of the FN FASD group were born to mothers who began childbearing when they were teens, compared to only 42% of non-FN FASD mothers. Nearly two-thirds (63%) of the FN FASD group was in the lowest income quintile (Q1), compared to about one-third (29%) of the non-FN FASD group. A higher proportion of the FN FASD group (90%) had been taken into care of child welfare than their non-FN FASD counterparts (72%).

Table 1.

Sociodemographic Characteristics of the Study Cohort.

	(1) First Nations Children and Youth with FASD	(2) Non–First Nations Children and Youth with FASD	(3) First Nations Children and Youth without FASD
Overall n (%)	743 (100)	315 (100)	2229 (100)
Sex
Male	480 (65)	207 (66)	1440 (65)
Female	263 (35)	108 (34)	789 (35)
Age group
0 to 5 years	22 (3)	13 (4)	66 (3)
6 to 10 years	163 (22)	64 (20)	489 (22)
11 to 15 years	306 (41)	110 (35)	918 (41)
16 to 18 years	123 (17)	55 (17)	369 (17)
19+ years	129 (17)	73 (23)	387 (17)
Region of residence
Urban	558 (75)	248 (79)	1665 (75)
Rural	185 (25)	67 (21)	564 (25)
Mother’s age at first birth
0 to 19 years	463 (62)	132 (42)	1350 (61)
20 to 25 years	186 (25)	74 (23)	585 (26)
26 to 34 years	56 (8)	48 (15)	197 (9)
35+ years	8 (1)	11 (3)	21 (1)
Data not available	30 (4)	50 (16)	76 (3)
Income quintile
Q1 (lowest)	467 (63)	90 (29)	1401 (63)
Q2	65 (9)	38 (12)	195 (9)
Q3	129 (17)	88 (28)	387 (17)
Q4	34 (5)	63 (20)	102 (5)
Q5 (highest)	26 (3)	21 (7)	78 (3)
Data not available	22 (3)	15 (5)	66 (3)
In care of child welfare
In care at least once	672 (90)	228 (72)	1125 (50)
Never in care	71 (10)	87 (28)	1104 (50)

FASD, fetal alcohol spectrum disorder.

Values are presented as n (%). Sociodemographic characteristics measured in 2011. Being “in care of child welfare” refers to being taken into care for at least one day.

Health Service Use

Adjusted health service use outcomes are presented in Table 2. Among children and youth with FASD (group 1 vs group 2), First Nations individuals had lower rates of hospitalizations and physician visits compared to non–First Nations individuals. Although these differences were not statistically significant in the adjusted models, there were significant differences in the sensitivity analysis that excluded individuals in remote locations. Among First Nations children and youth, those diagnosed with FASD (group 1) had higher rates of hospitalizations and physician visits; higher rates of most medications, including much higher rates of psychostimulant and antipsychotic drug dispensation; and were 3.3 times more likely to ever have been diagnosed with ADHD than those without FASD (group 3).

Table 2.

Adjusted Health Service Use among First Nations and Non–First Nations Children with and without FASD.^a

	(1) First Nations Children and Youth with FASD	(2) Non–First Nations Children and Youth with FASD	(3) First Nations Children and Youth without FASD	Relative Risk or Proportion (95% CI)
	(1) First Nations Children and Youth with FASD	(2) Non–First Nations Children and Youth with FASD	(3) First Nations Children and Youth without FASD	(1) vs (2)	(1) vs (3)
Hospitalizations (rate/1000 person-years)	80.94	90.67	55.94	0.83 (0.66 to 1.05)^b	1.22 (1.01 to 1.48)
Physician visits (rate/person-year)	3.48	3.93	2.35	0.88 (0.78 to 1.01)^b	1.48 (1.34 to 1.63)
Drug dispensations (rate/100 person-years)
Antibiotics	32.87	30.58	28.60	1.07 (0.85 to 1.37)	1.15 (1.02 to 1.30)
Antidepressants	7.24	9.34	5.25	0.73 (0.44 to 1.20)	1.38 (0.93 to 2.04)
Psychostimulants	33.51	35.00	6.55	0.96 (0.73 to 1.25)	5.12 (2.45 to 10.69)
Antipsychotics	17.89	18.83	4.55	0.95 (0.66 to 1.36)	3.94 (2.68 to 5.78)
Narcotic analgesics	10.41	7.96	7.60	1.31 (0.77 to 2.22)	1.37 (1.09 to 1.72)
NSAIDs	11.45	6.70	11.34	1.71 (1.00 to 2.91)	1.01 (0.78 to 1.30)
Ever diagnosed with ADHD (%)	51.24	56.43	15.58	0.91 (0.74 to 1.12)	3.29 (2.60 to 4.16)

ADHD, attention-deficit/hyperactivity disorder; CI, confidence interval; FASD, fetal alcohol spectrum disorder; NSAID, nonsteroidal anti-inflammatory drug.

