Special Education of Children with Fetal Alcohol Spectrum Disorder

Abstract The current study aimed to estimate the cost associated with special education among children (5 to 14 years) with Fetal Alcohol Spectrum Disorder (FASD) in elementary and middle school by sex, age group, and province and territory in Canada. It was estimated that there were 6,520 students with FASD receiving special education in Canada in 2011–2012. The cost of special education among these students was 53.5 million Canadian dollars. Implications for decision- and policymakers, educational systems and school staff are discussed.

Maternal alcohol consumption during pregnancy increases the risk for a wide range of adverse health outcomes, and is an established cause of Fetal Alcohol Spectrum Disorder (FASD). FASD is a nondiagnostic umbrella term used to characterize the full range of damage caused by prenatal alcohol exposure, varying from mild to severe and encompassing a broad array of deficits (Chudley et al., 2005). FASD includes three alcohol-related categorical diagnoses: Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), and Alcohol-Related Neurodevelopmental Disorder (ARND; Chudley et al., 2005). FAS is the most severe and visibly identifiable form of FASD. Alcohol is a teratogen and therefore, prenatal alcohol exposure can adversely affect any organ or system of the fetus. As a result, children with FASD may have a broad array of congential anomalies, as well as cognitive, behavioral, emotional, and adaptive functioning deficits. These impairments are likely to have lifelong implications.
FASD is associated with learning and behavioral problems, developmental disabilities, and speech-language deficits, all of which increase the need for special education services and the risk of poor academic achievement if such services are not received. Kvigne and colleagues (2004) reported that among a sample of 78 children with FAS/pFAS, 74% of children with FAS had a developmental delay (40% of children with pFAS), 70% had a speech-language deficit (43%, pFAS), 23% had a learning disability (20%, pFAS), and 14% suffered from developmental disabilities (23%, pFAS). Additionally, Burd, Klug, Martsolf, and Kerbeshian (2003) reported that 35% of their sample of children with FASD had a learning disability, and 26% had a developmental delay.
Given the delays and deficits commonly experienced by children with FASD, the majority of these children require special education services. If such support is not provided, children with FASD are extremely likely to experience problems related to education and literacy. Children with FASD in the education system are most often recognized for their behavioral problems, and thus, are identified as difficult students to manage. Streissguth and colleagues (2004) reported that among a sample of individuals with FASD, 14% of 161 school children and 61% of 250 adolescents and adults had disrupted school experiences. Approximately 53% of the adolescents with FASD had been suspended from school, 29% had been expelled, and 25% had dropped out. The most frequently mentioned learning problems were attention deficits (70%) and repeatedly incomplete schoolwork (58%; Streissguth et al., 2004). Further, Kvigne and colleagues (2004) reported that among their sample of 78 children with FAS/pFAS, 16% of the children with FAS and 11.4% of children with pFAS reported school failures.
In a recent Canadian study, it was reported that children with FASD were more than three times as likely to repeat a grade, and more than nine times as likely to receive special education funding for special needs compared to the general population (Brownell et al., 2013). However, there are no data available on the proportion of children with FAS/FASD requiring and receiving special education and the associated cost in Canada.
The current modeling study was designed to (1) estimate the number of children with FAS/FASD receiving special education by sex, age group, and province and territory; and (2) estimate the cost associated with special education among children with FAS/FASD in Canada in 2011-2012. This is the first study to estimate the number of children with FAS/FASD receiving special education and the associated cost not only in Canada, but also in any other country of the world. All cost figures are presented in Canadian dollars.

Method
A short survey was sent to the Minister of Education for each province and territory in January 2012 requesting the following information: (1) Number of children with FAS/FASD receiving special education in the province or territory; (2) Number of children with disabilities/special needs receiving special education in the province or territory; and (3) Cost of special education per child per year in the province or territory.
In this study, the estimate was restricted to elementary and middle school children (5 to 14 years) due to data availability issues pertaining to the number of children with disabilities receiving special education above the age of 14 years in Canada.

Estimation of the total number of children in elementary and middle school in Canada
The total number of children in elementary and middle school by sex, age group (5 to 9 years and 10 to 14 years), and province and territory in Canada in 2011-2012 was obtained from Statistics Canada (2013).

Estimation of the number of children with disabilities in elementary and middle school in Canada
In order to estimate the number of children with disabilities, the proportion of children with disabilities by sex and age group, obtained from the most recent Participation and Activity Limitation Survey 2006: A Profile of Education for Children with Disabilities in Canada (Statistics Canada, 2008), was applied to the total number of children in elementary and middle school in each Canadian province and territory in 2011-2012.
Estimation of the number of children receiving special education in elementary and middle school in Canada In order to estimate the number of children in Canada receiving special education, the proportion of children with disabilities receiving special education by sex and age group, obtained from the Participation and Activity Limitation Survey 2006: A Profile of Education for Children with Disabilities in Canada (Statistics Canada, 2008), was applied to the number of children with disabilities in each Canadian province and territory in 2011-2012.

Estimation of the number of children with FAS/FASD receiving special education in elementary and middle school in Canada
Two strategies were employed in order to obtain the number of children with FAS/FASD receiving some form of special education in Canada. First, a comprehensive literature search on the prevalence of children with FAS/FASD receiving special education in Canada or in any other country was conducted. Second, as stated, a short survey was sent to the Minister of Education for each province and territory.
Estimation of the cost of special education among children with FAS/FASD in elementary and middle school in Canada There were two strategies employed in order to obtain the average cost of special education per child by province and territory. First, as stated, a short survey was sent to the Minister of Education for each province and territory. Second, a search of the readily available published reports found on the Ministry of Education website for each province and territory was conducted. Three provinces (Ontario, Manitoba, and Nova Scotia) provided the cost of special education per child via the survey, and the cost data for British Columbia and Prince Edward Island were obtained from the respective Ministry of Education websites.
In cases where the cost of special education per child was reported by funding levels, which are dependent on the severity of the disability, the lowest cost per child was used to obtain the most conservative estimate. It should be noted that there is considerable variation in the eligibility criteria used to determine the level of funding per-child across the country, and any funding comparisons must consider the factors that influence per-child funding levels in order to be meaningful. For example, level 2 funding in one province/territory may not always be lower than level 3 funding in another province/territory. Furthermore, when cost data were not available for a province or territory, the average overall cost of special education per child (estimated by averaging the cost of special education in the provinces and territories for which data were available) was used.
Thus, in order to estimate the cost of special education among children with FAS/FASD, the average estimated cost of special education per child for each province and territory was applied to the estimated number of children with FAS/FASD receiving special education by sex and age group for each respective province and territory. Table 1 presents the average cost of special education per child for each province and territory.

Results
The overall response rate from the Minister of education for each province and territory was 61.5% (8 out of 13: Alberta, British Columbia, Manitoba, Newfoundland and Labrador, Northwest Territories, Nova Scotia, Ontario, and Quebec). However, some of the provinces responded that the data were not collected/available, and only one province, Newfoundland and Labrador, provided FASD-specific data.

Total number of children in elementary and middle school in Canada
According to Statistics Canada (2013), there were 3.7 million children aged 5 to 14 years (1.9 million boys and 1.8 million girls) in Canada in 2011-2012. There were 1.8 million children 5 to 9 years (928 thousand boys and 882 thousand girls) and 1.9 million children 10 to 14 years (987 thousand boys and 931 thousand girls) in Canada in 2011-2012.
The number of children in elementary and middle school by sex, age group, and province and territory is presented in Table 2.

Number of children with disabilities in elementary and middle school in Canada
The Participation and Activity Limitation Survey 2006 (Statistics Canada, 2008) revealed that 4.2% of Canadian children aged 5 to 9 years had one or more disabilities (5.3% among boys and 3.0% among girls) and 4.9% of Canadian children aged 10 to 14 years had one or more disabilities (6.0% among boys and 3.7% among girls). Number  Number  Cost of special education of children with FASD $13,158,442 $7,077,408 $20,235,851 $21,046,726 $12,247,709 $33,294,435 $34,205,168 $19,325,117 $53,530 Based on disability rates of 5.3% for boys 5 to 9 years, 3.0% for girls 5 to 9 years, 6.0% for boys 10 to 14 years, and 3.7% for girls 10 to 14 years (Statistics Canada, 2008).
c Based on rate of 36.2% for students with disabilities between the ages of 5 to 9 years, and 48.1% for students with disabilities between the ages of 10 to 14 years receiving some form of special education (Statistics Canada, 2008 Using these proportions, it was estimated that there were 169.3 thousand children with disabilities aged 5 to 14 years (108.4 thousand boys and 60.9 thousand girls) in Canada in 2011-2012. There were 75.7 thousand children with disabilities aged 5 to 9 years (49.2 thousand boys and 26.5 thousand girls) and 93.7 thousand children with disabilities aged 10 to 14 years (59.2 thousand boys and 34.5 thousand girls) in Canada in 2011-2012. The number of children with disabilities by sex, age group, and province and territory is presented in Table 2.