Findings in bold are statistically significant (P < 0.05).

^a Adjusted for age, sex, mother’s age at first birth, area-level income, region of residence, and in-care status.

^b We ran a sensitivity analysis excluding children in remote locations for this outcome; the results for physician visits were not different than for whole group, whereas the results for hospitalizations were statistically significant (relative risk, 0.73; 95% CI, 0.54 to 0.99).

Suicide and Suicide Attempts

Suicides and suicide attempts were pooled due to the rarity of these events (there were only 40 cases in the entire cohort during the study period). In the FN FASD group, the crude rate of suicide and attempted suicide per 100 person-years was 0.22 for female and 1.06 for male children and youth aged 10 or older. Among non-FN individuals with FASD, there were no suicides or suicide attempts documented from the time of diagnosis onwards (1999-2013). In the matched FN non-FASD group, the crude rate of suicide and attempted suicide was 0.08 for female and 0.32 for male children and youth aged 10 or older.

Social Service Use and Justice System Involvement

Social service use and justice system involvement outcomes are presented in Table 3. First Nations individuals with FASD were more likely to have been taken into care of child welfare, to have any involvement with the law (i.e., charged with a crime, witness to a crime, or victim of a crime), and to have been charged with a crime than non-FN individuals with FASD. First Nations individuals with FASD were also more likely than FN non-FASD individuals to have received income assistance, to have received services from child welfare, to have been taken into care, to have been charged with a crime, and to have had any involvement with the justice system.

Table 3.

Adjusted Social Service Use and Justice System Involvement among First Nations and Non–First Nations Children with and without FASD.^a

	(1) First Nations Children and Youth with FASD	(2) Non–First Nations Children and Youth with FASD	(3) First Nations Children and Youth without FASD	Relative Risk or Proportion (95% CI)
	(1) First Nations Children and Youth with FASD	(2) Non–First Nations Children and Youth with FASD	(3) First Nations Children and Youth without FASD	(1) vs (2)	(1) vs (3)
Family ever received income assistance (%)	95.96	88.68	87.27	1.08 (0.92 to 1.23)	1.10 (1.07 to 1.13)
Family ever received child welfare services (%)	89.23	90.40	83.66	0.99 (0.84 to 1.16)	1.07 (1.03 to 1.10)
Child ever taken into care of child welfare (%)	90.44	75.29	49.58	1.20 (1.02 to 1.41)	1.82 (1.64 to 2.03)
1+ justice system incidents^b (%)	39.70	29.07	33.47	1.37 (1.07 to 1.74)	1.18 (1.07 to 1.30)
Ever charged with a crime (%)	28.13	20.13	19.20	1.40 (1.05 to 1.86)	1.46 (1.31 to 1.64)

CI, confidence interval; FASD, fetal alcohol spectrum disorder.

Findings in bold are statistically significant (P < 0.05).

^a Adjusted for age, sex, mother’s age at first birth, area-level income, region of residence, and in-care status (except when modeling in-care as outcome).

^b Justice system incidents include being charged with, a witness to, and/or a victim of a crime.

Education Outcomes

There were no significant differences between FN FASD and non-FN FASD individuals in the education outcomes measured (Table 4). However, FN FASD children and youth had poorer outcomes than other First Nations individuals without FASD: they were more likely to not be ready for school in at least 1 domain of developmental health and to receive special education funding, and they were less likely to graduate from high school.

Table 4.

Adjusted Education Outcomes among First Nations and Non–First Nations Children with and without FASD.^a

	(1) First Nations Children and Youth with FASD	(2) Non–First Nations Children and Youth with FASD	(3) First Nations Children and Youth without FASD	Relative Proportion (95% CI)
	(1) First Nations Children and Youth with FASD	(2) Non–First Nations Children and Youth with FASD	(3) First Nations Children and Youth without FASD	(1) vs (2)	(1) vs (3)
Not ready for school in at least 1 domain^b (%)	84.55	72.03	84.55	1.17 (0.68 to 2.03)	1.38 (1.23 to 1.55)
Repeated a school grade (%)	9.64	11.35	7.57	0.85 (0.46 to 1.56)	1.27 (0.88 to 1.84)
Graduated from high school (%)	11.54	14.28	24.85	0.81 (0.28 to 2.34)	0.46 (0.26 to 0.84)
Received special education funding (%)	57.36	53.75	16.35	1.07 (0.87 to 1.31)	3.51 (2.95 to 4.18)

CI, confidence interval; FASD, fetal alcohol spectrum disorder.

Findings in bold are statistically significant (P < 0.05).

^a Adjusted for age group, sex, mother’s age at first birth, area-level income, region of residence, and in-care status.

^b School readiness is measured using the Early Development Instrument and describes the proportion of children who are “not ready” in 1 or more of 5 developmental health domains.

Discussion

In this retrospective cohort study, we identified similar health services use but significant differences in social, education, and justice outcomes between First Nations and non–First Nations children and youth with FASD diagnoses. First Nations individuals with FASD generally had higher involvement with the child welfare system and the justice system than non–First Nations individuals with FASD. There were no suicides/suicide attempts in the non-FN FASD group during the study period, but having FASD was associated with a strikingly higher likelihood of a suicide or suicide attempt among First Nations individuals. The burden of FASD on the health care system, social services, the education system, and the justice system is considerable, but young people identifying as First Nations are at particularly high risk for adverse outcomes based on the cumulative contributing stressors they experience.

To date, only 1 published study has examined the burden of health and social service use by individuals with confirmed FASD diagnoses.⁵ Brownell et al.’s population-based comparison⁵ of FASD-diagnosed individuals (aged 6+) to the general population of Manitoba showed that individuals with FASD had higher rates of hospitalizations, physician visits, and prescriptions. In the current study, rates of physician visits were similar between the FN FASD and non-FN FASD groups. This similarity was unexpected, given the poorer health outcomes often reported for Indigenous children compared to non-Indigenous children in Canada.^15,16 Although the full cohort analysis also showed similar results for hospitalizations between FN FASD and non-FN FASD groups, when the sensitivity analysis excluding those in remote communities was conducted, the FN FASD group had lower hospitalization rates than the non-FN FASD group. Lower rates of hospitalizations and similar rates of physician visits despite potentially poorer health for First Nations young people may reflect poorer access to quality health services among First Nations families. In a 2003 public opinion poll, First Nations respondents reported considerable difficulty in gaining appointments with family physicians, pediatricians, and mental health workers.¹⁷ Health services often fail to address health and social inequities as a routine aspect of health care delivery.^18,19 Despite some improvement following the Truth and Reconciliation Commission’s call to action²⁰ to ensure that culturally appropriate health services are available, lack of provider attention to and/or awareness of culturally safe practices in health care settings, further amplified in the contexts of poverty, substance use, or stigmatizing conditions like mental disorders, continues to be a significant barrier to improving First Nations health.²¹

We observed several significant trends in prescription drug dispensation in our cohort. The rate of prescription drugs dispensed to FN FASD children and youth was generally similar to non-FN FASD individuals. We did observe much higher rates of psychostimulants and antipsychotics dispensed to the FN FASD group compared to the FN non-FASD group. This is similar to the finding presented by Brownell et al.,⁵ in which FASD-diagnosed individuals had higher dispensation rates of the above-named drug types compared to the general population. Given that in our study, ADHD was also diagnosed among a much higher proportion of FN FASD children than FN non-FASD children, as well as other evidence showing higher rates of mental disorders in individuals with FASD,²² this outcome is not unexpected.

FASD is associated with high rates of suicide and suicide attempts. Increased suicidality has been recorded among FASD-diagnosed individuals in the general population,²³ among FASD-diagnosed Aboriginal adolescents and adults,^24,25 and among mothers who have given birth to a child diagnosed with FASD.²⁶ In our study, there were no suicides recorded among non-FN FASD children and youth. However, among First Nations youth aged 10 and older and diagnosed with FASD, the rate of suicide and suicide attempts combined was strikingly high. We also observed a lower but still dismally high rate of suicide and suicide attempts among FN non-FASD youth. The drivers for these elevated rates of suicides and suicide attempts among First Nations people have been well documented: poverty, poor housing conditions, scarcity of employment opportunities, and a lack of access to culturally safe health care services (including mental health supports) contribute to poor physical health and an overall outlook of hopelessness.^27,28 The characteristics associated with FASD (impulsivity, tendency for alcohol and other drug abuse, and difficulties maintaining employment and personal relationships) serve to further exacerbate clinical symptoms of individuals with FASD living in conditions of environmental risk.^29,30 The cumulative effect of significant systemic social and cultural disadvantage in combination with FASD results in a group of First Nations youth with FASD who demonstrate high rates of suicide attempts and completion.