Number of children with disabilities receiving special education in elementary and middle school in Canada
It was reported that in 2006, 43.1% of children with disabilities aged 5 to 14 years were receiving special education (36.2% of children 5 to 9 years and 48.1% of children 10 to 14 years; Statistics Canada, 2008).
Based on these proportions, it was estimated that there were 73.7 thousand children aged 5 to 14 years receiving special education (46.3 thousand boys and 26.2 thousand girls) in Canada in 2011-2012. There were 27.4 thousand children 5 to 9 years (17.8 thousand boys and 9.6 thousand girls) and 45.1 thousand children 10 to 14 years receiving special education (28.5 thousand boys and 16.6 thousand girls) in Canada in 2011-2012. The number of children receiving special education by sex, age group, and province and territory is presented in Table 2.

Number of children with FAS/FASD receiving special education in elementary and middle school in Canada
The comprehensive literature search for publications reporting on the prevalence of children with FAS/FASD receiving special education in Canada did not produce any results.
The surveys, which were distributed to the Minister of Education for each province and territory, only yielded data from Newfoundland and Labrador regarding the number of children with FAS receiving special education. They reported that out of 11,342 students receiving special education in Newfoundland andLabrador in 2011-2012, 117 had FAS (Newfoundland andLabrador, Department of Education, n.d.). Therefore, the prevalence of FAS among children receiving special education was estimated to be approximately 1% (i.e., 10 per 1,000).
In Canada, the most commonly cited rough prevalence estimates are 1 per 1,000 for FAS and 9 per 1,000 for FASD (PHAC, 2003;Roberts & Nanson, 2000). Therefore, in order to estimate the number of students with FASD receiving some form of special education, a 1:9 (FAS:FASD) ratio was applied to the previously mentioned prevalence (i.e., 1% for FAS). This resulted in an estimate that 9% (i.e., 90 per 1,000) of students with FASD are receiving special education. These estimated proportions (1% for FAS and 9% for FASD) were assumed to be the same for each province and territory.
Based on a prevalence of 1%, it was estimated that there were 724 children with FAS 5 to 14 years of age receiving special education (463 boys and 262 girls) in Canada in 2011-2012. There were 274 children with FAS 5 to 9 years (178 boys and 96 girls) and 451 children with FAS 10 to 14 years receiving special education (285 boys and 166 girls) in Canada in 2011-2012.
Based on a prevalence of 9%, it was estimated that there were 6,520 children with FASD aged 5 to 14 years receiving special education (4,166 boys and 2,354 girls) in Canada in 2011-2012. There were 2,465 children with FASD 5 to 9 years (1,603 boys and 862 girls) and 4,055 children with FASD 10 to 14 years receiving special education (2,563 boys and 1,492 girls) in Canada in 2011-2012. It is important to note that the figures reported for FASD include those for FAS. The number of children with FAS/FASD receiving some form of special education by sex, age group, and province and territory is presented in Table 2.

Cost of special education among children with FAS/FASD in elementary and middle school in Canada
It was estimated that the cost of special education among children with FAS in elementary and middle school (i.e., children 5 to 14 years) was $5.9 million ($3.8 million among boys with FAS and $2.1 million among girls with FAS) in Canada in 2011-2012. The cost among children 5 to 9 years with FAS was $2.2 million ($1.5 million for boys with FAS and $786 thousand for girls with FAS), and the cost among children 10 to 14 years with FAS was $3.7 million ($2.3 million for boys with FAS and $1.4 million for girls with FAS).
Further, it was estimated that the cost of special education among children with FASD in elementary and middle school (i.e., children 5 to 14 years) was $53.5 million ($34.2 million among boys with FASD and $19.3 million among girls with FASD) in Canada in 2011-2012. The cost among children 5 to 9 years with FASD was $20.2 million ($13.2 million for boys with FASD and $7.1 million for girls with FASD), and the cost among children 10 to 14 years with FASD was $33.3 million ($21.0 million for boys with FASD and $12.2 million for girls with FASD).
It is important to note that the cost figures presented for FASD include those for FAS. The cost of special education among children with FAS/FASD in elementary and middle school by sex, age group, and province and territory are presented in Table 2.