Previous studies have shown that children and youth with FASD and other intellectual disabilities are high users of social services and are at greater risk for child welfare involvement.^9,31
–33 Our study demonstrates additionally that First Nations children and youth diagnosed with FASD were more likely than the non–First Nations counterparts to have been taken into care of child welfare services. The overrepresentation of Indigenous children in care is well documented^34
–36 and is linked to the multigenerational effects of colonization and systemic barriers to equitable health and social policy, resulting in family, child, and caregiver characteristics that can undermine the capacity of parents to create nurturing environments for their children. Compared to Caucasian families in Canada, Indigenous families have less stable housing, greater dependence on income assistance, younger parents, more parents who were maltreated as children, and higher rates of substance misuse; they are also more likely to be under surveillance for signs of child neglect or maltreatment.³⁷ However, significant positive systemic change is under way with growing recognition of and action taken on Jordan’s Principle, the Truth and Reconciliation Commission’s calls to action, and the movement toward self-determination for Indigenous people.³⁸

Although little empirical evidence on criminality among youth with FASD is available, a few studies have shown links between FASD populations, including Indigenous youth with FASD, and involvement in the justice system.^39,40 Neurobehavioural characteristics of people with FASD (e.g., impulsivity, impaired comprehension, and poor judgement) and hardships common among First Nations populations (e.g., poverty, substance misuse) are thought to be risk factors for involvement with the criminal justice system.^41
–43 Our findings, demonstrating high rates of involvement with the criminal justice system among both FASD groups but even higher rates among FN FASD youth than non-FN FASD youth, are consistent with the results of these previous studies.

Finally, we examined education outcomes among children and youth with FASD. We detected no differences between FN FASD and non-FN FASD children and youth in school readiness at kindergarten, likelihood of grade repetition or high school graduation, or in whether they received funding for special education. These indicators of school success were extremely poor overall among both groups (72%-85% of children diagnosed with FASD were developmentally vulnerable at kindergarten entry; only 12%-14% of youth diagnosed with FASD graduated from high school), a finding consistent with other literature.^44,45 The lack of significant difference in educational outcomes between First Nations and non–First Nations students diagnosed with FASD might lead one to suggest that educational resources were at least equitably distributed among these 2 groups; however, differences in access to and quality of educational resources (outcomes that are difficult to capture using administrative data) contribute to poor educational outcomes for First Nations students,^46,47 and the question of why only about half of all children diagnosed with FASD received any special education funding at all remains unanswered. This may occur in part because our databases capture only the special education funding provided by the provincial department of education, while special education funding in First Nations schools is provided by the federal government.

Strengths and Limitations

A major strength of this study was our use of clinical data to identify all individuals diagnosed with FASD in the province of Manitoba, which is the only jurisdiction in Canada with a centralized clinic for conducting FASD assessment. Linking this clinical information to the extensive administrative data in the Manitoba Population Research Data Repository allowed for in-depth cross-sectoral analyses that describe how individuals with and without FASD interact with public services and systems across their life span. The study is, however, also limited by our strict use of FASD diagnoses as an inclusion criterion, since with this approach, we captured only individuals who received an assessment at the Manitoba FASD Centre. Although individuals living in remote areas who may not have access to these services and other individuals living with undiagnosed FASD may have been missed or even been part of the matched First Nations comparison group, diminishing our ability to detect differences between groups, we still observed highly significant differences in many of our comparisons. Administrative data are also poor at capturing measures of access to or availability of services, and the stark disparities we observed between groups may be partly explained by these factors.

Conclusion

The findings of this study emphasize the burden FASD places on multiple sectors and services, and they contribute new evidence on the gap between First Nations children and youth diagnosed with FASD and their non–First Nations peers. The strikingly high rates of social services use and justice system involvement among First Nations young people with FASD underscore some of the systemic challenges they encounter and highlight additional barriers they face in achieving social and academic success. Policy makers seeking to alleviate the high societal cost of FASD-related outcomes should recognize the critical need for appropriate resources for First Nations children with FASD.

Footnotes

Acknowledgements

The authors gratefully acknowledge the Manitoba Centre for Health Policy for use of data contained in the Manitoba Population Research Data Repository (HIPC #2011/2012-25). We are indebted to our data providers for provision of administrative health, social, education, and justice data: Manitoba Health, Vital Statistics, Manitoba Families, and Manitoba Education and Training, Manitoba Justice and the Manitoba FASD Centre. The results and conclusions of this study are those of the authors, and no official endorsement by the data providers is intended or should be inferred.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Access

Data used in this study were derived from administrative health and social data as a secondary use. The data were provided to the Manitoba Centre for Health Policy (MCHP) under specific data-sharing agreements and only approved for use at MCHP. The original source data are not owned by the authors or by MCHP and, as such, cannot be made available. The original data sources and approvals for use have been noted in the Acknowledgements section of the article. Where necessary, source data specific to this study may be reviewed at MCHP with the consent of the original data providers and the required privacy and ethical review bodies.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this study was provided by the Canadian Foundation for Fetal Alcohol Research and the University of Manitoba.

ORCID iD

Jennifer E. Enns, PhD

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