Discussion
Despite having used the most conservative approach, the estimated annual cost of special education among children with FASD in elementary and middle school in Canada is high. It was estimated that of the 169 thousand school children 5 to 14 years with a disability, 6,631 have FASD and are receiving some form of special education.
However, these estimates have important limitations that should be considered in the interpretation of this data. First, the number of children with FASD receiving special education in each Canadian province and territory was unavailable (with the exception of Newfoundland and Labrador, which, as stated, disclosed the number of children identified with FAS receiving special education). As such, the prevalence of children with FAS receiving some form of special education was estimated based on the data from Newfoundland and Labrador, which may not reflect the actual prevalence in the other provinces and territories.
Second, the prevalence of FASD among children receiving some form of special education was not available, and a 1:9 (FAS:FASD) ratio was assumed. This ratio is reflective of the most commonly cited prevalence among the general population of Canada (PHAC, 2003b;Roberts & Nanson, 2000) and aside from the fact that the true prevalence is currently unknown in Canada, it may not be reflective of the special education population.
Third, the cost of special education was only available for a few provinces and territories, and since special education funding is typically determined by level of need (i.e., severity of the deficits and disabilities), it is unknown whether the special education cost figures per student used in this study are reflective of students with FASD specifically.
Fourth, the proportion of children attending private schools, home schooled children, and those in residential care were not accounted for. The prevalence of FASD among these educational systems could be different than those that were estimated for the provincial and territorial educational systems.
Despite the fact that the estimated cost of special education among children with FASD is substantial, it is likely that it is still underestimated for the following reasons. First, it is likely that the estimated prevalence of children with FAS/FASD receiving some form of special education is underestimated given that FASD is largely underdiagnosed (Paintner et al., 2012). Second, the cost of special education for children with FASD was estimated for elementary and middle school only (due to data limitations), and thus, the cost of special education associated with students with FAS/FASD in high school was not included. Third, the cost of determining the eligibility for special education among children with FASD, which includes an assessment of their current skill level, their specific needs, and their functional abilities (Kalberg & Buckley, 2007), was also not included in these cost calculations. Finally, the costs of specialized training for teachers providing special education services and programs were not included.
Although this study has several limitations, it does provide a working estimate, which is a powerful tool for understanding the burden that FASD has on the educational system. Therefore, the cost data presented in this study should serve to provide a baseline for funding agencies and school systems. This study should be considered as a first step in an incremental process to improve data collection on the cost and utilization of special education services by children and families who are affected by FASD. When such data becomes available, then additional research can refine these estimates over time.
The current estimates provide both national and international decision-and policymakers alike with a clear perspective on the magnitude of the burden and cost of special education among children with FASD. This study is intended to draw attention to the impact of FASD on the educational system, and the need for (1) the collaboration of education and health care professionals in the assessment, diagnosis, and support of students with FASD, as classroom observations can provide valuable information when assessing a child; (2) teacher education programs and university faculties of education to develop courses on FASD; and (3) mandatory training in FASD for any teacher seeking a career in special education (Bredberg, 2011).
Further, the implications of this study for school staff include several areas of emphasis. First, clear guidelines or procedural protocols for teachers to use when designing special education programs for students with FASD need to be made readily available. Given that teachers and other support staff will undoubtedly meet a number of children with FASD within their teaching careers, there is an urgent need to develop and implement systematic training for teachers to better understand the needs of students with FASD and the best educational strategies when teaching them. However, as a spectrum disorder the deficits are complex and diverse, and additional research is needed in order to better understand the educational needs of students with FASD and the strategies that can be employed when teaching these students (Ryan & Ferguson, 2006). Second, given that FASD is largely underdiagnosed (Paintner et al., 2012), it is important that teachers are trained so that they can recognize potential cases of FASD. Teachers could then begin the process of initiating interventions and strategies that can improve the child's learning and educational experience. Accordingly, teachers need to be informed of the range of interventions and strategies available to them so that they can tailor their educational programs accordingly. Edmonds and Crichton (2008) have shown that offering students with FASD individualized and customized education, along with counseling and life support, has proven to be effective. Third, teachers are in a unique position to educate young people (both girls and boys) about the detrimental effects of consuming alcohol while pregnant. The educational arena is a prime location for prevention initiatives to be implemented.

Funding
This work was supported by the Public Health Agency of Canada.